ID: 1 Child's Name: Bryan Dowdle Parent's Name: Shelly & Scott Child's Birthdate: 04/11/1992 Email: shellyd@bryanskidneypage.org Residence: Billings, MT, USA Child's Story: Diagnosed prenataly through ultrasound at 30 weeks. Very low amniotic fluid, enlarged and cystic kidneys, enlarged ureters and bladder. Prognosis was death. Born at 35 weeks at University of Utah Hospital in Salt Lake City Utah. On respirator for several hours and then oxygen for a day or so. Born with 10% kidney funtion and small, but working lungs. Vesicostomy placed at 4 days old. We moved him to Seattle Children's Hospital where he had a pyelostomy and a ureterostomy placed. We took him home when he was about 6 or 7 weeks old. Since then he has had many more surgeries including: nephrectomy, ureter reimplantation, bilateral hydroceles repaired, peritoneal dialysis catheter placed, g-tube placed, and many others. He started peritoneal dialysis at home when he was about a year old. He spent 4 years on peritoneal dialysis and 3 weeks on hemo dialysis before he got a kidney transplant at age 5. He had his transplant at UCLA Medical Center in Los Angeles, California. Bryan has always been delayed in all areas of development and was finally diagnosed with autism. Current Medications: Prograf, Prednisone, Rapamune, Ditropan, Fe-Tenic, Calcium Carbonate, Children's vitamin with iron. ID: 2 Child's Name: Ryan O'Kane Parent's Name: Martina & Dermot Child's Birthdate: 12/07/96 Email: granmok02@netscapeonline.co.uk Residence: County Derry, Northern Ireland Child's Story: Ryan was born at 38 weeks and seemed fine, I noticed when the doctor broke my waters there was no gush of fluid but said nothing. Ryan was a perfect baby he slept and fed( although it was little ). he was too quiet, at 3 and a half weeks he was admitted with acute renal failure and septicemma. They said a week at the outside and he would have been dead. He had his valves burn't away at 6 weeks and a vesicostomy put in at 5 months. At nineteen months he had his right kidney removed because of frequent urine infections. He was on nasel tube feeds twice for 6 months each time, once due to failure to thrive and the 2nd due to his urea being sky high. He has a renal function of 38% in his remaining left kidney. He had his vesicostomy reversed at 3yrs old. His current medication consists of one-alpha solution (vitamin d), Keflex(antibodic) and his inhalers for his asthma. Ryan future is unknown, we live from day to day watching and waiting for the renal failure to diminish. ID: 3 Child's Name: Conner Pickard Parent's Name: Tessa & Eddie Pickard & Big BrotherCole (2) Child's Birthdate: 02/23/2000 Email: Tessa_615@Yahoo.com Residence: Waskom, Texas USA Child's Story: We didn't know Conner had anything wrong until right when he was born. His bladder and kidneys were so full he had a buldge in his tummy. When they did a sonogram on him, they found out he had PUV's. This is what caused the kidney failure. We are hoping to not need a kidney transplant until he is a teenager. Conner had his first surgury at 5 days old. A vesicostomy. At 3 months, they removed the PUV's and closed the vesicostomy. It was re-opened at 10 mo. because he wasn't 'going' on his own. He kept getting UTI's that just wouldn't go away. The UTI's are not as Chronic anymore. He was also chronicly dehydrated for a long time. It was a long first year for us, but we are happy to have made it this far. Conner is 2 1/2 now. He is no longer tube fed, and is eating better on his own. Right now, he is getting his care at Children's Medical Center-Dallas. We hope to continue with the Dr.'s there. Conner has a big brother and a little brother, both of whom were born healthy, with no signs of PUV or any other kidney problems. ID: 4 Child's Name: Philip James Nathaniel Selvaratnam Parent's Name: Amanda and Christian and big sister Kate (10) Child's Birthdate: 05/07/1999 Email: as51@york.ac.uk Residence: York, UK Child's Story: Philip was born at home in May 1999 and we had a very straight forward birth. However he was only 6.5 lbs and did not put anyweight on for the first 3 weeks. After that he began to put weight on slowly but was a very wingy baby. He aslo had very bad nappies but we put that down to him being breast fed. He slept very well although only on his front. In Sept 1999 he was admitted into hospital with severe dehydration and failure to thrive. At that point he had no urine output as that had been slowly reducing over the past 2 weeks or so but we hadnt really noticed as it was so gradual. He weighed 10lbs and looked awful. He was put on a drip and catherterised. He was eventually diagnosed with PUV and has had 2 ablations of the PUVs at 5 months and 7 months various DMSA and ultracound scans. He has one very poor kidney function 25% and one 75%. At the moment there does not seem to be any furtehr reduction in function and his creatine and BUN levels have been constant since Dec 1999. He is 20lbs and average height. he has passed all his miles stones early and appears fit and well at the moment. He also carries the b -thalassemia trait but this causes him no problems apart from a very slight annemia. He now has Blood tests every 4months and kidney scans every 6 months and urine samples every time we get worried. Medications: trimethoprim once a day ID: 5 Child's Name: Dawson Medin Parent's Name: Dana and David Child's Birthdate: 02/24/1999 Email: dtmedin@yahoo.com Residence: Cedar Rapids, Iowa Child's Story: Dawson was born with PUV's (we saw it through an ultrasound in utero). At three weeks he had surgery to remove the valves and a year later a VGUG showed the reflux into the kidneys has gotten worse (grades 5/4 bilaterally). Dawson is also Failure to Thrive (he doesn't like food) and has not hit his milestones on time (a little delayed). We are planning reimplementation surgery when Dawson reaches at least 20 lbs (his weight and height are not on the percentage charts). Dawson is on Bactrim (antibiotics), Vitamins, and Zantac liquid daily. His right kidney is functioning at 15% and his left at 85% (that is the "super kidney"). We are seen at the University of Iowa Hospitals and Clinics in Iowa City. ID: 6 Child's Name: Kyle Aaron Parent's Name: Stan and Vickie Aaron Child's Birthdate: 06/02/83 Email: vaaron@eatel.net Residence: Baton Rouge, LA, US Child's Story: Kyle was born with pnuemothorax and not diagnosed until 3 weeks old after bleeding. He was diverted until 3 years old and then had bladder augmentation at 4 years. He began cathing at 1st grade and did great until 3rd grade when the infections began. His infections were frequent(monthly)until 10th grade and suddenly stopped. Meanwhile he has lost much of his kidney function to infection. He is doing great now by cathing every 4 hours with sterile supplies. He is 5'8" tall and active in sports and school. We were told when he was an infant that his quality of life would be poor--how wrong they were!! His courage and spirit uplift our lives every day. ID: 7 Child's Name: Kristoffer Parent's Name: Tim and Tammy Dotson Child's Birthdate: 06-04-93 Email: kris@ncweb.com Residence: Painesville Ohio USA Child's Story: Kristoffer was born a breech birth shortly after birth he began to swell but the doctors were more concerned with his heart and lung problems. At 4 days of age he was diagnosed with PUVs he had surgery a few days later. A VCUG at age 4 months showed grade 5 bladder reflux in both kidneys. The right kidney was damaged beyond repair at birth so it is non functioning the other kidney functions around 40 to 50%. His neph hopes that he will not need a kidney till he is around 10 or 11. Kristoffer has had numerous surgeries, a testicle that did not come down, a hernia and the reimplantation and rerouting of his ureters which was unsuccessful. He also has a pulmonary stenosis, severe asthma, hearing loss, vision problems and developmental delays. His 10 yr old brother Jon also had PUVs but his caused him no problems till he was 3 they kept noticing blood in his urine he had surgery and has had no problems since. My OB docs never checked for kidney problems the urologist said it was *rare* to have 2 boys in the same family with valves. Leave it to us to be different! ID: 8 Child's Name: Thomas Alexander Gall Parent's Name: Lee Nolan and Ian Gall Child's Birthdate: 12/08/1998 Email: ljnol@hotmail.com Residence: Brisbane, Queensland, Australia Child's Story: Medications: Fergon (4ml/twice daily) Captopril (.4ml/twice daily) Eprex injection (1000units/twice weekly) Sodium Chloride (5ml/twice daily) Calcitriol (1 capsule per day) Keflex (4ml/daily) Losec (1 tab/daily) Kindergen (renal specific formula) Surgeries and Procedures: Removal of PUV (10/12/98: 2 days old) Pylorectomy (sp?) (19/1/99: 6 weeks old) Tenckoff catheter inserted (27/6/00: 18 months old) Repositioning of Tenckoff catheter (22/8/00: 20 months old) Peritoneal Dialysis (3 days a week - Monday, Wednesday, Friday: lab results are good). Awaiting tx (possibly cadaver kidney) Birth Information: Four weeks premature, born by C-Sect, 2610g, very little amniotic fluid, first night spent in humidicrib. Doctors were optimistic that Tom's kidney function would improve once valves were removed; however, about 4 days after the removal, it was discovered that his kidney function had significantly decreased. We told he probably wouldn't survive past 2 weeks of age. Other Information: First two months spent in neonatal unit of Royal Women's Hospital ... time spent between intensive and special care units. Tom refuses to take food orally, so is naso-gastrically tube fed. Since dialysis commenced, Tom has started experimenting with food, not yet swallowing anything, but putting food in his mouth and playing. Tom has had problems with rickets and is not yet walking. He is a happy, energetic little boy with some medical problems and by far the bravest person that we know. He attends daycare 2 days a week and loves playing with "Miss Kylie" and all the other children in his "room". ID: 9 Child's Name: Andrew Burke Parent's Name: Roslyn and Patrick Burke Child's Birthdate: 11/30/99 Email: burkefam@iprimus.com.au Residence: Riverina, N.S.W. Australia Child's Story: Since reading these pages and learning more about PUV's, we consider Andrew to be one of the lucky ones. At the time he was diagnosed (at 6.5 months) this was not the case. Until then we had struggled to get Andrew to put on weight. None of the health care workers we had come into contact with could be bothered looking into it. One doctor told me Andrew was too lazy to drink and I should cut the tips off his teats so that he could drink more easily. Finally we moved towns and our wonderful new baby health nurse sent us to see a pediatrician. An initial urine test showed nothing but a blood test later showed his creatinine levels were way too high. We were sent to Royal Childrens Hospital Melbourne where he had several tests and a cystoscopy to fix the PUV's, however due to renal reflux the damage had been done. His right kidney is nonfunctioning and the left only 33%. We have been told that in the long term his left kidney will fail and he will require a transplant - perhaps in 5 to 10 years. We will never know if his kidneys could have been saved if it had been diagnosed in utero as is usually the case or even if we had picked it up earlier after he was born. We had been told in the past during our struggles to breast feed that if he had 6 to 7 wet nappies a day he was getting enough milk. Now we know that Andrew will pass frequent urine even if he is dehydrated so I guess there weren't a lot of clues. Other than his weight you wouldn't know there was anything wrong with him. He has always been a bright, happy (and cute) baby. Developmentally he is even ahead in some areas. At 10 months he has just taken his first steps. At the moment his weight is off the graph and we have recently commenced NG feeding at night. His meds at the moment are: Sodium Bicarbonate - to adjust his acid levels (I think this is why he doesn't vomit anymore) Bactrim - antibiotic to prevent urinary tract infections Calcitriol - to prevent rickets Zantac - settles his tummy at night while he's on the pump As I said we think we are lucky and we hope we stay that way. We don't know what the future holds for Andrew, we just hope we are strong enough to deal with what's ahead. ID: 10 Child's Name: Martin Powell Davidson Parent's Name: Mike and Joni Child's Birthdate: 9/25/00 Email: jonikay209@cs.com Residence: Beaverton, Oregon Child's Story: Martin was diagnosed with a large bladder at 18 weeks in utero. His bladder slowly got smaller and we had much hope until my amniotic fluid started to decrease and the doctors then told us that it was probably a good chance that he would have kidney problems. In his ultrasounds his kidneys were never large but just very bright which made it unable for the doctors to tell how severe his kidney problems would be. The doctors were planning on inducing me so that there wouldn't be a chance of a still birth. But they were wanting to wait until he got to 2000 grams so that he would be big enough for dialysis if necessary. So once he reached that mark which was at 34 weeks he was born and weighed 2175 grams which was 4lbs,12oz. The nephrologist took some ultrasounds and some other tests and found not so good news. Martin's kidneys were pretty much not functioning at all. So five days after he was born he went into surgery for a PD catheter and a vesicostimy (spelling?). He was set to start dialysis in a week which would be two weeks after his birth. He was on dialysis for about a month when his catheter became clogged and stopped working. They tried everything and then decided to go in for another surgery and remove the catheter. When they finally stopped the dialysis and was in a pause mode for surgery they kept noticing that his labs were actually getting better than they were when he was on dialysis. So there plan was was to remove the catheter and leave it out and see what his labs do. During this whole time Martin was in the neonatal center and Doernbecher Children's Hospital in Portland. We were all praying that his labs would do good and that he would finally be able to come home after six weeks of being in the hospital. God came through and granted us our wish and we were able to take Martin home on November 15, 2000 not on dialysis. Now we are in limbo getting labs every two weeks