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.