Personal Stories

The following stories were submitted by other families who are dealing with PUVs or another congenital urologic/renal problem. If you would like to submit your story, please click on the Submit Personal Story link in the menu to the left.

Aden


Parent's Name: Roxanna and Terence Alcantra
Child's Name: Aden
Child's Date of birth: 02/05/2009
Email: roxxee99@yahoo.com
Location: San Diego, CA

Diagnosis: Posterior Urethral Valves (PUV), End Stage Renal Disease (ESRD),
and Short Gut Syndrome

Story

Aden Alcantra, Our Miracle Baby!

Our little one, Aden was diagnosed with having hydronephrosis, dilated
ureters, and a dilated bladder therefore resulting in Posterior Uretheral
Valves in womb when he was 30 weeks old through an ultra sound. We were given
the news that no parent wants to hear- our son could be a stillbirth, or
worse yet he could die shortly after birth.

Aden was born premature at 32 weeks old on Feb. 5, 2009 at UCSD
Medical Center. He weighed 4 pounds 9 ounces. Our poor baby had so much
extra fluid (90 ml of urine) in his little body that it wasn’t letting him
breath. As soon as he was born he was rushed out of the room. However,
before he was rushed out, I heard all I needed to hear- a tiny spontaneous
cry. That cry meant the world to me. I had tears in my eyes as I thought
about what a strong willed baby we had. The doctors tried to intubate Aden
three times, but were unsuccessful. Thankfully, they were able to intubate
him on the fourth try. I am so grateful to them for not giving up on Aden.

From the first day that Aden was born I knew in my heart that he was a
fighter. Nevertheless, I remember how afraid I felt to touch his little hand
when I was finally allowed. I am grateful that I did because that is how he
showed me that he was an extremely strong boy and that he was not going to
give up. He let us know that he was ready for the challenges that lay ahead
of him. He grabbed onto my finger and held on so tight. It was such an
amazing moment. I knew God was with us and he had given us a special angel.
After that, I knew that he was going to be alright.

Two weeks later, on February 14, 2009, he was transferred to Rady
Children's Hospital. Aden‘s obstructive uropathy lead to pulmonary
hyperplasia. Eventually, he was diagnosed with having, posterior urethral
valves, end stage renal disease, bone mineral density disease, anemia,
hypothyroid, and short gut syndrome amongst other diagnosis’s. We were
again told that he might not make it, and that if he did he would have a long
road ahead of him. There were certainly moments when we had our scares and
times when some doctors were ready to give up on Aden, but we never did.

Granted, Aden has been through some extremely difficult times, ( over
16 operations, and too many procedures to count) but he has managed to
overcome each and everyone of them. Seeing our son continue to persevere each
and every day gives us the strength that we need for him.

Fortunately, after spending 7 months in the hospital (6 of them in the
NICU), Aden was finally able to come home on his actual 7 month birthday,
September 5, 2009! We were finally together as a family! What an immense and
joyful feeling it was to have our little "precioso" home!

Aden has now been home for 18 months and is making good progress. He
is on hemodialysis four days out of the week for three hours a day at Rady
Children’s Hospital. Our “big” boy was officially put on the kidney
transplant list on April 5, 2010! He is on medical hold until he makes his
goal weight of 10 kilos and has his last surgery. Currently he is weighing 11
kilos, but still needs his last surgery, so just a little more to go.

Yes, Aden still has a long road ahead like the doctors told us, but he
is doing well, and all thanks to the wonderful doctors, nurses, family, and
friends that we have. Everyone’s love, support, and kindness are
definitely the reasons why Aden is so fun loving. We are truly blessed to
have such a resilient, happy boy!

Brayden

Parents Name: Jenny and Kyle Goolsby
Child's Name: Brayden
Child's Date of Birth: 2/24/2009
Email: jennygoolsby328@yahoo.com
Location: Cookeville, TN

Diagnosis: PUV, Bilateral Grade V reflux, Peritoneal Dialysis since 2 weeks old, GERD, Transplant April, 2010

Story:

February 24, 2009 was a crazy, wonderful, amazing day. That was the day that our son, Brayden Jay, was born. Born at 33 weeks, he was 7 weeks ahead of schedule. He came into the world early because my amniotic fluid was completely gone and he was in distress. I was only allowed to see him and hold his little hand for a few short minutes before he was taken to the NICU. He was "the fat kid" in the NICU weighing 5lb 5oz.

Our story started at 19 weeks when on ultrasound we saw that there was a problem with Brayden's bladder and kidneys. We were sent to a "high-risk" OB doctor and they did more ultrasounds. They told us it was 1 of 2 things. He said that either Brayden had Prune Belly Syndrome or Posterior Urethral Valves. He said that we had about 2 weeks to decide if we wanted to terminate the pregnancy. He told us that either diagnosis was not good and both could be very bad. We told them that there was no way we would terminate the pregnancy and he said come back in 2 weeks to see how things are going.