and they are doing great, his levels have actually been getting better ever since he has been home. He still has his vesicostimy and is waiting to get a little bigger until the urologists are able to do something about his urinary tract. They don't think that it is PUV's but just something isn't working right. He is on some medicines to keep him less acidic. He is now 14 weeks old and is still doing great without dialysis. We do know that the future holds a transplant and maybe dialysis. But we are so thankful that God has given us our little Martin and we are prepared for anything and everything and we never expected the miracles that have come along so far. ID: 11 Child's Name: Michael Zermani Parent's Name: John and Deborah Zermani Child's Birthdate: 04/25/1973 Email: zermanim@yahoo.com (Michael's) Residence: Reading, MA, USA Child's Story: I was born at Symmes Hospital in Arlington, MA in 1973 with PUV. It wasn't diagnosed until I was 4 days old. By that time, my body chemistry was off the wall, and my right kidney had been blown out and damaged beyond repair by the backup in my urinary tract. I was rushed to Boston Floating I believe. I was operated on by Dr. Alan Retik, who is now the head of Pediatric Urology at Boston Children's Hospital. I had a right nephroscopy (I think that's what it is called), bilateral ureterostomy and numerous reconstructive surgeries on my reflux valve. I also had the procedure that results in a small scar below the belly button. I forget the name but I remember seeing a picture of someone's baby that had the same thing. As far as I know, I was the first child to survive this. Dr. Retik had told my father way back when that nobody had ever survived the condition/procedures I had done. Recently, I went back to visit Dr. Re! tik, just to say hello; I hadn't seen him in 20 years. He was glad to sit down and talk. He mentioned to me that even on the very day I was visiting, my old x-rays were out on loan to another hospital. He introduced me to people in his office I had never met before, but who all knew who I was. I suppose I am a kind of celebrity of sorts around those parts. These days, I am pretty much OK. Every now and then my kidney will get sore, but that is due to it's size I am told. A little motrin clears things right up. Anyway, that's pretty much my whole story. Feel free to ask me anything you want. ID: 12 Child's Name: Bradley Donald Verran Parent's Name: Patti & Gerry Child's Birthdate: 03/01/2000 Email: patti_verran@hotmail.com Residence: Halifax, Nova Scotia Canada Child's Story: We found out there was a problem when I went for my 18 week ultrasound. They saw 3 black circles -meaning something was fluid filled. They figured out it was his bladder and ureters. They didn't seem too alarmed because the amniotic fluid was fine. They told us that meant the blockage was only partial. We went for numerous ultrasounds watching the amniotic fluid. They had many discussions about the shunt operation and everyone decided that if we could get Bradley to a point where he could be delivered that would be best. (Who knows if that is true now?!) At 32 weeks the amniotic fluid started decreasing. Bradley was born at 37 weeks. He had a few lung problems in the first couple days but everything is ok now. They operated at 6 days old to give him a vesicostomy. This was closed and the PUV's removed at 6 months old (10/26/2000) Until this was closed he had at least 1 UTI a month which meant a week or so in the hospital on IV antibiotics. His GFR in April showed 33% function in his right kidney and nothing in his left. Another will be done at 1yr old. I hope all the UTI's, strong antibiotics, and reflux haven't damaged his kidney any more. Bradley seems to be voiding on his own fine since the removal of the PUV's. He does have a thick bladder wall, reflux up to his kidney and extreemly large ureters that are placed low in the bladder wall. (The urologist said he has never seen ureters so large. Isn't that reassuring!) We didn't get to bring Bradley home until he was 2 months old. He spent his days with an NG tube until August 2000 when he started drinking all the fluids he needs to survive. He is a fluid loser and can dehydrate quickly. He must drink at least 40 oz of fluids to keep him at the optimal elecrolite levels. Right now we mix 28 oz of PM60/40 formula with an extra 12 oz of water and sneak in his Sodium Chloride too. (So far it's working.) We just spent the week of 12/27/2000 - 01/03/2001 in the hospital beacuse of another UTI. (A fun New Years Eve) This is the first time he has needed to be admitted since his operation in September. We had a long conversation with our Neph and I gather from him that there will be more of a chance Bradley will need a transplant than not need one some day. I just hope it is years down the road. He said we just need to monitor him closely during growth spirts. (Keeping my fingers crossed) Bradley Meds: Captopril(0.5ml twice daily) Sodium Chloride (12ml daily) Sodium Bicarbonate (4ml twice daily) One alpha Vitamin D (1ml daily)Antibiotic (treatment dose until his next check up on Monday) ID: 13 Child's Name: Charlie Jones Parent's Name: Jane & Simon Child's Birthdate: 10/27/00 Email: simonjones@smartchat.net.au Residence: Melbourne, Australia Child's Story: Charlie was induced at 36 weeks after I became ill with an undiagnosed virus. His bilateral hydronephroses had been spotted on the 19 week ultrasound and follow up scans had confirmed this, although my amniotic fluid levels had all been normal. On day 3, he became very ill with viral meningitis (caught from me). Ultrasounds and an MCU had shown that he had PUV's but treatment plans for this were put on hold while he battled with the meningitis. A catheter was inserted to relieve the pressure. He was transferred to the Royal Children's Hospital here in Melbourne and for about 48 hours we were convinced that we were going to lose him. He pulled through and then we faced the problems caused by the PUV's. At 18 days he was well enough to undergo a cystoscopy which found the remainders of one thin valve. He was allowed home 4 days after the surgery and is on a prophylactic dose of Bactrim. So far he hasn't had any UTI's and is gaining weight really well. A follow up cystocopy on 15/01/01 showed that the urethra is now clear. Blood tests show his creatinine levels to be good (0.03) He is scheduled to have an Ultrasound and an Mag 3 (to establish what his kidney function is) in March. Charlie has had a lot of bad luck to have had 2 life threatening conditions already but we realise that we are also very lucky that he has survived the meningitis and seems so far to be only mildly affected by the PUVs. ID: 14 Child's Name: Ross Michael Parent's Name: Mike and Maureen Child's Birthdate: 7-21-1998 Email: mtronsen@hotmail.com Residence: Morley, MI, USA Child's Story: On July 21, 1998, Ross came into the world 4 weeks early. We didn't know at the time that there was a problem; though I felt as if there were all along. He was born with PUV, and as a result, he had lung hypoplasia (immature lungs), and multi-cystic dysplastic kidneys (his kidneys were filled with cysts inside and out). He was taken away and I didn't get to see him until 8 hours after he was born. He was tranferred to Devos Children's Hospital NICU for 8 days. That's where we learned of his condition. He had been ventalized since birth. We were then transferred to Detroit Children's Hospital of Michigan where we spent his remaining months. He had surgery at 2 weeks to have his valves removed and a P.D. cath put in. He was started immediately on P.D. It went well at first, and he got to his "dry" weight, but then he developed pseudomonas areugenosa (sp?), a bad bacterial infection. He was treated for it, and it eventually went away. He had to have his P.D. cath removed and another one placed. He also had a broviac. Ultimately, the P.D. stopped working and the only other option was to try hemo. We decided to give it a shot, but it failed. I think Ross was just trying to tell us that it was time to let him go. I called him "my little pretty boy" because he was so beautiful. All the nurses fell in love with him. He grew, smiled, suck his fist along with his vent tube, and he communicated with his eyes. He always had a way of telling us what to do. We left him in God's hands. We always asked him what he wanted and told him that at any time he was ready to be with Jesus, we would understand. We were so fortunate to have him for the time we did. We knew that he would ultimately die, but we wanted to have peace knowing that we tried everything possible to try to save him. In the end, Ross became very ill. We decided that it was time to give him back to God. We took him off life support, except for feeds, we still fed him through his N.G. tube. We held him, took more pictures and video. Our families were there too. He breathed for 10 hours until he passed away at 8:13am on 11-18-1998. When he took his last breath in his daddy's arms, we took our first breath of peace. Peace knowing that there would be no more surgeries, no more needle pricks, no more pain. He was with Jesus and there is no better place for him to be. We don't understand why this happened to us, but it doesn't matter. God knew that He was going to give us Ross, and He didn't take him from us, we gave him back. We had 4 long, hard months with him, but I would never trade them for the world! Yes, it's still hard at times, but I can't even explain the peace that we have knowing that he's ok now. Rest well in the arms of Jesus, Ross. My husband and I want to help other parents that might be going through want we went through. Believe me it was hard, but we got to spend 4 months with our son and get to know him before he died. If he had died at birth, I would probably be insane right now. On 2-10-2000, Ross' little brother was born. Healthy! We named him Ian Ross. Ian means "God has been gracious". We thought that it was perfect. Ross is burried less than 2 miles from our home. My husband and I are the cemetary groundkeepers and so proud of it! Thank you for letting me share a small piece of our story with you. Please feel free to e-mail us. ID: 15 Child's Name: Hunter James Clinton Parker Parent's Name: Virginia & John Child's Birthdate: 07/20/01 Email: Momof3grls1boy22@aol.com Residence: Roanoke,Virginia,USA Child's Story: My unborn son was recently diagnosed with hydronephrosis and PUV blockage. I'm already a mom of three healthy girls and have no clue what to expect or do with a child with a disease. Doctors say that we won't know the extent of the damage until he is born. But try telling that to mom who has no idea of what to expect or do. Doctors offer no sentiment when it came to my son's health and fear I may lose him in the future to this disease. So what to do I wish I knew but it is like sitting around waiting but the waiting only makes me feel like he's sick and there is nothing I can do about it. ID: 16 Child's Name: Taylor Elizabeth Bell Parent's Name: Nancy and Billy Crumey Child's Birthdate: 10/14/88 Email: Holdenon36@hotmail.com Residence: Olive Branch, MS USA Child's Story: My daughter, Taylor, was not born with PUV's but with a complicated cloacal birth defect. She had one solitary, hydronephrotic, multicystic kidney that had a megaureter. She also had virtually no bladder to speak of. To date she has had over 40 reconstructive surgeries. We have gone through, sometimes twice, all the major surgeries. Reimplantation, bladder ugmentations, stomas...ureterostomies...she currently has a Mitrofanoff catheterizable stoma that we cath through every 3 hours.We have known since birth that kidney transplantation would be inevitable and so today, at 13, we are facing this soon. Currently she has 20% function in the one existing kidney. I quess you could call us "veterans". We have been around the block a time or two (or four-haha) We live in MS but travel to Children's Hospital in Boston for her major surgeries. Anyway, no matter how long you have dealt with all of this...you can always learn and making wonderful friends has been one positive aspect of this journey. ID: 17 Child's Name: Cole Jared Bodine Parent's Name: Sandi and Bill Child's Birthdate: 11/10/1998 Email: bodines3@netzero.net Residence: Southern New Jersey, USA Child's Story: Cole was born 8lbs., 9ozs. on Nov 10th, 1998. When he was born he had to be delivered by C-section after 14 hours of labor because he had heart rate decelerations. He had feeding difficulties and had to stay in the intensive care nursery during his first few days of life. However, the hospital sent him home thinking that he was completely healthy. During his first week check-up the Doctor discovered that Cole's voiding stream was very weak and after a second look at his stream several days later it was determined that he should see a Urologist immediately and so he was rushed to our nearest hospital that could handle his case. Shortly after arriving at the hospital the Docs determined that Cole's urethra was blocked and they took Cole into surgery. There he had excess urine removed form his bladder and kidneys and the Doctors finished the surgery by leaving a vesicostomy for the urine to empty from his bladder. It was determined at this time that Cole had damage to his kidneys and from there he was also referred to a Nephrologist. Our Nephrologist has told us that Cole will need a kidney transplant sometime in the future but we do not know when that will be. And although no one knows wether or not we will have a Living Related Donor, we do at least know for now that both parents are blood matches which is keeping us in high hopes that when transplant arrives one of us will be lucky enough to also be a "perfect match". When Cole was 9 months old his vesicostomy was closed and we thought that the Docs would remove the "PUV's" but it became apparent that Cole did not only have "PUV's", but he also had a "Urethral Stricture" which is longer and thicker than PUV's and harder to tunnel through to find a passage for the urine to flow through. Since then Cole's Urethra continues to close a bit every so often and he had to go back for repeated fulgurations (removal of tissue that grows back after surgery). Cole also has Grade V reflux and it has been mentioned that a re-implantation of the ureters would be a good idea. However, a second opinion from another doctor suggests otherwise