Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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my unborn baby with pkd

hello im 25 and  we just recently found out my baby has PKD during my 23 weeks ultrasound with no amniotic fluid.


Baby's heartbeat and movements are good. Me and my husband's sides doesnt have any history of PKD.


Does anyone have the same experience? I am hoping and praying for any chances of survival.



Any advice? or treatment to help my baby survive? Hoping someone could respond.


Badly needing support.



Regards,


Pearl


from Philippines

Replies

Chewitt
Chewitt

Hi Pearl,
This must be an extremely worrying time for you. I don't recall anyone posting here with a similar situation before, though there has recently been a post from a mother with a child who has PKD. There are so many variables involved that it's impossible to tell you what will happen but I know that babies do survive with PKD, including ARPKD, so keep hoping and we will hope with you.
tenaciousd
tenaciousd

Hi. I was around 23 weeks pregnant when my baby was found to have abnormalities with its kidneys. After many scans and much worrying and after having a scan myself I was found to have pkd. I went two weeks overdue and had a 9lb 12oz baby boy. He was absolutely fine and is niw 27. Apart from having high blood pressure at 17 and given medication to control it he is fine. I send my sincere best wishes as I understand what you are going through and hope this has helped a little bit.
panda14358
panda14358

hi chewitt and tenaciousd,

thank you! i am now 28 weeks and baby's movements are good. thank you so much! I do hope and pray everything will be fine. im drinking lots of water due to baby's pkd, i am anhydramnios.

@tenaciousd - was your baby with pkd too? or is it just you? i am glad to hear your child's fine.

blessings to you both!
panda14358
panda14358

hello (update)

i gave birth to my baby on june 29 premature 33 weeks. he was at nicu for 2 days and gave up.
everyday is so hard since then. it breaks my heart everyday. my baby wasnt confirmed with pkd as it was only a very short period to get the tests done. we were about to have him for 2d echo on that day because the pedia was suspicious he has heart enlargement. unfortunately, he didnt make it. he just waited for his grand mother to come and see him. :'( im still thankful i was able to see him. Still praying i would get pregnant by next year with a healthy baby though i also have SLE.

blessings to all.
Chewitt
Chewitt

Panda14358,
I'm so very sorry for your terrible loss. It must be incredibly difficult to go through this. I hope your friends and family can support you and help you to come to terms with what has happened. My thoughts are with you and I wish you well for the weeks and months ahead.
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