Survival with bilateral multicystic kidney disease

[mommylove31550]

I gave birth to a little boy on Nov 21, 2008. Unfortunately Austin lived for a very short time. I was told at my 20 week u/s that Austin had polycystic kidney disease affecting both kidneys. I was told he would probably not survive after birth. I carried full term and had no problems. Two weeks before I have birth my amniotic fluid index (AFI) was only 2. Austin basically had no lung tissue because there was hardly no fluid for his lungs to develop. He never cried. I was told I would probably never have to face this again. WRONG! About 6 months later I discovered I was pregnant again. I assumed all would go well. At my 16 week ultrasound my normal OB saw cyst on the babies kidneys. I was sent to a perinatologist at 18 weeks and he said it looked like multicystic kidney disease this time and not polycystic kidneys.  It is bilateral unfortnately. At that point my AFI was 9. He said he was 95% sure the baby will not survive after birth. He made me another appointment and said when I go back he will be able to say he is 100% sure. I went back at 21 weeks and the cyst were still there. The surprising thing was the fluid had dropped but was still in the normal range (low normal at 6). The specialist expected there to be no fluid since at about 18 weeks the kidneys are the only thing producing amniotic fluid. He said this means there is some kidney function since there is fluid still there. He also said he didn't look for the fluid to gradually decrease but to stay around the same 5-7. He said there is a good chance that the lungs will develop. He said he no longer feels comfortable saying he is 100% sure the baby won't survive. It was kind've a glimmer of hope but not enough to make me go decorate a nursery and have no baby to bring home to it. Just to know that my baby will be able to cry was exciting to me. My concern is, if my baby is able to breathe and cry, what is there to do with the kidneys? Is it just going to be waiting for kidney failure while my baby suffers as it slowly dies? Can dialysis be done? If the kidneys are functioning somewhat in utero will they continue to function after I give birth? I have read that most doctors will not perform a transplant until 1 yr of age. I want more than anything for my baby to survive, but I don't want it to suffer. I am now 22 weeks. I still have a while to go. My due date is 01-16-2010. I know it is ultimately iin God's hand and it must be his will. I realize that wherever I am is where God means for me to be. I know he will take care of me because he always has! I guess I just have so many questions. Ultimately I guess my question is, can an infant survive if it has bilateral multicystic kidney disease? Thanks Alot! If anyone has any info , you can email me at ***@****

[chanthia]

I had the same experiences too.my first and second baby..so now have succeeded having any healthy baby?because I am still waiting for my third baby and really scare it will happened again..

[Samandeva]

Hi, I’m interested to know how your baby got on. I’m currently 28 weeks pregnant and my baby also has bilateral multicystic kidneys. I’m petrified of what’s to come. They have told me they are cautiously optimistic over his lung devastated as I do still have some fluid. Xxx