so for now we are holding off. Cole's bladder may need augumentation at some point and a Metrofanoff has been mentioned and it is something that we are still considering. Cole has about 45 percent kidney function and he is taking Sodium Bicarbonate to help with Renal Tubular Acidosis. He has been dignosed with Chronic Renal Failure and Dysplasia in both Kidneys. He also has Hydronephrosis. In addition to the other meds, Cole takes Bactrim on a nightly basis to ward of the frequent UTI's that accompany these conditions. He also takes DHT to help with is bone growth. And he still drinks formula instead of milk. Cole is a bright boy with a dynamic personality. He is funny and smart and meets all of his "milestones" easily except those involving growth. He is small for his age and since he was about 6 months old he has not been able to grow beyond the bottom 5th percentile. Usually he is not on the growth charts at all. He has always had eating issues and there were many months where he would "spit up" at the mere sight of food or formula. His eating continues to get better with age but he rarely shows desire to eat like other children around him do. He has to be really hungry and in the mood to eat before he will eat at all. In retrospect Cole is doing much better than we thought he would and he surprises us with his strength and great attitude every single day. He is truly amazing. At this time Cole is 3 years old. UPDATE: Cole is now almost 5. He is still small for his age and his creatine is 1.2. He has had 12 surgeries to remove the stricture in his urethra. The stricture always grows back. He is eating better now but is still very picky and does not like to try a lot of different foods. Cole has stayed on the growth charts at the bottom 5th percentile and never goes above the 5th in height or weight. He has started pre-school and he is the smallest person in his class. Cole is also very hyper but he is very friendly. He is not the kind of hyyper kid that hurts or bothers others. He just runs and runs and it is very hard to keep up with him. He also has a strong mind and a strong will which makes it hard to catheterize him and so far our family has not had any luck with catheterization through the urethra. This year (2003) we tried to "self-cath" Cole following two different surgeries. The idea behind the catheterization was to pass the catheter once a day in hopes to keep the stricture from growing back. Cole will not tolerate the catheter and we have abondoned the idea on both occassions. We tried many ways to get him to take the catheter...prizes,rewards,coaxing,teamwork, etc...and now matter what we tried it would not work. Cole's stricture is located higher inside the urethra. It is close to the sphincter area near the bladder. Therefore, it is not likely a surgery to remove the strictured area and re-attach the urethra will be a succcess. Our next option will be an appendicovesicostomy since our attempts to fight the recurring stricture have been unsuccessful. At this time we are waiting to see if the stricture will grow back following his last surgery one month ago. Usually it grows back within 3 to 6 months and we are still in the first 6 weeks following surgery. If the stricture starts to close the urethra again we will go back to the urologist and discuss alternate ways for Cole to void. This is not our favorite option, however the Urology team has told us that it is not very likely Cole's urethra will ever stay open. Because the urethra tends to close rapidly (2-3 times per year) they do not want to perform surgery this often because they do not feel that it is in Cole's best interest to go through this routine so many times. ID: 18 Child's Name: Vincent Carl--aka. Vinny Parent's Name: Melissa and Tom Child's Birthdate: 07-14-99 Email: osubucks96@aol.com Residence: Dallas, TX USA Child's Story: At the 20 week ultrasound, the technician noticed that the bladder was unusually large and no voiding had occurred during the hour long procedure. The OB/GYN the next day called to say "not a big deal". She said 85% of the time it is no big deal and all works out when the baby is born. We were monitored till 31.5 weeks and then we were finally sent to a perinatologist (spelling??). She told us we would have to deliver our baby the very next day. She confirmed that he had Hydronephrosis and PUV. The bladder was abnormal and one kidney (the left) was definitely abnormal and possibly the right too. We were out of amniotic fluid and she said I had to have him early or he would not survive. Vinny was born via c-section on 7/14/99. He weighed in at 4 lbs and 4 ozs--a bruiser for the NICU. 3 days after birth he had nephrostomy tubes inserted into his kidneys to drain them. Cathertization was not working. His creatanin was 3.5 and was not getting lower. 1 week after his birth (5 days after the nephrostomy procedure) the Urologist and Nephrologist told us he would not make it. Normally the creatanin should come down faster--they thought. We were given the option to start peritineal dialysis or wait a while longer and see if medicine and nutrition would help. We were scared. We chose the wait and see option and decided to have Vinny baptized the very next day--Thursday. On Friday, his creatanin started coming down. It finally rested at 1.7. A Miracle --the first of many, I hope! The urologist said if it got below 2.5 he would do the vesecostomy. 4 Weeks after Vinny's birth he had the vesecostomy performed. 6 weeks after his birth we went home. Our nephrologist and urologist have much hope for Vinny. Vinny's kidney function is approximately 30% in the left kidney. He has had the nephrectomy to remove the right kidney, the ureterostomy to relieve the bladder and the PUVs removed. Vinny also has a mickey button and is pumped Suplena at night. He is slowly starting to swallow and eat, with the help of feeding specialits and therapy. The last UD and ultrasound show the bladder is now holding capacity appropriate for a 2 year old and appears to be compliant. The urologist would like Vinny to have the surgery to close the ureterostomy and start voiding on his own. We have had only one UTI in 29 months. The nephrologist forecasts a transplant in the future--teenage years. Vinny is not as tall as would be expected but....he is mighty in will and personality. We are lucky, fortunate and blessed. Vinny is on bactrim, megace (appetite enhancer), stool softener, zantac and vitamins. ID: 19 Child's Name: Lane Ochoa Parent's Name: Tamara & Chris Ochoa Child's Birthdate: 06/04/1997 Email: tamaraochoa@hotmail.com Residence: Lacey,Wa.USA Child's Story: My son is now 4.His story started when I was 5 months pregnant.The ultrasound revealed enlarged kidneys due to PUV.The Doctor I saw said that I would need to make arrangements because babies with this condition very rarely survive.He turned out to be wrong.I had low amniotic fluid but enough to see it through until I was 36 weeks along.He was born weighing 6 lbs.6 oz.He was white as a sheet but more beautiful than anything I had ever seen.The doctors operated on him by cystoscopy when he was 2 days old.His creatnine was 3.6 .He had jaundice and was in the hospital for two weeks.He was doing okay while I was breastfeeding but around 12 months he was starting to show signs of failure to thrive.It is so hard to feed a kid when they don't want to eat.He had a left nephrectomy when he was about 1 & 1/2 and we later had to put a feeding tube in for about another year and a half.We were feeding him dialysised pediasure that he is drinking to this day,luckily by mouth now not feeding tube. He has acid reflux but has NEVER had a bladder infection.We all know how rare that is.Along with the acid reflux he has behavioral vomiting due to his lack of appetite.It was so bad at one point that we couldn't even go in a grocery store or restaurant because he would induce vomiting.He is currently on bicitra,iron,nephrocaps titralac,vit D, & lansoprazole.He is doing pretty well but in January of last year my husband and I witnessed him having a siezure.The Doctors thought at first it was a febrile seizure because he had a slight fever.When it happened again the next month,they diagnosed him with a seizure disorder.He is now on tegretol and doing pretty well.He goes to preschool and has only had one seizure since the medicine was introduced.It was absolutely horifying when we found out about his seizure disorder.We didn't expect anything like this to happen after all we had been through.Although the memories are still so vivid,we live a pretty normal life now .His future might include a transplant but we are hopeful that he will at least be alot older.He is small for his age but tough!We are lucky!! ID: 20 Child's Name: Justin Parent's Name: Angela and Tim Child's Birthdate: 11/05/1998 Email: angela_quinn@bstz.com Residence: San Jose, California Child's Story: I had an absolutely normal pregnancy with my second son - Justin. At my regular check-up two weeks before my due date, my doctor noticed during an ultrasound that there was very low amniotic fluid and said "we'll need to deliver this baby today!". Justin was born 4 hours later in distress because his lungs had not fully developed. Upon further investigation, the neonatologist (familiar with PUV) realized that the lungs had not fully developed because Justin's kidneys and bladder were enlarged. Justin was immediately transferred by ambulance to Lucille Packard Children's Hospital in Palo Alto. The doctors at Lucille Packard confirmed the presence of PUVs and immediately relieved the pressure on the bladder and kidneys. Their first concern were his lungs and once the lungs were strong, Justin had surgery to get his vesecostomy at 5 days old. Justin spent his first 30 days at LPCH while we tried to get him to gain weight. Finally, the doctors felt that we could take care of him at home and sent Justin home with a NG tube. Luckily he only needed the NG tube for a couple of months. At 18 months the valves were taken out and once we confirmed that Justin could urinate normally, the vesecostomy was closed. Justin has 95% function in his right kidney and the left is working at 10-13%. The doctors feel that this kidney will eventually stop working all together. Justin is now 3 years old and his prognosis looks good. His nephrologist feels that his right kidney can support him so we watch and wait. Other than the kidney issue, Justin is healthy and thriving. He's not as tall as his brother, so we're keeping an eye on his growth. As of today, Justin is on sodium bicarbonate, macrodantin and captopril. The next step is to confirm whether there is still reflux into the left kidney. The last ultrasound showed no reflux, so he may have grown out of it. If he still has reflux, the doctors will consider taking the left kidney out. I just want to thank Lucille Packard Chilren's Hospital for all that they've done for us - this hospital and their doctors are the best!!!! With their support and Justin's will to live (he's a fighter) he'll make it through this!!! ID: 21 Child's Name: Kayla Faith Limberg Parent's Name: Tonya (Limberg) Otto & Stephen Marvin Child's Birthdate: 5/20/1997 Email: MommaLimberg@aol.com Residence: Nevada, Iowa Child's Story: Kayla had recurrent UTI's, but at the time, I had no idea that she had Vesicoureteral Reflux on the right side. Our Dr. ordered her a VCUG, and it showed Grade 3 reflux. We were refered to Dr. Cooper at the Pediatric Specialty Clinic at the University of Iowa. Upon further testing, and a renal scan showing decreased kidney function, we made the decision to operate, to save what we could of the kidney function while we had the chance. Kayla was on Bactrim to prevent breakthrough infections prior to the operation, but she still broke through about 4 times in a six month period. Since she has had the procedure, she has had 2 UTI's, and they were both within the first two months after surgery. She is 4 months post op now,and we just had our VCUG to determine if the surgery was successful, and I was thrilled to find out that everything looks good. I am so thankful for the staff at the U of I, especially Dr. Cooper, for the wonderful job that they did with my daugther. It was a distance to travel for her visits, 2 and a half hours each way, but I would make the same decision in a heartbeat. I was very satisfied with the quality of care and the way we were treated at the clinic, and the hosptial. ID: 22 Child's Name: Mason Parent's Name: Kym and Bill Child's Birthdate: 12/20/94 Email: macspenc2000@cs.com Residence: Lakewood, CA USA Child's Story: In November 2000, just before his 6th birthday, Mason was diagnosed with Grade 4 unilateral reflux. His only problems had been one UTI that January and one in September. The pediatrician only wanted to treat the UTI again, but my gut said it's time for a Urologiest. The renal scan in 12/00 showed a small right kidney with scarring on the top and bottom. Unfortunatly after that scan we had to switch to Kaiser insurance. The Urologist put him on antio. daily, Ditropan and mineral oil daily. He believed that was all the result of dysfunctional voiding. We have really worked hard on that. This November the tests showed he was still a grade 4. The renal scan only showed the small kindy, but he stated it was a slightly different test because the material they inject was not available. He now wants to operate, but says the problem will likely reoccur because of the voiding. He has suggested bio-feedback, hypnosis, etc. I just keep thinking that this is not mental but physical. That there is something he isn't checking. Anyone with anything helpful please e-mail. Sincerely, Kym ID: 23 Child's Name: Daniel Medin Parent's Name: David & Dana Child's Birthdate: 04/13/01 Email: dtmedin@yahoo.com Residence: Cedar Rapids, Iowa Child's Story: Daniel is our second child- and both boys have PUV. We found Daniel's hydronephrosis in-utero with an ultrasound. Daniel had his valve oblated at 2 weeks of age and is doing pretty good since then. His VCUG in May 2001 should bilateral reflux grades 5. So with another VCUG soon, we sould be headed to the hospital for ureter re-implant surgery. Daniel is on daily anti-biotics to prevent any UTI's. He had one severe UTI when he was 6 weeks old. Daniel was not thriving on my pumped breastmilk, so I added extra formula (Neosure) to it for 6 months. He still wasn't doing well growth wise, so I took him