We had very detailed ultrasounds every 2 weeks. This group of doctors came to my town from about 2 hours away. They are from a big medical center and just did "consults" in town. I wanted to deliver at my hospital because I trusted my normal OB, Dr. Gernt and didn't want to have to worry about getting 2 hours from home to the hospital. They told me all along that as long as things were going good, that it would be fine and we would just see what happened when he was born. At 28 weeks, my fluid began to drop slowly and I was having fluid checks every week. We were getting into the worrisome zone but nobody ever mentioned anything about it. The last time that I saw them was Monday of my 32nd week.

Tuesday of my 32nd week I went to see another specialist that comes to town once a week. Dr. Hill, was from East Tennessee Children's Hospital in Knoxville, TN. I went in and we talked about several things but the one thing that he told me was that even if my fluid held out to make it to full term, that Brayden would need a NICU and very close monitoring. That scared the crap out of me and made me wonder if the other OB docs knew what they were dealing with. Dr. Hill told us about another baby that had been born just 3 days before and had the same issues.

Wednesday of my 32nd week, I had another AFI (amniotic fluid index) and it was down to 7. Normal AFI is 10-25. This is measure of how many cm of fluid can be measured around the baby. They measure in 4 quadrants and add them together. I was supposed to come back to my regular OB on Friday and see if it had dropped anymore. On Thursday, I wasn't feeling so good and Brayden wasn't moving as much as normal, so I had another AFI done and it was down to 6. Dr. Gernt sent me for steroid shots to boost Brayden's lung maturity. She called her friend in Knoxville and they squeezed me in on Friday to see them in their office.

Friday, we saw Dr. Stevens. They did another round of very detailed ultrasounds. The ultrasound techs were whispering to each other and ignoring us. We finally asked them what they were whispering about and they tried not to tell us but I made it clear that I am a nurse and know a lot more than they think so they better start talking about what they see. I had had so many ultrasounds that I knew what I was looking at. When they finally did tell me what they were looking at, I told them that the measurements that they were getting were "normal" for him. I am a numbers person and can remember things very easily. I told them all of his numbers from a few weeks back and they then called in Dr. Stevens. He said that my AFI was now at 5 and I was to go home that weekend, stay off my feet, drink lots of water and come back Monday with a bag packed to stay.

Needless to say we were scared to death and happy at the same time. We were just planning on having a baby next week and coming home in just a few days. We never thought about the prematurity issue. I had friends that had babies at 33 weeks and they came home just a week or so later. No big deal, we were having out baby!!!

Monday, February 23rd 2009, we went back to Dr. Stephens and had yet another ultrasound. He put me in the hospital and told us that we would try to get me to 34 weeks so that Brayden would do better lung wise. We were sad but glad and told all of our family to stop putting their lives on hold for another week. Kyle and I played cards and watched TV and just hung out in the hospital room for the rest of the day and that night. Brayden was being monitored for 4 hours at a time and was looking pretty good. His heart rate was doing pretty much what it was supposed to.

Tuesday morning, February 24th 2009, I got up, took a shower and they came to get me for another ultrasound and fetal monitoring. We did the fetal monitoring first and Brayden wasn't doing so good on the monitor. On the monitor strip, the babies heart rate should go up at least 15 beats per minutes at least 2 times within 15 minutes. This wasn't happening at all. His variability was almost nothing. His heart rate was staying at 142. They "buzzed" him with a vibration stimulator (a vibrating thing they stuck to my belly) and that didn't work either. They tried not to alarm me, but I knew what was going on. They then sent me to the ultrasound room again and my AFI was down to 3. Let me tell you it took a lot of looking and me rolling over and trying to move him to find that 3 cm of fluid. We were at 1 when we found a pocket down by my left hip bone. Dr Stevens then came in and introduced us to Dr. Roussis. He would be our doctor today. Dr. Roussis came in and said, "okay, its 10 am now, we are going to have a baby at noon today". Whoa!, Did he just say we were going to have a baby today? Yes, I believe he did!!! I was scheduled for a C-Section at noon. Needless to say, we were frantically calling all of my family. My mom had to drop what she was doing and race up there to get to see me before we went back. Knoxville is 1.3 hours from our house and is an hour ahead, so my mom had about an hour to get there in time.

They took us over to the labor and delivery department and got me ready to have Brayden. The neonatologist came over and talked to us about what to expect and what would happen after he was born. I don't remember much of it because they had given me some pre-op medications and I was loopy. I wasn't supposed to be loopy but I was when Dr Prinze was there. This was the first time that anyone had said that he would be in the NICU until his due date which was 7 weeks away.