off bm all together and now he is on super-strength formula and doing well! Anybody here have any genetic links to PUV besides us? ID: 24 Child's Name: JAMES MICHAEL Parent's Name: KERRI BULTMAN Child's Birthdate: 08/20/2002 Email: JUNGLEWOMAN41@AOL.COM Residence: COCOA, FL Child's Story: MY DAUGHTER'S BABY IS DUE AUGUST 20,2002 AND WHEN SHE WAS 12 WEEKS ALONG THE DOCTOR FOUND SOMETHING ON THE ULTRASOUND THAT WASN'T RIGHT AND WHEN SHE WAS 14 WEEKS, SHE HAD TO HAVE ANOTHER U/S DONE AND AGAIN AT 15 WEEKS WITH A HIGH RISK DOCTOR. WE JUST GOT THE KIDNEY FUNCTION RESULTS BACK AND WERE TOLD THAT THEY SHOWED A 7.9, WHATEVER THAT MEANS. ALL WE KNOW IT'S BAD NEWS AND NOW WERE WAITING TO FIND A DOCTOR THAT WILL DO A UTERO SURGERY TO OPEN UP THE BLADDER ON THE BABY. WE ARE WAITING AND PRAYING DAILY. WE HAD NEVER HEARD OF SUCH A THING UNTIL IT HAPPENED TO US. WE PRAY FOR ALL YOU OUT THERE THAT IS GOING THROUGH THE SAME THING WE ARE. WE WERE TOLD IT DOESN'T LOOK GOOD FOR BABY JAMES. ID: 25 Child's Name: Caleb Ortega Parent's Name: Roxanne Santana Child's Birthdate: 11/06/01 Email: roxydan1@aol.com Residence: pomona,ca. Child's Story: they day i delivered my son caleb(11-06-01) all semmed well. the day before i was going hom from the hosoital i noticed bloody urine in his diaper.i became very paranoid.he was my third child and nothing like tis ever happened with any of my other children. the nursing staff and peditrician ruled it as "my hormones passing through his urine." so we were sent home. a week later he broke out in a fever of 102 and was urinating blood. i rushed him to the emergency in pomona valley. he had a uti he was hospitalized for 7 days on iv antbiotics. a ultrasound showed he had a dilated kidney. he was later sent home on oral antibiotics for 10 days. he was scheduled to visit a urologist. at his appointment he said he looked very good and would see him in 6 months for possilble circumcision, and told me i needed to pull his foreskin back ever so often to loosen it up. i asked what about his dilated kidney, he said it was fine and ill see you in 6 months. (let me remind you my son was only 2 weeks at the time.)so we were sent home thinking he was fine. exactly 2 days later he was urinating blood again but with no fever. i called his urologist to ask what i should do he said to take him to emergency at pomona for a urine analysis. they found no bacteria present but only white blood cells present. and we were sent home w/o any meds. 4 days later he awoke with a fever of 103 i rushed him to emergency again and it just so happened his culture had came back that very day wich said he had another uti. ihe was sent home on oral antibiotics. that night his fever was uncontrolable and his urine was just bright bloody red. i was advised to take him to loma linda childrens hospital. he was admitted immeditly and asked why pomona valley did not admit him. at loma linda a VCUG dicovered he had a gradeIII reflux and a ultrasound showed his kidney was still dilated.he was hopitalized for 10 days on IV antibiotics. and had to have surgery on his ureter valves at 1 month old. the surgery(12-17-01) was un successful due to they could not fit the camera and blade through his penis hole to cut what needed to be cut. and they wanted to try two months later. now he is 4 months old and just had a cystocopy done(3-05-02) where some of the blockage in his ureter was removed but not all. so theres a possibility of another surgery. he is now in alot of pain and urinating blood from the cystocopy that was done. now only time will tell how well he will be. its very hard as a parent to see your child suffer, i tend to wonder if my child health was neglected by the doctors at pomona valley. but whats done is done and the emergancy room and doctor visits has become a great part of my life now. and i feel as if i carry this huge load on my back wondering if my son will ever get better and wont have to relie on antibiotics to keep him out of the hospital and the poking of iv's and catheters. ID: 28 Child's Name: Jacob Parent's Name: Kristi and Eric Bader Child's Birthdate: May 29, 20 Email: kristianderic2001@yahoo.com Residence: Elizabeth City, NC Child's Story: At my 20 week U/S, my doc said all looked well but a part of the kidney was a little dilated. She said it was probably nothing..and scheduled another U/S "just in case". At 30 weeks, the U/S showed an enlarged bladder and kidneys and ureters, decreased amniotic fluid, and a probable diagnosis of PUVs was made. We were crushed, but optimistic. I spent the next 7 weeks on bedrest at home and then in the hospital in Portland, Oregon where I delivered Jake at 37 1/2 weeks. He appeared totally healthy..but after day 2 his creatinine had gone up to 3.6. A vesicostomy was performed, and his creatinine began to edge downward slowly. At one point, the acidity of his blood to due the kidney failure was so bad our nephrologist had him all prepped for surgery to put in a dialysis catheter. Then, the floor doc decided to check the acidity once more before wheeling him down to surgery...it was fine. The previous measure of acidity had been drawn inaccurately. After that scare, we took him home several days later when his creatinine had reached 2.4. It gradually decreased and settled at 1.1, where it remains today. He is now almost 16 months old. He had his vesicostomy reversed at 10 months, but and U/S 6 weeks later showed he wasn't voiding well enough on his own, so we have been catheterizing him. He has had a total of three UTIs, not too bad, but they were all very preventable, the last two occuring because of improper medical supervision of our cathing efforts. Jake suffers from many of the side effects of kidney disfunction: he is very small for his age. He dislikes food, and gets most of his calories from baby formula still. He vomits on and off. He dehydrates easily, and is always thirsty. However, developmentally Jake has always done great. He has a happy, sweet temperament, is very social and friendly, and at least as active and verbal as other kids his age. He has gotten used to the medication and the cathing and doctor's visits, and seems unfazed by it all. He is a wonderful little boy and we are so very glad to have him! ID: 30 Child's Name: Daniel Mir Parent's Name: Sherry Mir-Harpster Child's Birthdate: 07/20/1983 Email: sherryharpster@earthlink.net Residence: Miami Florida Child's Story: My 19 year old son Daniel was diagnosed PUV in 1983 at 5 months of age. Had a grade 5 Vesicourethral reflux. Creatinine was 1.0 at diagnosis. Had immediate valve ablation. Severe Reflux had been our problem and difficulty for 12 years. Daniel had reimplantation of his urethers twice due to severe UPJ obstruction, A vesicostomy at age 3 until age 8 and we were reflux free for 2 years until it came back. So at age 12 he had a bladder augmentation using a small piece of his ureter but that did not work. So he had another bladder augmentation using ileum (Intestine) . All in all 26 operations later he is doing well. He catheterizes himself 4-5 times a day to empty the residual urine in his bladder and has a creatinine of 3.5 and clinically doing well. No transplant yet. I am not sure that he will be able to go through his adult years without transplant, but we are hoping. As all of you know they always say that adolescence reeks havoc on this kids kidneys and the creatinine certainly has risen in recent years... but has held steady for 3 years now flucuating between 2.8 and 3.5 depending on how well he caths. My son's case 20 years ago was harder as they knew less and I had always been very alone in dealing with this as we did not have the internet to get information and reach out to others. Most kids died back then. I have traveled to almost every children's hospital in the USA and met doctors who knew the most about PUV. Mom's with kids that have PUV should get an automatic degree in Urology and Nephrology after the first year. We probably know as much as doctors. I work with other mom's here from Miami Children's Hospital whose children have PUV. Believe me when I tell you there are alot of us out there. My son at this point is a success story and it has been a very long road, and i am blessed with a great kid. He changed my priorities early on in life and now at 47 I think that I am the luckiest mom in the world. You can draw great courage and strength from these kids. It takes incredible bravery to be so sick with all the horrible things they do to you. I salute all of you, because I have walked in your shoes and they are big shoes to walk in. God only picks incredible people to be the mothers of these kids. Consider yourself lucky like I do. Daniel just graduated from HS and has a very nice girlfriend. We laugh when I tell him that she needs to be a certain type of person as one day she is going to have my job! Good luck to all of you. I would like to hear from some other moms.. ID: 31 Child's Name: Jacob Parent's Name: Tricia & Shawn Brehmer Child's Birthdate: 11-11-2000 Email: pmb05@hotmail.com Residence: Onalaska, Wisconsin Child's Story: Diagnosed in utero at 18 wks. with hydronephrosis. Perinatalogist said nothing to worry about. Follow up ultrasound at 26 wks. showed worse hydronephrosis. Perinatologist told us that one kidney didn't look like it was forming right, and we may have to think about what kind of measures we would want taken at birth. I still had sufficient amniotic fluid, so we were not scheduled for follow up for 10 more wks. We went for a second opinion at 29wks. and were given the diagnosis of probable PUV. I had very little amniotic fluid left at this point and doc. wanted to deliver baby ASAP. Jacob was born at 30 weeks after 3 days of induction on Nov. 11, 2000. He weighed 4 lbs, 10 oz. A catheter was placed 12 hours later. A VCUG at 2 days of age confirmed PUV and bilateral grade 5 reflux. A vesicostomy was placed at 3 days of age. Jacob stayed in the NICU for 4 weeks--1 week was on mechanical ventilation. He came home with a feeding tube, supplemental oxygen and Bactrim to prevent UTIs. By 7 wks. of age he was eating on his own and by 10 wks. he was breathing on his own. When Jacob was 10 wks. old we found out that he had one functioning and one non-functioning kidney. We were also given the diagnosis of VURD (vesicoureteral reflux with renal dysplasia). At 14 months of age Jacob's reflux had improved to grades 1 & 2. He had his valves cleared, his left (non-functioning) kidney removed, and his vesicostomy closed. At that time he remained on Bactrim and started Ditropan as well. At 20 months VCUG showed reflux was GONE. Urodynamics showed that bladder pressure is great on Ditropan. We took him off Bactrim at that time. Jacob's creatinine was 0.9 at birth. Since that time it has never been higher than 0.6 and most recently was 0.3 (Jan. 2003). Jacob has never had a UTI. He remains on Ditropan. We will continue to monitor the bladder. Although Jacob was a preemie, he shows no signs of it. He hit a few milestones later, but now, at 2 years old, he is completely caught up to his peers. He loves to run, climb, play, and has an incredible vocabulary. Our long term prognosis is good, and we are hoping that Jacob will be able to live his entire life with his good kidney. We realize that we are extremely blessed and pray every day for Jacob's continued health. ID: 32 Child's Name: Jock Parent's Name: Cynthia - sister Child's Birthdate: Oct. 8, 19 Email: walli2k@aol.com Residence: Atlanta, GA Child's Story: My little brother Jock is 4 years old. At 4 years old, he weighs about 34 pounds. He has little to no appetite. He's never had a strong appetite and prefers to drink pediasure instead of eating solid food. He's had painful urniations for at least the last 9 - 12 months. He would scream with pain when he has to urinate and holds it until the last minute because of the pain. Countless visits to doctors resulted in them saying he may have a psychological problem. In Dec. he started to have persistent fevers which didn't have any apparent cause. In late Jan. 2003 he was admitted to the hospital with near kidney failure. They were operating at 10% because his bladder, which was twice the size that it should be because it didn't empty properly, were blocking his kidneys. His blood pressure was 180/160 or something like that. Thankfully his kidneys have recovered and his blood pressure is being controlled by medication. He doesn't have the urine pain because he's using a catheter. Upon my insistence, he was referred to a pediatric urologist in Atlanta. The VCUG doesn't show that he has PUV. It shows that his sphincter muscle is flat so that urine is unable to escape and his bladder has been stretched to double the normal size. He is having an endoscopy performed tomorrow, 2/12/03. If that doesn't show an obstruction, the urologist has given us 3 options: 1) mitrofonoff(sp?), 2) suprubic catheter, or 3) noncontinent stoma. Then we'll have to hope that one day his bladder and sphincter muscle work normally. I'm not sure if we have any other options. Has anyone had a child with these kind of symptoms? Please e-mail me at walli2k@aol.com with any information. Thanks! ID: 33 Child's Name: ANDREW NOAH AGUILAR Parent's Name: Grandma Child's Birthdate: 8-21-2003 Email: - Residence: Fremont, CA Child's Story: Andrew's story started back when my oldest daugter was about 17 weeks pregnant.Kaiser found his enlarged bladder right away on ultra sound. They sent her to UCSF where they are able to treat PUV's in utro. After 3 hours of ultrasound testing we were told he had no right kidney function and little on the left. The OB there said she had 3 choices. 1st abort 2nd go a little longer induce, see the baby and he would die. 3rd go full term and he would live for about 3 hours and she would be able to comfort him and he would die. She decided to take her 3 hours. On the advise of my 14 year old, her science teacher told her to find out more on the web. I found this sight and I & my family couldn't have been happier.One thing I kept asking God was to point us in the right direction. Her Kaiser Dr. told her to try Stanford. She had an appointment.They kept a close eye on the both of them. I found a PUV doctor here on the internet and started calling. She was able to meet him & his Nemphoroligist before he was born they were so reassuring they would try their best to help. Michelle was 21 and didn't feel well her whole pregnancy. Really bad backaches. She had bad morning sickness and even passed out twice. She didn't feel Andrew move that much, she said he shifted. But her spirts were so uplifted she was going to be a mom. She was so mad at UCSF she said they were so wrong she new her baby (we called him George) George would make it. At 25 weeks he still had plenty of amnio water. That was great news, That meant his lungs were developing good. But because his bladder was so big it was pushing up on his heart. Another scare. Michelle called and was crying her back hurt so bad. She was 33 weeks.She felt no contractions. I told her to just lets go and see the Doctor.She was already at 5 with buldging bag. Andrew was coming. I was so excited and so scared. We called the surgeon and the nemphorologist while she was in labor. That premie weight 5lbs.5oz. and scored 6 on the apgar.At 13 hours old Andrew had his vesicostmy and had a cathetar placed for peritonealdialisis. He was on dialisis for 5 days. The Dr. came in and had the dialisis stopped Andrews left kidney had kicked in and started working. He was doing great. Andrew stayed 4 weeks at LPCH. 2 weeks later we thought he had an infection on his dialisis sight and they admitted him for a week. No infection. A couple of weeks later he went into complete kidney failure. We were thankful he already had his cathater placed. He stayed for 1 month. She brought him home.He had 3 shots a week of epo, dialisis 14 hours each night,a ng tube,& a ton meds. at 5 months his cathater stopped working and had to have surgery twice to replace it. It had flipped and tissue was growing inside and he had out grown it.The dr. said it could have been any one of the 3. He had all 3.Andrew is now 6 months and will need surgery to close his vesicostomy, reconstruct his bladder, and a transplant probably this summer. He is a complete joy. He's a great baby. Almost like he knows. He loves his Doctors and nurses. He smiles, giggles, talks to everyone. We love him and wouldn't trade him for the world.Thank you God for sending Andrew. His middle name is Noah because he servived his great flood. LPCH is a wonderfull hospital. His dialisis nurses are just the best. The whole team has been great. ID: 34 Child's Name: Francis Skinner Parent's Name: Michael & Kellie Skinner Child's Birthdate: 13/11/2003 Email: kellie.skinner@bigpond.com Residence: Melbourne Child's Story: At the nineteen week ultrasound it was noted that the bladder and kidneys were slightly enlarged but as there was plenty of amniotic fluid we were told not to be too concerned but to have fortnightly ultrasounds for the remainder of the pregnancy. Between 25 and 27 weeks the kidneys blew up and the amniotic fluid levels dropped and we were told the baby may not survive. For five weeks we had ultrasounds twice weekly and in utero procedures weekly, they drained the babys bladder in utero via a huge needle. At each visit his doctors discussed whether to risk taking him out via C Section and at 32 weeks they decided it was time. He was born weighing 2.3 kilos but a lot of it was extra fluid and he rapidly dropped to 1.8 kilos. He was in hospital for almost two months, initially he a had a catheter put straight into his bladder and at about five weeks old (still - 3 weeks corrected) he had his valves ablerated. He has been home for about six weeks but has been readmitted to hospital twice for uti's. His right kidney has very little function and his left about 20%. His doctors expect he will need to start dialysis / transplant in one to two years. For now he is a very happy little baby who loves his food and loves his extra water and is gaining weight nicely and we are just happy to have him. At the moment he has Bicarb and Sodium four times per day, Bactrim to prevent uti's, Calcitriol once per day and Aransep every three weeks. ID: 35 Child's Name: Joshua Parent's Name: Milena and Darren McDonald Child's Birthdate: 18th March Email: milenamc@bigpond.com Residence: Sydney, Australia Child's Story: Joshua was diagnosed in utero when I was 30 weeks pregnant, one one could tell us exactly what Joshua's situation was until he was born, there was talk of Hydronephrosis or maybe PUV. Joshua was born at 38 weeks, my amniotic fluid had decreased a little by then, Joshua was born weighing 2.7kgs. He was diagnosed having a "horseshoe kidney" right side non-functioning with "multi-cystic dysplasia" and the left side functioning at around 20% with grade 4 reflux, (this will be surgically correct when he is about to be toilet trained). Joshua's creatinine rose up to 312 and we are now at about 189 and we are hoping it will stay stable for now. We know that the future will be dialysis/transplant and hopefully I can be the donor when the time comes, unfortunatly, my husband is the wrong blood group, but like a lot of the parents on this list we are hoping transplant will be a long way off. Joshua is now nearly one and is gaining very good weight at the moment, he has a nasal gastric tube in and in two weeks time we are having a gastrostomy tube put in. Joshua takes a few meds, they are Bactrim once a day, Calcitriol once a week and Aranesp once every three weeks. Joshua is a bright and happy little boy and developmentally is way ahead, we are very fortunate to have such a beautiful little boy, we all adore him, he has a big brother called Jamie who is nearly four and Joshua just loves him. ID: 36 Child's Name: Isaac Daniel Parent's Name: Frank and Joy Child's Birthdate: 12/7/2002 Email: franknjoyanna@yahoo.com Residence: Seattle, WA Child's Story: Isaac was diagnosed at 18 weeks gestation with PUV’s, Prune Belly Syndrome, Potter’s Syndrome, Ascites, Club Foot, Growth Retardation and really low levels of amniotic fluid. The doctors said there was 0% chance of survival and also said that I would miscarry of deliver a stillborn Isaac. Miraculously, Isaac made it to 35 weeks gestation. His abdomen was filled with fluid and was much larger than his head, so they had to do a perinatal tap before I could deliver him. He weighed in at 3lbs. 3ozs after all the fluid was taken out of his abdomen. He was put on a ventilator and had to be on one the entire time of his life due to lack of chest muscle from the PBS. His lungs were half the size they should have been, but were strong enough to support him. He didn’t end up having Potter’s Syndrome like the doctors diagnosed (they couldn’t explain how his lungs had formed with so little amniotic fluid). His bladder was slightly larger than it should have been, he had level three reflux, his ureters were damaged slightly, his kidneys were working perfectly and he could urinate on his own. He had to be on antibiotics to keep him from getting a UTI. Isaac didn’t have PUV’s like the doctors diagnosed only some signs that he had some sort of blockage at one point. Isaac had Hip Dyspalsia of his right hip, but not Club Foot like the doctors diagnosed. None of the many excellent doctors could ever figure out where the Ascites was coming from. It wasn’t urinary like they had thought while he was in my womb. Isaac’s heart had coarctations/narrowings in the aorta, probably due to the two-vessel umbilical cord he had while in the womb. He had to have his heart fixed twice. The second surgery led to his passing due to a blood infection he received from one of his IV lines. Isaac was our little miracle and we are so thankful for the 9 1/2 weeks we had with him. Please never lose hope. Always have faith… Isaac was the baby boy that wasn’t supposed to live. The baby boy who was diagnosed with so many problems that the doctors gave him no chance at life whatsoever. But Isaac lived. And even after his passing, Isaac continues to be the unexplainable & unusual miracle to even the most experienced doctors. My only prayer now is that doctors are able to extend what they learned from my son’s problems and focus on the new babies that have complications like my son had. ID: 37 Child's Name: Josh Parent's Name: Becky and Dan Child's Birthdate: 06/08/1993 Email: beckybemerer@hotmail.com Residence: Ohio Child's Story: My son is now 10 years old, and our story starts, like most other mothers stories, before birth. Josh was diagnosed with hydronephrosis in utero. He was closely watched until my fluid depressed, and I was induced. Josh was born at 38 weeks. He was transferred to Childrens Hospital Medical center of Cincinnati, and underwent numerous testing. He was diagnosed with UPJ obstructions, Posterior Urethral valves, and Dysplastic bladder, along with hydronephrosis of both kidneys. His first surgery was at two days old, and findings were not good. We were told that he would need a transplant before age of three. Thankfully, they were wrong, and after numerous surgeries, nephrostomy tubes, vesicostomys, and ureter reconstruction, he has been doing great. He is smaller that the average child, now at age 10, and is currently on growth hormones, in which we are having remarkable success. His last surgery was in 1997. He has been relatively healthy, with no complications, however, last testing-VCUG showed reflux in right kidney which is badly damaged/scarred. Concerned now as to what this means for the future. Right now, grade 2 reflux, but what does this mean to an already compromised kidney? I would love to hear from anyone good or bad. More information the better. I can't tell you how great it felt to read your messages and know that I was not alone in this. God bless to all of you and your children! ID: 38 Child's Name: Chase Haley Parent's Name: Sandra and Brendan Child's Birthdate: 15.05.2002 Email: haleyb@bigpond.com Residence: Brisbane, Australia Child's Story: Blissfully ignorant I went along to my 18 week scan only to be told 'I'd like to be able to tell you your baby's going to be alright - but I can't'. Chase had an enlarged bladder and I had low amniotic fluid. We were referred to the Foetal Medicine Unit at the Mater Children's Hospital - Brisbane, Australia where we were closely monitored with regular scans. Initially we were given a prognosis of mild renal impairment (probably requiring a transplant at age 15). The subsequent amniocentesis we had came back clear. Then at the 33 week scan there showed the absense of amniotic fluid, and presence of hydronephrosis with a prognosis of significant renal impairment. I started a two injection course of steroids (to help develop his lungs) and then we delivered by C-Section, Chase at 34 weeks. Within days, Chase was diagnosed with chronic renal failure and spent his first seven weeks in hospital from the NICU to the Special Care Nursery, and then to the Mater Children's Private Hospital where he had surgery to remove his PUV's. During this hospital stay he got his first UTI (apparently from the NICU) and subsequently went to ICU with high blood pressure. At eight weeks of age he contracted RSV (otherwise known as Broncialitis)which put him in ICU for five days with a partially collapsed lung. Chase continued to spend time in and out of hospital for the first eight months of his life - mostly in. He became anaemic(requiring a blood transfusion). He contracted multiple UTI's and the gastro bug during many hospital stays. At three months of age, his urologist went in for a second look at his PUV's and also circumcised him, which did reduce the incidents of UTI's. He was fed Kindergen (Formular for babys with CRF) via an NG tube with little success at him taking a bottle. The day he turned 5 months old he was rushed into emergency surgery where they inserted his Tenckhoff catheter and started dialysis immeidately in ICU, after they discovered potassium levels at 8 (Heart failure material apparently). We're waiting for him to grow big enough for his transplant (approximately age 2) and hopefully we'll do a living related transplant. After eight months of virtually continuous vomiting up feeds it was discovered that he had significant reflux, and a hiaties hernia which was rectified with surgery. At this time, he had a fundoplication to prevent vomiting, had his G - button inserted and a port (for blood work and IV's). Due to the food pump which he has been on virtually from the start, he has food aversion and will not take anything (other than water)through his mouth. We are currently attending speech therapy working on this problem. Chase is also currently seeing a physiotherapist to assist in his delay in gross motor development (He doesn't walk, or crawl, or roll - the last probably due to the tube and button in his tummy). He is progressing well with physio, and is currently (Aged 15 mths)being fitted for orthopedic shoes to assist with his walking (Diagnosed with a right club foot in-utero, due to cramped conditions resulting from low amniotic fluid). MEDICATIONS: Sodium Bicarbonate, Sodium Chloride, Captopril, Calcitriol, Bactrim, Fergon, Motilium, Pentavite, Aranesp injection (weekly), and Polycose added to his formular. Awaiting urodynamics to see what his bladder is doing prior to transplant. With all he has been through, we love him dearly. Blessed to have him, we wouldn't change him for the world. Our kids are wonderful gifts from God sent to enrich our lives. ID: 39 Child's Name: Kaitlyn Parent's Name: Kelly and Karl Rose Child's Birthdate: October 1, Email: kellyr@mindsync.com Residence: Fair Oaks, CA Child's Story: Kaitlyn was born 5 1/2 weeks early, but had no idea she had any kidney problems until she continued to lose weight and at 2 1/2 weeks, she was diagnosed with bilateral dysplastic kidneys. The neonatologist basically said poor prognosis and take her home and enjoy her while she's alive. Creatnine level was 2.6 at that time. Kaitlyn is now 10 1/2 months, has a peritoneal dialysis catheter that hasn't needed to be used yet. Her creatnine level is 1.6 now. She has a central line for blood draws and an NG tube that was put in at 7 months due to slow weight gain. Are thinking about the G-tube and possibly starting the growth hormone this week. Just weighting for her to get up to 20lbs to do the transplant the I (her mom) hope to donate. She is now 17lbs. ID: 40 Child's Name: Lucie Coulter Parent's Name: Ruth and Nigel Child's Birthdate: 16/4/2003 Email: ncoulter2003@yahoo.com Residence: Woolgoolga, Australia Child's Story: An ultrasound at 18 weeks pregnant told us that our baby had a hydronephrotic right kidney, but the full extent of the problems weren't clear until after her birth. After several ultrasounds, a Mag 