At 12:15 my Mom got there and of course, I fell apart. My mom was scared, I was scared and Kyle was scared. We didn't know what was going to happen in the next few days of our lives. At 12:20, they took me back, got my spinal in and Kyle got dressed. 12:50, Brayden Jay Goolsby came into this world screaming and peeing all over everybody. I think that was the best moment of my life. I heard my son scream, and heard the doc say he was peeing all over everybody! Brayden's bladder had been huge most of the time, it took an unbelievable amount of pressure to make his bladder empty. That's why my fluid level was down, all of the fluid was in his bladder!

They brought him to Kyle all wrapped up, sticky and all squished faced. He looked like a little old man. His eyes were wide open and I saw the 2 loves of my life then and there. THAT was the best thing I had ever seen. I got to see him for just a minute and they took him into the stabilization nursery to get him ready to go to the NICU.

I then started to feel some pain in my belly where they were working on my uterus. My spinal was wearing off faster than they had expected, so they gave me enough drugs to get me thru it. The next thing I knew, we were rolling back into the holding room. The NICU team rolled him over to me in the isolet so that I could see him one more time and actually get to touch him this time. It was amazing. Although my spinal had worn off and I was in major pain, I didn't feel any pain for those few moments. All I saw was my beautiful, 5lb 5oz, 17in long little baby. Eyes wide open, breathing on his own and wiggling all over. He was beautiful. I sent Kyle to the NICU with him and I rested.

Kyle stayed with him the whole time that they would let him. I went to my room and slept a while until Kyle came back. At 8pm, the NICU opened back up for visitors after shift change. I was still kinda numb and had a foley catheter in but I was bound and determined to go see my baby boy. The NICU was 2 blocks away in another hospital, we had to go under the street in a tunnel to get there. Kyle rolled me in a wheelchair and I went to see my baby boy.

Any parent knows the feeling of seeing their baby for the first time. I'm sure most parents of NICU babies are freaked out by all the tubes and wires and alarms going off. I, however, didn't see anything but my baby boy. Laying there in his tiny little bed. Breathing. That is when he got his nickname. The first thing that Kyle and I both said to him was "Hey Buddy" and it stuck. Yes, he had several tubes and drains and wires but I knew that was going to happen so I didn't let it bother me. I sat there for a few hours until Kyle convinced me that we needed to go back to the room to rest. It had been a long day. We would see him in the morning.

The next morning is when everything started to sink in. We saw Urology, Nephrology, Surgery and Neonatology doctors and were told what we were looking at. His labs that morning were higher than yesterday, his kidneys didn't seem to be working well. We would just have to wait and see how he was doing in the afternoon. That became the story for the next few days. On Friday of that week, after Buddy's first VCUG, Dr. Hill came and said that as long as everything went well over the weekend then on Monday we would do his first surgery to remove the PUV.

Monday came and surgery went well. When he left us he was a whole baby. Dr Hill wasn't sure if he was going to be big enough to get the scope down his penis or not. If he couldn't then the next option was a vesicostomy which is a opening into his bladder directly from the skin that the urine would drain out. We were not looking forward to that but we would take anything that we got. Luckily, he was able to resect the valve. He said it was a major blockage and it was a miracle that any urine got out at all. There was only about 5% that was not coved with valve. It was one of the weirdest he had ever seen.

The next few days we were watching labs very closely. His creatinine had climbed up to 2.6 by day 12 or so and his potassium had climbed to 7. Normal potassium levels are 3.5-5.5, after about 6 you get into the danger of his heart stopping. This, we took care of with medications and scheduled him for surgery for his PD cath.

On day 14 of his little life, he had surgery again to place his PD cath. This is a tube that goes into his belly and sits in between his guts. We would put fluid into his belly and the fluid would draw off the extra toxins that his kidneys could not get rid of. The other baby had his PD cath put in just a few days before. He had been on dialysis for about a week now. This was the first time in 10 years that the NICU had done dialysis, it was a learning experience for all of us.

Brayden spent a total of 40 days in the NICU at East TN Children's and then we transferred to University of Tennessee Medical Center. Dr. Malagon is the only 1 of 4 pediatric nephrologists in the state that did dialysis. We went to UT, got put on his dialysis machine that we would go home on and learned what we would be doing for the next few years. We were told that he would need a kidney transplant but wound not be big enough until he was a year old and 10kg(22lb). When we left the hospital, Brayden weighed 2.7kg. We had a long road ahead of us.

Now, a year later, Buddy weighs 9.7kg and we are scheduled for transplant on April 6th, 2010. This is exactly 1 year from the day we started dialysis at UT. We have been thru 3 rounds of peritonitis (infection in his belly), 3 PD caths, and a total of 9 surgeries. He is on dialysis 8-9 hours at night. He doesn't have much of an appetite so when he doesn't want to eat, we put it down his feeding tube. He is the happiest baby in the world and the best natured kid. He is very smart. I say to him all the time, "what God took away from your kidneys, he put into your brain". He is a little behind in motor skills but we see physical therapy every week and he will catch up after transplant to "normal" very quickly.

He is our miracle baby. No, he will never be "normal" by normal standards but he is our normal. He is the best thing that has ever happened to me and I wouldn't trade a minute for anything in the world

Bryan

Parent's Name: Shelly and Scott Dowdle
Child's Name: Bryan
Child's Date of birth: 4/11/1992
Email: shellyd@bryanskidneypage.org
Location: Belgrade, Montana

Diagnosis: PUVs, grade 5 reflux, peritoneal dialysis 4+ years, kidney transplant 6/2007, autism

Story

We found out that Bryan had PUVs when I was 30 weeks pregnant. I had my first ultrasound and it showed almost no fluid around him and severely enlarged kidneys, ureters and bladder. We were told that he would be stillborn or die soon after birth.

Amazingly at 35 weeks he was born and his lungs had formed enough for him to only need a ventilator for about 4 hours. He was born with kidney failure and had his first surgery at 4 days old to place a vesicostomy. When he was 3 weeks old, the doctors didn't think we should treat him. They said he needed dialysis and babies didn't do well on dialysis.

We were too stubborn to listen to them, so we moved him to a different hospital in a different state. After we moved him, he started to improve a little and after having bilateral pyelostomies, he was able to avoid dialysis until he was 10 months old! He had an NG Tube at first, but once he got to come home (almost 2 months of age), he was eating his minimum of special formula all by mouth.

At 10 months old his doctors felt that it was time to start dialysis. His labs were pretty bad and he was not growing very well. He started peritoneal dialysis when he was just over 10 months old. At that time they also removed his PUVs, removed one non-functioning kidney, reimplanted the remaining ureter, and closed all his ostomies. He had some trouble getting started, but after three catheter placements, he was finally on PD and doing well.

He was on PD for just over 4 years until the doctors felt he was finally ready for a transplant. We had to fix his bladder first, but thankfully we narrowly avoided having bladder augmentation, and at the age of 5 years, Bryan got his transplant.

There has been a lot that has happened since then, an episode of rejection, a few other surgeries and procedures, but he's now almost 21 years old and 16 1/2 years post kidney transplant! He's doing great, especially for a baby that wasn't suppose to live past birth!

Claus

Parent's Name: Clint and Josie Robinson
Child's Name: Claus
Child's Date of birth: 07/25/2005
Email: josie.robinson3@gmail.com
Location: Rockford, MN

Diagnosis: Posterior Urethral Valves

Story
Different from most of these stories, we did not know of any problems with
Claus until he was born. After almost 2 days in the Level II nursery, he was
moved to Children's where he was diagnosed with PUVs. He spent 6 weeks
there, had a few rocky moments and one day after he turned 6 weeks old, we
brought him home and never looked back.

Since he was born, Claus has had 2 surgeries, 4 hospital stays, hundreds of
sets of labs and tests and taken thousands of doses of medication. He has
also learned to walk, talk, draw, imagine, laugh and all the other millions
of things children do by the age of 5. He is a beautiful little boy with a
sweet and patient disposition. No one ever knows there is a thing wrong with
him unless he needs them to know.

Currently, we are giving Claus the opportunity to do what he can. He does
take a decent amount of medications, but he grows and develops on his own.
His brand of renal failure produces excessive amounts of output and therefore
requires a lot of intake. He is at very high risk for rapid dehydration, so
we have to watch that. His future will include a transplant, but for now, he
is holding his own. When Claus was 1 week old we were told his need for
dialysis was imminent and transplant would be needed at 1 year of age. Claus
is now 5.5, he has never needed dialysis (probably won't) and still has his
own two kidneys, crappy as they are.

Just a few more things, he is looking forward to starting kindergarten this
fall and would really like to be a pirate when he turns 16.

Cole

Grandparents Name: Hilda
Child's Name: Cole
Child's Birthdate: 11/10/98
Email: talksum2@comcast.net
Location: Southampton, NJ
Diagnosis: PUVs, urethral stricture


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, St Christopher's in Philadelphia. 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 whether 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. Cole's Urethra continued to close a bit every so often and he had to go back for repeated fulgurations (removal of tissue that grows back after surgery) probably around 12 different times.

In 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 abandoned the idea on both occasions. 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 success. He has not been back since he was 5 for stricture removal but takes a long time to void.

Cole also has Grade V reflux and it has been mentioned that a re-implantation of the urethras would be a good idea. However, a second opinion from another doctor suggested otherwise so we did not reimpant them.

Cole's bladder may need augmentation at some point and a Mitrofanoff has been mentioned and it is something that we may have to consider in the future. Cole has about 45 percent kidney function and takes Sodium Bicarbonate to help with Renal Tubular Acidosis. He has been diagnosed 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 since he was first operated on and continues to take it and he is now 11 years old. He also took DHT to help with is bone growth.