3 and cystoscopy the picture emerged - both kidneys had duplex collecting systems with 2 ureters and ectopic ureteroceles. The right kidney had gross hydronephrosis and the ureters were enlarged and tortuous. There was also UPJ obstruction and reflux. Lucie had a right ureterostomy when she was 15 days old. She had regular scans until her pyeloplasty at 4 months of age. She is now 6 1/2 months old and is soon to have another Mag 3 before the next stage of reconstruction. Despite these problems we are lucky that she is not a sick child, and has grown and developed as any other normal baby. Although she is only part of the way through her journey, it should all be fixed up before she even really knows about it - and it will all be a story that we will tell her one day. Seeing what Lucie and other children in hospital have had to go through makes you realise that you should never take your health for granted, as some people don't have a choice about it. ID: 41 Child's Name: Dominic Parent's Name: Jim & Elise Child's Birthdate: 04-24-03 Email: elise_laina@yahoo.com Residence: Stevenson Ranch, CA Child's Story: At 33 weeks of pregnancy an ultrasound noted an enlarged right kidney & distended bladder, probable PUV we were told. The amniotic fluid was monitored weekly and levels were fine. Dominic was born at 37.5 weeks with no problems. His first ultrasound showed not PUV but duplicate collecting system on the right kidney, which had mild to moderate hydronephrosis. The lower pole was obstructed at the bladder causing the reflux on the kidney and the distended bladder. Dominic was transported to Children's Hospital Los Angeles via ambulance and operated on at 22 hours of age; surgeon performed a ureterostomy. He was on Keflex and at 3 weeks of age we noted mass amounts of green discharge from his stoma, foul odor and he had a fever of 101. Upon admittance to the Peds floor at Valley Presbyterian Hospital his urine culture grew pseudomonas, which he contracted while being cathed for his surgery. He remained at the hospital for seven days receiving Gentamicin via IV. Ten days later he was re-admitted for pseudomonas and received 17 days of Gentamicin and other antibiotics via a Central Line. We discontinued the Keflex which stopped the discharge and odor and illness, but Dominic is now colonized for pseudomonas. We dilate his stoma twice daily (down from three). He has had regular ultrasounds and checkups with his surgeon which show continued hydronephrosis of the right kidney. Ureter reimplantation will be performed once Dominic is larger, any time after his first birthday and after a final ultrasound and other tests. He is a normal, thriving nine month old and we feel fortunate to have been blessed with wonderful doctors. Reading the stories on this website have been informative and helpful, thank you for sharing. My heart goes out to all of these families and we wish you all the very best. ID: 42 Child's Name: Kyle Reese Balen-Smith Parent's Name: Jessica and Andrew Balen-Smith Child's Birthdate: 10th Feb 2 Email: georgiepuss@hotmail.com Residence: Brisbane, Australia Child's Story: My husband and I were looking forward to seeing our childs ultrasound at 13 weeks to ease our concerns about my pregnancy, as I had previously been diagnosed with a blood clot in my uterus, and had bled on and off since my 6th week. Feeling sick most of the time, and all tests performed, we were fairly sure that the pregnancy was going well and our obstetrician showed no concerns. During the Nuchal translucency assessment, the senior radiologist was called in to see the data first-hand. My husband and I an hour later found out that our child (probably a boy) had a foetal anomaly - a dilated posterior urethra, and that the prognosis was not good. Given less than a 20% success rate and other facts, we made the heartbreaking decision to terminate the prenancy in the best interests of our unborn child. For 5 days I carried the bitterness, sadness and guilt along with my living son which at my own hand, would die. During the abortion, which was a 24 hour ordeal of suppositories, labour pains, drugs and finally a suction curette, I felt as if I was inside a living nightmare. Weeks after I still feel the lump inside my tummy, my dead son. I keep telling myself that I did the right thing, but my heart still breaks. My heart also goes out to any expectant parent going though this hell. Find the strength to carry on, even if it's just one day at a time. ID: 43 Child's Name: Odette Frances Yule- Sears Parent's Name: Dale and Olivia Yule Child's Birthdate: 6-10-2002 Email: odettesmom6102002@yahoo.con Residence: Missoula, MT Child's Story: My daughter Odette was born two months premature and was diagnosed with complete AV Canal and deudonal atresia. We were flown to Spokane for immediate surgery. When she was two months old her ductus reopened and somehow this caused her kidneys to go into complete failure. She had heart surgery for her ductus and we waited for her to pee for almost three weeks while she was on peritoneal dialysis. She started to pee eventually and her kidneys are functioning on a very small percentage, I think it is less than 20% we are in a waiting mode and trying to see if we are going to need a transplant or if we are going to do some sort of dialysis at home. This past December, my daughter, Odette got Rotavirus and became acidotic and her creatinine was at 4.4 we did not have to do dialysis this time, but we are monitoring her levels by weekly visits to the dr for blood tests. My daughter is a miracle and she has had many medical problems but her strength and love is so amazing. I thank God every day for her smile and beauty. She has a mickey button and is fed by tube completely. She has many developmental delays and is just starting to be able to hold her head up and actually turn it around and look at things on her own. She has had two shunts placed in her brain that dump into her peritoneum and was diagnosed with infantile spasms that have since resolved, but her seizures could possibly return. ID: 44 Child's Name: wyatt Parent's Name: james and danelle Child's Birthdate: 12-19-03 Email: jamesndanni@alltel.net Residence: ohio Child's Story: our son was diagnosed with puv at two weeks of age.Prior to discovering this, he was not gaining weight as he should have been but supplementing with formula was working and he was urinating so neither the doctors or us had any idea of what was really wrong.two weeks to the day of being born he developed a fever of 101 and we took him to the emergency room.urine sample showed a bladder infection and blood work showed not only a blood infection but that his BUN was 76 and Creatinine was 3.4 We went from the emergency room to CCF, and a ultrasound was done.From that they could see that his kidneys were enlarged, as well as his bladder.We were told that there could be several reasons for this and that they wanted to put a scope in him right away to determine the exact cause.this resulted in the discovery of the blockage in his urethra.they immediately cathed him.the pediatric nephrologist at the CCF was not available and so they transferred us to Rainbows where we spent the next three weeks. within days of discovering the PUV,Wyatt had his first surgery.A broviac was placed,he had a vesicostomy,a circumcsion was done,and they inserted another scope to be sure of exactly where the blockage was.an NG tube was placed when he was failing to eat and gain as well as he should of been after about a week.when he started to stabilize and it was looking like we would be getting closer to going home,we took a class on how to flush his broviac and how to change the dressing, how to insert a NG tube(my husband put in the tube that he went home in and did a wonderful job and I was so thankful that he had the strength to do so),and the last class we took was on how to give Wyatt his procrit shots.we left the hospital with a BUN of 19 and a creatinine of 1.1 Wyatt is now a little over 3 months old and is thriving.Currently his BUN went down to 34(it went up to 48 a couple of weeks ago) and his creatine level is .8 We were so exited about the .8 My husband called me to tell me and I thought I was hearing wrong.we know that at some point he will start moving in the opposite direction but for now we are o.k.the doctor says that in all likelyhood he will need a transplant some day,there's no way of knowing when.his doctor says that if he reaches minimum weight requirement for a transplant before he needs one we could possibly bypass dialysis and go right to a transplant.Wyatt's medications include zantac, norvasc, amoxicillin, and iron twice a day, sodium bicarb three times a day, and procrit shots three times a week.The bloodwork is done every other week.In a way we are glad that the PUV was not discovered at birth.The two weeks we had at home with him created a bond between the three of us and when all the tests, bloodwork,poking, and prodding were done it seemed that the two of us by his side offered some comfort.For the first few nights he was only o.k. when we held him 24/7.we stayed at the hospital with him the whole three weeks,my husband would go to work,then come back afterward.By the time we left it was like moving out of a one bedroom house, we had so much stuff.The hospital staff was amazing and very supportive and made the stay bearable.While in the hospital I discovered this web site and wanted to share our story as so many of you have done.It helped us to understand so much.Sorry this is so very,very long.God Bless. Danni, Wyatt's Mom ID: 45 Child's Name: Mason Parent's Name: Chad & Traci Payne Child's Birthdate: August 9, Email: tracipayne@yahoo.com Residence: Minneapolis, MN Child's Story: Mason was born 1 1/2 weeks early because of a few d cells and I was having high blood pressure issues. When he was born I had no amniotic fluid at birth - the ob said it was the "dryest birth" she'd ever seen. Mason was so bruised and didn't cry too much when he was born - his tummy was protruded also. They took him to the nursery where the on-call pediatrician over the phone thought he would be fine and said she'd see him the next day. They thought it was air and after she saw him the next day she thought it was the rectus muscle not closed. Mason came home after two days and we thought the worst was over. The next three weeks though he was a very unhappy baby and I just knew in my heart something was wrong. He had several evenings when he just cried all night long. He threw up so much - it seemed like he kept nothing down and I took him to the pediatrician at least 5 times and he was put on zantac and had several xrays. He wasn't gaining weight and was starting to be considered "failure to thrive". They also suggested maybe he was just "colicky". Then finally on a Sunday after barely sleeping for two days, he stopped wanting to nurse and that evening got a fever of 101.2. The fever saved his life because then the doctors were listening! It was Labor day weekend so we had no choice but to take him to the emergency room. He just looked terrible and I was so frustrated that it seemed no one would listen to us. I knew instinctively that he was very ill. Worst case scenario, however, I thought he had a twisted intestine. The ER docs were clueless on how to deal with a three week old and told us they needed to cath him, get blood, and do a spinal tap. We were horrified and felt like no one even knew what they were doing! Thank the Lord the on-call pediatrician who had told us to go in felt compelled to see Mason herself and she came to the ER and had him admitted. She took one look at him and knew he had a massive infection somewhere. After admitting us they put him on massive antibiotics and did have the spinal tap which she did. Of course it wasn't meningitis but at 1 a.m. the blood tests the ER had failed to get (renal panel) came back and his creatine was 4.9 and BUN was 109 - both fatal counts. She raced back to the hospital and told us our beautiful boy was in complete renal failure and he was transferred by ambulance to Childrens Hospital Minneapolis. My stomach dropped and I rode the 20 minute ambulance ride in the front seat listening to my son whimper and shake. He was so unstable and I couldn't figure out how this had happened? We were told later that another 24 hours and he would have died of sepsis. The next few days are a complete blur to me as I sat bedside after not sleeping for about 36 hours. After a battery of tests including a renal gram and many CT's and xrays it was discovered he had PUVS that had destroyed his right kidney and damaged his left. His bladder was also damaged and his outlook was grim. Our baby's entire life was uncertain. He had three surgeries in a week including a right nefrectomy and pylostomy. He was also septic and acquired two life threatning infections and was placed on big gun antibiotics for almost 6 weeks and lost so much blood had to have a transfusion. But amazingly by the grace of God our son survived and began to finally gain weight as he had returned to his birth weight of 8lbs 4oz. There were some days I just felt like I was waiting for him to die - it was the most horrible thing I had ever gone through and all of our lives were turned upside down. I didn't leave the hospital for almost 5 weeks sleeping on different beds every night with a pager to wake me if I was needed. My older son Parker's life was affected as well as family flew in to care for him. I would come home at night to say goodnight to him and have dinner with him, and he was my therapy through our dark days. My husband and I took turns holding Mason and spending time with Parker (our 2 1/2 year old) and also trying to comfort Mason's pain and agony. Some days it was a good day if he opened his eyes! Each morning we would wait for his daily labs to see the creatine and BUN and hemocrit numbers. It determined what kind of day we would have. After seven weeks in the hospital though - we walked out with Mason in our arms and have watched him grow and learn and each day thank God for his life knowing how close we were to losing him. We had alot of medications for him including magnesium, 2x weekly procrit injections I gave him, septra (antibiotic), iron, bicitra and prevacid for his hiatal hernia as well as the weekly lab draws and monthly nefrologist and urology appointments. But as soon as we came home we knew it was where