Cole used to gag upon seeing his formula bottle and did not eat anything but formula till he was two as he had an aversion to food, which today, 11 years later we call him the bottomless pit as he eats everything. Cole met all his milestones but continued to be off the growth charts for both weight and height. Today he is in the 30% for height and 50% for weight.

Cole is extremely bright and outgoing, possible ADHD but not been diagnosed. Maintains almost straight A's in 5th grade and takes guitar lessons. In retrospect Cole has done much better than we thought he would and he surprises us with his strength and great attitude every single day. Cole's creatine was 1.2 at age 5 and today at age 11 it is 1.3. Unfortunately he's in 5th grade this year and continues to wear pull-ups. He leaks. The uro has suggested a mitrofinoff which we are reluctant to do at this time. Cole is being treated at CHOP in Philadelphia.

Michael

Parent's Name: Gigi Snyder
Child's Name: Michael
Child's Birthdate: 6/18/2001
Email: gbsnyder@aol.com
Location: Hamilton, NJ
Diagnosis: PUVs

Story: At 22 weeks of what was thought to be a normal pregnancy my baby was
diagnosed with PUV's. After 5 bladder taps we were told there was no
measurable kidney function. As we didn't know the status of his lungs we were
told our son probably would not come home. I was hospitalized at 33 weeks for
lack of amniotic fluid. At 35 weeks we induced labor and signed DNR papers on
the way to the delivery room. We had contacted a family friend who is a
funeral director the night before to make arrangements. The sweetest sound
was my baby's scream and the sight of a trickle of urine as they took him
into the resuscitation room. We met Michael William Snyder a half hour later
attached to more tubes than I'd ever seen and on a ventilator...but he
already survived delivery and made it farther than our perinatologist
anticipated. "Mighty Mike" as his first nephrologist dubbed him was proving
to all of us the fighter he is. His PUV's were repaired at 4 days old. I gave
Mike his first kidney at 23 months old. He rejected it after only 9 weeks. He
had his vesicostomy placed six months later. Mike had chronic rejection and
was listed for another kidney in 2005. We recieved the call on Labor Day
weekend 2007 that a kidney was available and he was transplanted on 9/2/07 at
age 6. The following May we converted his vesicostomy to an
appendicovesicostomy. Mike was then the closest he had ever been to a
"normal" life being able to do away with pull-ups. His urologist doubted he
would ever have normal bladder function but to all our surprise Mike started
to void between his every 3 hour cathing routine. He is now voiding every 3
hours and only wears a bag at nighttime to decompress his bladder overnight.
And this is the now 12 year old who doctors told us would not come home. Yes
it's been a long hard road with many unexpected complications along the way.
Mike was developmentally delayed by over a year, had fine and gross motor
skill delays for which he received PT for many years, was tube fed for the
first 18 months and is sfill a picky eater, has had 20+ surgeries/procedures
for renal/urologic issues, but we are grateful for each day he is here. Hebis
an All-Star baseball player, plays basketball, has medaled multiple times in
the Transplant Games, is a 7th grader now learning at grade level, and
teaching us all how to live life to the fullest. Our kids are the strongest
kids I know and they can teach us to appreciate life and conquer the
challenges that come our way.

Devonne

Parent's Name: Valerie Buskey
Child's Name: Devonne Buskey
Child's Date of Birth: 05/11/2003
Location: Rochester N.Y.
Diagnosis: Puv's, Chronic Renal Failure, Severe Bilateral Hydronephrosis, Grade 5 VUR, non-functioning bladder

Story:

My six year old son Devonne Buskey, was born May 12, 2003 after a diagnosis of urethral obstruction as made at twenty weeks. He was born with PUV's, and a high creatinine number that everyone believed would cause kidney failure before the age two. He went on to have Grade 5 Bilateral Vesicoureteral Reflux, Severe Hydronephrosis of both kidneys, and a non functioning bladder. To date, he has had over 12 surgeries and he currently is still dealing with Chronic kidney failure and all of the problems associated with it, Constant kidney infections that leave him hospitalized frequently for extended periods of time, and other non kidney related health problems.

He has a vesicostomy and a left sided nephrostomy due to drainage problems, and he has a foley catheter in place overnight, and is straight cathed during the day because of extremely high urine output ( polyuria ).

He will need a transplant going forward, and we are hoping to avoid dialysis and do a living donor (preferably myself or his father ).