he needed to be! He was a different baby and our miracle! I can also say miraculously Mason has not had ANY UTI's and his creatine has leveled off now at .06 which is just amazing from where we've come. He is now just on the antibiotic 1x day and bicitra 1x day with the prevacid 2x day for reflux which he is starting to show signs of growing out of. He never required an NG tube and we have had a very successful nursing relationship with formula only for the meds and now is eating solid foods. He loves goldfish crackers! He is a happy, smiling, strong, gorgeous 8 month old now with his whole life ahead of him and is also developmentally on track. We take nothing for granted with him and each day at a time knowing how precious he and his brother are to us. The boys love each other very much and no one can make Mason giggle more than Parker! Mason requires another big surgery this summer after he is 1 to reconnect his bladder which is not hooked up and has been allowed to heal as well as reconnecting his ureter which currently drain to the outside with his pylostomy. But his recent ultrasound with the nefrologist showed that his remaining kidney is actually growing with him and they are just thrilled with his progress. We are very hopeful that this will be the end of the surgery and the bladder will be restored to give him a normal voiding system without cathing. I would encourage any parent who is facing this or knows someone who is to trust their instincts as a parent. You know your child better than anyone and I have learned that I am Mason's advocate in the medical world. If you think something is wrong, speak up and do everything you can to make someone listen. The doctors and nurses at Childrens as well as our pediatrician, we can't say enough wonderful things about them as they medically saved his life but ultimately God healed our son and gave him back to us. Be strong in your faith and know that miracles happen! His future is somewhat unknown, but really what parent can say that they know the future for their child? We just pray over him and his brother daily and know that he has blessed so many who have prayed for him. Bless this site to know we are not alone. Please email us if you have questions or need someone to listen! ID: 46 Child's Name: Tobias Harrison Parent's Name: Rachel Child's Birthdate: 21 05 2003 Email: rachelh881@aol.com Residence: cornwall u.k Child's Story: my second son Tom was nearly 10 pounds so I had a scan at 36 weeks to check the size of Toby and we found that there was very little amniotic fluid left, his bladder and kidneys were full.Unfortunatley this scan was on a friday and I was told to return on monday for more tests.I returned and was told that I needed to be induced.Toby was delivered naturally at 23.24 on the wednesday. On friday we were transferred to Bristol childrens hospital 220 miles away. P.U.Vs were diagnosed.By this time he had not urinated at all, did not feed and slept all the time. I really thought we would lose him.His valves were ablated at 7 days. and we were discharged at 10 days.He did not gain weight and was put on kindergen by bottle and he responded.we gradually switched to normal formula.He is almost one and weaned ,eats for England,Today we had all his latest results his vur is three on both sides ,kidney function is 48%both sides and everything else is"normal" he weighs 21.8 pounds and is so happy.Next bloods in 4 months and mag3 at 3.5 years.It seems a long time since my smiler was so poorly that sometimes I forget his problems.feel free to email me ID: 47 Child's Name: Preston James Long Parent's Name: Beth and James Long Child's Birthdate: 12-18-2003 Email: longew@ncfbins.com or bethandjameslong@yahoo.com Residence: Coleridge, NC Child's Story: In utero my ultrasound show hydronephrosis of both kidneys, the stenographer said not to be alarmed lots of ultrasound show this when they are expecting a boy. My husband and I were worried but my doctor said everything was fine and I did not need another ultrasound. We took his word. Preston was due on January 1, 2004 but I delivered on December 18, 2003—a beautiful, 7lb 14oz 21.5 inches baby boy. The doctors said he was healthy. After he was cleaned up he had, what appeared to be dry skin on his hands and feet. The pediatrician in the hospital said –dry skin apply nothing to it. Due to the flu epidemic, my doctor asked us if we would like to stay another day or go home. We went home, 2 weeks later Preston had his 2-week check up, and his weight was 8lbs. 6oz, looked well except dry skin—this pediatrician said it was ezxema and said to use aquaphor and if it did not clear up we would be referred to a dermatologist. Two days later, my child acted sick-no fever, very sleepy, but eating well and peeing. I called the peditrican and she said I was a new mom he was fine. That night I knew something was not right. The next morning, I took him to the doctor- I was waiting on the doctor. The nurse looked at him and said- I don’t know what is wrong with him. Then the doctor walked in and flipped out- she said get to the hospital now. Off we went across the road. The ER doctors told us- he was very sick and needed to be transferred to Brenner’s children’s Hospital in Winston-Salem. My husband was en route to the hospital and my family was with me, they told us they belived his bowels were blocked, due to the distention of his belly. It was too cloudy to fly, so the critical care ambulance came to get him, I rode in the ambulance with him and my family followed. We were admitted into the PICU and the doctors told us they had to do emergency exploratory surgery. After he was intabated and he was somewhat stable he went to surgery, his doctor came out to tell us that his bowels were fine, but his kidneys were “HARD AS ROCKS”- and he had PUV. He explained what it was and told us the nephrologist and the urologist would meet with us when we went back up to the PICU. We meet with them and the PICU doctors and they explained it all- hydronephrosis of both kidneys, PUV, sepsis, toxic shock, the “dry skin” was a staph infection, it had entered his blood stream and caused the blockage to swell. They would give him broad-spectrum antibiotics for the sepsis and lasix for his kidneys. They explained that he would probably need a transplant at age one or hemodialysis, unless he really started to improve. On a ventilator for 11 days, a drug induced coma for 5 days and lots of medicine, lasix and platelets. He was urinating well and we were just waiting for the sepsis to clear up, before the surgery could be preformed. Two weeks after getting out of the PICU we were sent to intermediate care for about a week, they removed the feeding tubes and began feeding him by bottle, and he was picky about eating. Then when we went to a regular floor he had his valve ablation, surgery went well and a week later we went home weighting only 7 lbs. and on Bicitra, Bactrim and Iron. We have had very good visits, no UTI, and now weight 16lbs 2-oz. Preston has grade 5 reflux, but the doctors feel it may correct itself, we will wait and see. Preston is a miracle in all the doctors’ eyes and ours too! He is doing very well and we hope and pray he will continue. We are still on the same medicine we were on when we left the hospital. Please fell free to email anytime. ID: 48 Child's Name: Hunter Parent's Name: Ron & Jenna Child's Birthdate: February 1 Email: jennahuntersmom@yahoo.com Residence: Racine, WIsconsin Child's Story: Hunter was diagnosed with PUV's in utero at 19 weeks gestation. They decided to insert a shunt due to very low amniotic fluid. All went well until about 28 weeks when fluid again started to diminish. They saw that his kidneys were very small. at 36 1/2 weeks I delivered Hunter 5 lbs 13oz 19 1/2 inches long. His kidneys were working at birth. They scoped out his Posterior Urethral Valves at a week old and ever since has been able to pee normally. At three weeks old we took him home with monthly lab works on his creatine and BUn. At ten months old we decided to put a G tube in so that at night he could get what he didn't eat during the day, also we had his pertineal dialysis catheter put in his creatine was on the rise. In Febrary 2004 we started peritinal dialysis at home ten hours every night. He is doing really well on this. It's not as bad as we thought! He is now 15 months old and his transplant is scheduled for July 29th. I was the match so they are going to take my kidney! Hunter is a lovable boy who despite having renal failure is in great health. He hasn't had any developmental delays and continues to strive every day. He is a happy bouncing running toddler who is the light of our world! ID: 49 Child's Name: Jessica Parent's Name: Shirley and Jose Child's Birthdate: August 08, Email: momw4kids2001.yahoo.com Residence: 325 Imperial Beach Blvd, Ca. 91932 Child's Story: Since the age of 9mo my daughter Jessica has had to struggle for her life. She has had menengitis 3 times in one year. At the present she has the following seizure disorder, hydrocephalus, mondini's syndrome, vp and lp shunt, balance disorder, craniel vault, csf leak and she is totally deaf. She has had more than 30 surgeries to her body and head and brain. Most of the surgeries have been to her head. One of the surgeries lasted 14 hours. 2 years ago she suffered to the point I prayed for god to take her and let her poor body rest she was so tired. The doctors gave her a less than 50% chance of survival. She had so much pressure around her brain that it actually left its spot in her head and started to travel down in the back of her neck. She stopped breathing and was rushed to surgery to release the pressure. There was no accident or injury prior to this. She just woke up one day and was on her death bed within days. The doctors actually had to make her whole head one inch bigger something I never even knew was possible. After that surgery the doctors told me she might lose her eye sight for 3 or 4 days because of the swelling. So can you imagine my baby was already deaf now she can't see. Those 3 days were like living in hell and watching your baby suffer like never before. I have so much more to tell. Shirley ID: 50 Child's Name: Maximus Parent's Name: Sophie and Martin Child's Birthdate: 13/11/03 Email: sophiemuncaster@yahoo.com Residence: London, UK Child's Story: Max was born nearly 7 months ago after a traumatic pregnancy - he was diagnosed with probable PUV at the 20 week ultrasound and we were monitired closely until delivery - I was induced at 38 weeks and Max was just over 10lbs! He was taken to the NICU where he stayed for nearly 2 weeks - at 8 days old they ablated the valves and we took him home 2 days after that...So far we have had no urine infections and have just finished having the renal DMSA, ultrasound and other tests the results of which are no function in his right kidney, but the left "looks good" (why don't Dr's ever commit?!) We have been told that the right kidney will need to be removed when Max is 3 years old. He is on trimathroprim daily and is a gorgeous happy baby boy. ID: 52 Child's Name: Christian Turney Parent's Name: Chris and Leandra Child's Birthdate: 11/23/2003 Email: turnchrist1@aol.com Residence: alabama Child's Story: At 37 weeks Christian was diagnosed as having bilateral hydronephrosis and hydroureters. He was said to have only a partial obstruction because the amniotic fluid level was normal. My obgyn decided to do a c-section at 38 weeks. When he was born the attending pediatricians said he was fine because he voided but later that night and into the next day we noticed that the urine out put was no where near normal even though he was voiding. The pediatricians assured us that everything was fine to to take him to the pediatric urologist at 1 month for examination. Because of the diagnosis prior to delivery and a prescheduled appointment we took him to Children's hospital when he was 2 days old. We were told by the urologist there that if we had waited a month that he would have gone into kidney faiure and died. An attempt to place a catheter into the penis failed due to the non-dissolved "flaps" in the urethra. He then had a very tiny tube placed in his abdominal wall that allowed the fluid to drain directly out. He seemed to be in no pain. He was found to have only one functioning kidney. The other had so much damage before birth that it did nothing. At 1 week he had surjury to correct the PUV's by cystoscope which removed the obstucting "flaps". After the surjury he voided normally. His right kidney has no funtion but may be used if he has to have any other reconstructive surjury to ureters or urethra by using the valves from that kidney. If no such operation is needed the kidney will be removed and he will have only the one partially working kidney. The doctors said he may stuggle while growing because the one kidney will have to play catch-up with the rest of his body and he will have limitations on activities but otherwise should be ok. ID: 53 Child's Name: Nicholas Parent's Name: Lisa Child's Birthdate: 6/09/99 Email: papaprincess17@aol.com Residence: USA Child's Story: My nephew turned 5 years old this past June. Just after his birthday he had a severe bladder infection which led to a series of kidney tests. After an ultrasound and vcug, they realized that Nicholas was born with a malformed kidney (a birth defect). One kidney is at 100% but the other is at 20%. Upon his first few tests, the doctors said nothing about further treatment. Now they are suggesting steriods and further tests to check the less functioning kidney. Please feel free to email me - my sister is looking for people who are in this situation. It is terrible in any case, but when it is a child, it's a whole other story.... I will keep all of you in my prayers..... ID: 54 Child's Name: Jarom Jason Farr Parent's Name: Jason and Rhonda Child's Birthdate: 5-28-04 Email: RhondaFarr@hotmail.com Residence: - Child's Story: At a 20wk routine ultra sound we noticed concern in the songrapher's expression. She explained that the fluid level was very low if any at all. Cystic kidneys and dialated ureters were also noticed. Our Ob. sent us to see a perinatoligist in Knoxville. In Knoxville we were given little hope. Our baby was diagnosed with PUV's, one of the most severe cases the doctor had scene. The perinatoligist told us the chance of our child living was 1 in 100. He told us