He is followed by a Pediatric Urologist, Nephrologist, Gastroenterologist, Infectious Disease Specialists, Nutrionist, and soon a Genetecist. He is currently taking 16 different medications daily. He is the sweetest little boy, who loves life and all of the wonders that it has to offer. He is passionate about Spider-Man, Indiana jones, and of course Video Games. I live by the Motto that: " Life is not measured by how many breaths you take, but by the moments that take your breath away"

Evan

Parent's Name: Claire Klim
Child's Name: Evan Owen
Child's Date of Birth: 08/05/2006
E-mail address: cl.klim@virgin.net
Location: North Wales, UK

Diagnosis: Posterior Urethral Valves causing moderate kidney impairment and high blood pressure

Story:

Evan was born a big boy at 4.85kilos (a healthy bonnie boy or so I thought). At 4 weeks old he started to become sickly and was diagnosed with various viruses. At 7 weeks old he developed sepsis caused by a major UTI. After a scan they found his bladder and kidneys looked very poorly so we were rushed off to Alder Hey Children's Hospital, Liverpool, UK. A day after we arrived at Alder Hey, Evan went into kidney failure as his bladder muscle blocked his ureters (a response to the cathetar). He had nephrostomies into both kidneys until his bladder recovered. He had the valves ablated at 10 weeks old. Once they got on top of the sepsis and after the valves were ablated he improved loads. In hospital he had very high blood pressure which is still too high.

We spent 3 weeks in Alder Hey with him. As a baby he had issues with reflux and getting him to have his bottle was difficult. He's had so many viruses and infections and has had three febrile convulsions. At time of writing (February 2010) he's 3.5 years old and doing ok(ish). His creatinine is usually stable and within the normal range which is great. We're struggling with toilet training as he doesn't seem to be able to feel the urge to urinate and often has damp pants. Watch this space. Main difficulties are toilet training, dehydration causing headaches and vomiting, lots of viruses, high BP, goes through phases of leaking out of his nappy at night and is lways pale and sickly looking and doesn't have much energy. However, PUVs aside he's gorgeous, clever little thing, strong willed but caring and he loves his baby sister Martha.

John

Parent's Names: Cathy and Gary
Child's Name: John
Child's Date of Birth: 5/8/2007
Email: gary1craig@yahoo.com
Location: San Jose, California
Diagnosis: PUVs, grade V VUR, megaureters, dysfunctional bladder, dysplastic right kidney, stage 4 KD, GERD

Story:

I decided not to have the regular 16 week ultrasound as I was particularly stressed at the time. This was my 6th baby, my husband was out of work AND my father was dying. I didn't think I could handle the stress if there was a problem with the baby. So I hoped for the best and everything seemed to be okay. 3 days late, on May 8, 2007, I went into labor and was so excited to be off to the hospital to finally meet my little one, to hold him and nurse him. Labor was easy but my water did not break until I was pushing. When John was born he had a huge belly and was not breathing. The nurses acted fast placing him on the warming table, calling the doctor, stimulating him and bagging him. John was not responding and his heart rate started to go down. It was surreal. Finally after 4 1/2 minutes he took a breath and they rushed him off to the nursery where he was put under an oxygen cube. I cried and I prayed and called everyone on my contact list asking them to send up prayers for John. Hours later the transport team came and prepared him to be transported just 40 minutes away at Santa Clara Kaiser where they had a level 3 nursery. The team wheeled him in and he did not look good, kind of grayish. The doctor said he was in critical condition and that he might not make the bumpy ambulance ride.

At Santa Clara Kaiser, John was hooked up to an occillator and was on all kinds of medications. He had 3 nurses. They told me he had 2 hypoplastic lungs and kidney issues. Prognosis - he had 2-5 days to live. I stayed at the hospital for 2 days and then went home without my baby. The doc called us a couple of times telling us to come in NOW. They didn't think he was going to make it. At 8 days, the doctor said that he had elevated CO2 and that he had the occillator turned up very high to try to vent the CO2. He was in severe danger of getting a popped lung and they didn't think he could survive that. The doc told us he would most likely have a bad brain, bad lungs and bad kidneys and they couldn't really justify poking him and putting him through all of these procedures. When we arrived at the hospital the doctor suggested unhooking him from the breathing machine. My husband and I did not want to do that. We went to sleep for an hour as it was 5 AM and when I awoke, I exclaimed, "Honey send out prayer requests!" We did... and a few hours later we went back in to see John. His CO2 was down and his urine output had doubled. He made it through! The nurses called him a miracle baby because they all believed he was going to die.

From then on John improved little by little. A nephrostomy tube was in place to drain his kidney and after they performed the VCUG, he also had a catheter. There were several obstacles that John needed to overcome: severe edema, jaundice, yeast infection, UTI, a popped lung and GERD. I finally got to hold my baby after one month and jubilantly brought him home when he was 2 1/2 months old. However he had severe GERD so we ended up back in the hospital 3 days later and stayed another 18 days while the docs tried to figure out why he was throwing up. We left with an NG tube and he was fed continuously for 20 hours from a feeding pump. He threw up every couple of hours all night long for the first year. Wow talk about sleep deprived!

John still throws up at least once a day and is not that interested in food. I have come to realize he needs electrolyte replacement and a lot of water. He is fed through a g-tube, needs to be cathed daily and has a catheter at night. John has one non-functional kidney and the other is about 20% functioning. We are treating his constipation and this seems to help his bladder function better. Although he is small for his age, he does all the things a two year old does. He loves his 5 siblings and loves to make us laugh.

It has been very challenging but I have come to accept these challenges. God has provided for all of our needs and has given me strength to care for John's special needs. I have great hope that somehow in the big picture God is working all these things for good and for His glory. I look forward to the special plans that He has in store for this miracle baby.

Jordan

Parent's Name: Kelly Borders
Child's Name: Jordan
Child's Date of Birth: 10/20/1992
E-mail address: mkborders113@comcast.net
Location: Acworth, Ga
Diagnosis: PUV's


Story:

I worked as a RN in the newborn/ NICU nursery. Being that Jordan was my first baby , I was super excited. I ran back to L&D a whole lot to get ultrasounds to watch my baby grow. "Wow, Kelly, your baby always has to pee" rang in my ears every-time I had a look by sonogram to look at him. He always seem to have an enlarged bladder and why was that. Something, I believe it was God, told me to mention to the OB next time I went to see him for my normal check up. I had one sonogram at his office and everything had appeared to be okay. When I mentioned this to my OB, he said "we should do a sonogram and check it out". Nothing could have prepared me for the tailspin I would go through that day. This was the one appt that my husband did not come to. I was going to find out that my baby had hydronephrosis of the kidneys and I would need to go see a specialist. I could hardly see through my tears enough to make it home. There in the kitchen of our first starter home, I shared with my husband the devastating news, something was wrong with our baby and it would probably require surgery after he was born.The days after that I would do a lot of researching on my own. I got in to see the Perinatologist soon after the initial discovery. He would verify to me that it could be a twisted ureter, PUV's or something more serious. Nevertheless, he had a blockage and it was keeping him from having an adequate flow of urine in utero. Our friends, family, and church community held us close for the next 8 weeks. My nurse friends banded me from all of our medical books at the hospital(I was getting coming up with all kinds of diagnosis') and tried to stay upbeat for me.After 8 weeks, I was induced and a beautiful healthy- appearing 9 lb 8 oz. baby boy was born . I had him at the hospital where I worked and my fellow pediatricians kept close watch over him. I insisted in seeing a pediatric urologist before Jordan was born. I was glad I had. Everything was in line and ready to go once he was born. The next day, his creatinine level soared and it was time to go to the Children's hospital. We packed, left my hospital and headed for the unknown. The diagnostic tests showed PUV's. Now we had to assess the damage. After a nuclear DPTA renal scan, the scan showed only one kidney to be functioning. I took a deep breath, my baby had lost a kidney because of PUV's. After discovering that scar tissue that once was a kidney had grade 5 reflux , we learned it would have to be removed. 4 Months later, I took my beautiful baby back to Children's to have a nephrectomy. He bounced back quicker than I could imagine. 17 years later, here we are. He is a normal boy VERY active in sports and has a sweet girlfriend. He is very smart and takes AP classes. We are excited for what the future has to bring. Many years ago, I begged the urologist and everyone I knew in the medical community to please just let me talk to another mother who went through the same thing. I needed to know he was going to be alright and needed someone to talk to so bad. That never happened for me, but my hopes are to be here for some other mother who is experiencing the same thing I went though. There is light at the end of the tunnel and I give God the Glory.

Luke

LukeParents Names: Matt & Jade
Child's Name: Luke
Child's Date of Birth: 9/20/2006
Email: burton.jade@mchsi.com
Location: San Tan Valley, Arizona

Diagnosis: PUV's with end-stage renal disease and kidney transplant

Story:

I was induced at 38 weeks for preeclampsia. Luke was born on Sept. 21st 2006
weighing in at 7lbs. 2oz. He was not breathing right so they took him to the
NICU where they found he had a pneumothorax which is air between the chest
wall and lungs. He was placed under an oxygen hood for 24hrs. and it went
away on it's own. However, Luke was a poor eater because nothing could keep
him awake. I got him to start eating a little and the hospital sent him home.
He was still having trouble eating and started to loose weight. His newborn
screen came back abnormal a week and a half after he was born. The doctor
sent us for more blood tests and those came back abnormal again. So, the
doctor sent us straight to the hospital. Luke's potassium was so high, he was
in danger of having a heart attack. They did some tests including an
ultrasound and noticed his kidneys and bladder were enlarged. The next day he
had a VCUG where he was diagnosised with a PUV. He went into have it removed
the next day. Luke also got a G-tube around the same time because he was
failure to thrive. He remained in the hospital were the doctors monitored
his kidney function. Although his kidney function got better after the valve
was removed, his kidney function never got to a normal range. He started
peritoneal dialysis at six weeks old. He then received a mitrofanoff to get
him ready for transplant in November of 2007. He was placed on the transplant
list on Feb 14th 2008 and received his transplant on April 19th 2008. After
transplant, Luke's bladder function improved so his urologist agreed to take
down the mitrofanoff which he had never done before!! We are still having
potty training issues but he is able to pee without damaging the transplant.
Luke went into antibody mediated rejection in May of 2009. He has been
through several rounds of IVIG and plasmapheresis. The doctors have not been
able to get rid of the antibodies but, he is stable and we are just watching
his kidney function very closely. He has had 35 surgeries so far and is such
a blessing to everyone who knows him!!! He is a spunky 3 year old who is ALL
boy!! He loves cars and superheros. To me, he's my superhero and inspiration
to keep going!