we are young and could have another baby. We were strongly encouraged to terminate the pregnancy. My husband and I were not comfortable with that alternative. Our doctor, against his judgment, agreed to see us routinely to drain our son's bladder and check for kidney function. We contemplated the surgery to insert a shunt into the baby's bladder to keep it drained continually, but found little support from anyone. The doctors were leary of doing the surgery and some thought it was a bad idea due to research and previous experience. Long story short, no one was willing to perform the surgery and we were a little scared of it ourselves, so we proceeded to do what we felt was best. Every other week we would go have a needle inserted through my stomach into the baby's bladder to extract the urine. Some of the urine would be sent for testing. For the first few weeks the function was low to none. A friend told me about a supplement that had helped adult patients with kidney disease called Reliv. I began drinking the Reliv shake twice per day and eventually the numbers went up(I'm not sure it was the shake that helped, but once the kidney function began to improve I didn't miss a shake). The kidney funcion was improving, but we were still without amniotic fluid. Now the concern shifted from kidneys to lungs. The Dr. began injecting saline into my womb to promote lung development. The first two times the procedure was great and I was filled with so much hope. The third time the fluid was injected I was having a non-stress test done and I felt wetness like the fluid was leaking out. I stood up and all of the fluid came out. My water had broke. I was told to wait a couple of weeks to see if the amniotic sack would seal back. Apparently it can seal back if the break is caused by a needle stick. I had been stuck so many times in the same place. Due to the lack of fluid the baby didn't move from the right side of my uterus, so everytime his bladder had to be drained from the same general area. I came back in two weeks and more fluid was injected. Everything seemed fine then just as I was about to leave I began losing the fluid again. About a week and a half later I began having pain. I was not extremely alarmed. I had cramping often due to the numerous procedures. The pains got more intense so we decided to go be checked. I was 33wks. at this time. When I got to the hospital to be checked I was 8cm. dilated and 90% efaced. Jarom was born within less than an hour. When he came out he looked just like his big brother. He tried to cry and I will never forget that sweet sound. He was 19 inches and 6 lbs. 1oz. He didn't look like a preemie at all. Jarom was on life support due to severly underdeveloped lungs. He lived for about 5 hrs. We were able to hold him in our arms and tell him we love him. We got to see his chubby little face and all of his soft hair. I wouldn't trade those memories for the world. Our son did not live, but I find so much peace in knowing we did all we could. There were so many hard days and times I felt like I was having to fight to save our child. I would get so mad because I felt like I was the only one who cared if my son lived. It was a hard road but my eyes have now been opened to so many things I never thought about before. I will never take another normal smoothe pregnancy for granted again. I pray for you strong mothers who work so hard to take care of the special needs of your children. I KNOW SPECIAL CHILDREN ARE SENT TO SPECIAL FAMILIES!!! ID: 55 Child's Name: Debprah Price Parent's Name: Jean & John Price Child's Birthdate: 04/04/1972 Email: debbie.evans6@btopenworld.com Residence: United Kingdom Child's Story: Well, it all started when I was pregnant with my first child in 1996, I developed severe pre-eclampsia. However, after my son was born, my blood pressure was increasingly getting worse, so they decided to do some tests on my kidneys, the first one they done was a scan, which confirmed I had a very enlarged kidney, but they didn't know what was causing it. Eventually, after several tests they decided that I had a blockage in the ureter where the it joins with the kidney, they put several stents in, but they only worked for a few weeks then the ureter would close over again. I was sick and fed up, I felt really ill too as I was getting constant kidney infections and losing a lot of blood. I was then referred to a Dr Tolley at Western General Edinburgh, who is one of the top Urology consultants in the UK. He tried to do reconstructive surgery, which should have lasted 5 years and it didn't even last 2 months. They decided they would take me in again December 2003, and when they were operating they noticed that my left kidney was that badly damaged, that it had to be removed, I have never looked back since. ID: 56 Child's Name: Eric LaBrake Jr. Parent's Name: Eric and Jamie Child's Birthdate: 12/30/1996 Email: milkmaider2000@yahoo.com Residence: No.Law.Ny, USA Child's Story: Eric is a 7yr old who was born by induction on my due date to the fact we knew he had puv's and we live in NY state and he needed to be born in Burlington Vt. Because that is where the specialist were. When Eric was born he was completly black due to the lack of oxygen going into his lungs. They collapsed right after birth. He was put on a ventilator and we were told that he nedded to be shipped out to a children's Hospital in Penn. because he needed to be put on ECMO (extra corpral membrane oxygenation) also known as a heart and lung bypass machine. When the jet team got there they told me and my husband that they didnt think that Eric would make the flight. Eric being the fighter that he is made the flight. They put him on ECMO along with a ventilator. We we told that there isnt alot of babies that make it off ECMO. Eric beat the odds and came off ECMO in 7 days. He was on a ventilator for 2 weeks. Once weaned off the vent he underwent surgery to resect his puv's. The following day it was found that he had bilateral ingunial hernaia's. He had those repaired. After 4 weeks in the NICU in children's hospital of Penn. he was able to come home. After a few weeks of being home it was noted that his puv's were back along with the hernia's. He underwent surgery for those at around 3 months. When Eric was 2 They took him off his kidney medicine aying they thought all was fine. He continued taking a daily regiment of antibiotics to prevent any uti's. When he was 3 they found out that the puv's had grown back again. They tell us that usually when you have them resected that they never grow back, Well his did 3 times infact. When he turned 3 yrs old his urologist in Vt. said that his bladder was shrinking and he needed to be seen by a urologist in Children's Hospital Boston. We went there. Its about 6-7 hrs from were we live. He went and saw the urologist there who said he was a perfect candidate for a bladder augmentation using his own bladder tissue. So surgery was set up. The day of his first surgery which was to take a piece of the bladder and have it grown in a lab for 4 weeks. They also made a mitroffanoff stoma near his belly button in which we cath him every 4 hrs. They also did a mega ureteral repair and reimplant on both sides. This all took about 16 hrs. in the operating room. He went back in 4 weeks and had the new piece of bladder attached to make it bigger. One week before we were to come home his kidney's stopped working. He went in for emergency surgery to have neprostomy tubes put in both kidney's. The doctor's arnt sure why the kidney's stopped working. He mananged to pull the right neph tube out twice. We had it puck back in the first time. The second time the doctor said he would do just fine with out it. The left neph tube he wore for 8 more months. The Doctor's at that time said everything was fine. It worked ( the augmentation) This past summer we were told the augmentaion didnt work. He needs to do it again this time using a piece of his intestines. They said the surgery will take 18-24 hrs. We went to a nephrologist and she told us that Eric is going to need a kidney transplant in the future. Also we need to start learning about it now. This past month Eric has had 3 kidney infections. They are going to change his antibiotic to try to prevent anymore infections. We also just found out that he is enemic and needs an iron supplement. Eric's meds are sudafed 2x's a day, Detrol la 5 mg. , bactrim 75mg 1x a day. and some kind of anemic medicine ID: 57 Child's Name: Cami Parent's Name: Cari & Matt Child's Birthdate: 10/26/02 Email: mclangley@earthlink.net Residence: Littleton, CO Child's Story: Our story sounds a lot like those I've read on this site. My daughter was diagnosed with hydronephrosis and megaureters in utero. At 35 weeks, they induced me. We had seen a pediatric urologist before she was born and he scheduled an U/S and VCUG a week after she was born (no blood work). Her kidneys and ureters were extremely dilated. He sent us home and scheduled a renal scan for a couple weeks later. The renal scan looked so strange that the radiologist sent us home 4 hours later because she didn't think it worked. Cami was vomiting and I called the doctor's office, but they all said that since she was wetting her diapers, she was fine. Like many of you other mothers, I just had a terrible feeling. I knew something was wrong with her. I called the pediatrician's office for the next couple days and they kept assuring me that she was fine because there was no fever and she was urinating. I took her in anyway because I knew she was sick and the doctor took one look at her and had us rush to the ER at Children's Hospital. She was acidodic and had a UTI. Her electrolytes were so messed up that she was in the NICU for a week so they could stabilize them. She also had renal insufficiency; her kidneys function at about 30-40% of normal. At 7 weeks of age, she was admitted to Children's for another week with sepsis. At this time, our second pediatric urologist performed surgery to correct a hernia and gave her bilateral ureterostomies. At 3 months of age, Cami began vomiting daily for 9 months and stopped nursing. I pumped milk for her and kept eliminating foods from my diet to try to find the culprit. After many, many months I found that she has trouble with dairy, soy, berries, corn, and eggs. She had UTI's almost constantly for that next year (2 a month). Her urologist wasn't concerned and wanted to wait until she was 4 or 5 to correct her anatomy. So in October of 2003, I took her to a THIRD pediatric urologist. In February, she had her fifth surgery where he performed bladder augmentation using her bowel and made a Mitrofanoff to catheterize her bladder. Her ureters were both ectopic, so her bladder had never been used. Her urethra wasn't developed, so she will be catheterized through the Mitrofanoff in her abdomen for life. She has been such a different girl since this last surgery. We always thought she had a bit of a temper because she was so unhappy, but she is the happiest little girl since this surgery! She finally laughs and plays. Finally discovering the food allergies has made a big difference too (corn was the tough one to figure out). Her nephrologists think she will eventually need a transplant, but not for years. We took her off her prophylactic antibiotic and she has had a couple UTI's in the last month. She's back on daily antibiotics again and hopefully she can fight off the infections again. I respect all of you parents so much for your strength. It's nice to know there's a community out there and that we're not all alone. If anyone would like to email me or ask any questions, I would welcome it. I would have loved to have someone to talk to who'd been through this. Good luck to all of you. ID: 58 Child's Name: Faith A. Riddick Parent's Name: Millie & Linwood Riddick Child's Birthdate: 11/12/02 Email: Millie_955@hotmail.com Residence: New Jersey Child's Story: Our story is similiar to the ones we have read. My daughter was diagnosed prenatally with bilaterial multicystic kidneys. Decrease amniotic fluid that continued to decrease as the pregnacy continued. So for this reason they thought she would either be stillborn or pass shortly after. Which must of been the longest days waiting the unknown. Thank God, and only through our Faith in the Lord. My daughter was born 11/12/02, 5lbs 2oz and 17 1/2 inches long. She was 5 weeks premature. Faith had no lung issues. However, she did have only a 4% kidney function. She was placed on pd at 10 days old. To sum a long story up...When she turned 1 year old. She received a kidney transplant. Her Grandma was the donor. Her neuphrologist expect to grow up pretty normal. She is doing great, THANK GOD!! She takes her anti rejection drugs. She just turned 2 and she has been such a blessing to us. Currently she goes to feeding therapy so she can eat on her own and the NG tube can be removed...Other than that she looks and acts like a normal two year old. Please feel free to contact me Millie_955@hotmail.com ID: 59 Child's Name: Serena Kroon Parent's Name: Kevin and Gina Kroon Child's Birthdate: 1/21/03 Email: dakroons@netzero.net Residence: Appleton, WI Child's Story: Serena had hydronephrosis diagnosed while in utero at 30 weeks with no aminiotic fluid. My wife spent 9 long weeks in the hospital on permanent bed rest. Serena kidneys were very large and full of fluid she had bilateral blockages in ureters. Each week they drained the larger kidney in utero. Upon c-section birth at 39 weeks both lungs collapsed and she was placed on a ventilator. At 1 day old she was flown to Children's Hospital of Wisconsin in Milwaukee, WI. Where she was in the NICU. At two weeks old she started Peritoneal Dialysis. She has had two plylostomies which allowed her kidneys to drain out her back. We had two instance of peritonitis due to her catheter coming apart at about 1 year old. She had bypass surgeries on ureters and the closing of the plylostomy one at 1 year and one at 16 months old. She underwent a living donor transplant from Gina (Mom) at 20 months. The kidney did not function and had to be removed. 2 weeks after replacing the dialysis catheter she contacted a fungal infection. At that time the catheter was removed and dialysis stopped for 8 days to clear the infection. 45 days later the fungal infection returned and the catheter removed. Another 5 days went by before they had to reinstall the catheter and r