Michael


Parent's Name: Gigi Snyder
Child's Name: Michael
Child's Birthdate: 6/18/2001
Email: gbsnyder@aol.com
Location: Hamilton, NJ
Diagnosis: PUVs


Story: At 22 weeks of what was thought to be a normal pregnancy my baby was
diagnosed with PUV's. After 5 bladder taps we were told there was no
measurable kidney function. As we didn't know the status of his lungs we were
told our son probably would not come home. I was hospitalized at 33 weeks for
lack of amniotic fluid. At 35 weeks we induced labor and signed DNR papers on
the way to the delivery room. We had contacted a family friend who is a
funeral director the night before to make arrangements. The sweetest sound
was my baby's scream and the sight of a trickle of urine as they took him
into the resuscitation room. We met Michael William Snyder a half hour later
attached to more tubes than I'd ever seen and on a ventilator...but he
already survived delivery and made it farther than our perinatologist
anticipated. "Mighty Mike" as his first nephrologist dubbed him was proving
to all of us the fighter he is. His PUV's were repaired at 4 days old. I gave
Mike his first kidney at 23 months old. He rejected it after only 9 weeks. He
had his vesicostomy placed six months later. Mike had chronic rejection and
was listed for another kidney in 2005. We recieved the call on Labor Day
weekend 2007 that a kidney was available and he was transplanted on 9/2/07 at
age 6. The following May we converted his vesicostomy to an
appendicovesicostomy. Mike was then the closest he had ever been to a
"normal" life being able to do away with pull-ups. His urologist doubted he
would ever have normal bladder function but to all our surprise Mike started
to void between his every 3 hour cathing routine. He is now voiding every 3
hours and only wears a bag at nighttime to decompress his bladder overnight.
And this is the now 12 year old who doctors told us would not come home. Yes
it's been a long hard road with many unexpected complications along the way.
Mike was developmentally delayed by over a year, had fine and gross motor
skill delays for which he received PT for many years, was tube fed for the
first 18 months and is sfill a picky eater, has had 20+ surgeries/procedures
for renal/urologic issues, but we are grateful for each day he is here. Hebis
an All-Star baseball player, plays basketball, has medaled multiple times in
the Transplant Games, is a 7th grader now learning at grade level, and
teaching us all how to live life to the fullest. Our kids are the strongest
kids I know and they can teach us to appreciate life and conquer the
challenges that come our way.

Rory

Parent's Name: Sammie and Michael
Child's Name: Rory Adam Jay
Child's Date of birth: 4/1/2013
Email: tizzy1990@hotmail.co.uk
Location: Manchester UK

Diagnosis: PUVs

Story
At our 20 week scan they noticed babys bladder didnt empty and they
could only find one kidney. Amniotic fluid at this point was normal. We were
referred to manchesters childrens hospital, who told us it was possibly
posterior urethral valves. At 25 weeks we returned for a second specialist
scan where puv was confirmed. At this point there was no fluid whatsoever and
baby was extremely squashed. We were given two options of termination or let
baby be born and spend a few hours with him before he would die naturally as
his lungs would not be be developed enough for him to survive. We went with
option two. At 32 weeks Rory Adam Jay Conway was born by emergency csection
kicking and screaming. It was 20 minutes before doctors had to intubate him.
He spent 6 days on the highest ventilation possible, where he gradually got
stronger and stronger. They tried to unblock his urethrals but were unable
to. So they placed a super pubic cathetor going straight into his bladder.
Blood tests showed that his creatinine was extremely high but as he was
producing a decent amountbof urine they decided to wait and see and daily his
kidney function increased. Rory was discharged at 9 weeks old on home oxygen
as his small under developed lungs just need a bit of help. We have have
since found out that his left kidney has no function at all. Leaving the
right to do all the work. At the moment the righr kidney is coping fine
however as it is damaged itself we aren't sure how long it will cope. He will
eventually need dialysis and a transplant but we are hoping this won't be
till rory is bigger. From day go this has been the hardest time of our lives
but I wudnt change rory for the world. He is now 7 months old doing great
with his development and has well and truly earnt the attitude he has. He has
taught us that even when the professionals dont believe its possible to never
give up. The future is unknown and very scary but im so proud of how far he
has come and have been since the minute I heard that first cry.