perinatal pkd

Do you have a young child or teenager with ARPKD or ADPKD? Talk to other parents who are caring for children with PKD.
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perinatal pkd

Postby Guest » Sun Apr 06, 2014 6:43 pm

Almost 10 years ago we werentold our daughter had pkd & she passed. We recently received the autopsy results which said she had multicystic displastic kidneys. When my husband & I found out we didnt need to worry about pkd we were extremely relieved. This was when I was about 10 weeks along with my current pregnancy, everything looked bright & sunny in our new babies future. As I am high risk I had another ultrasound at 14 weels & the kidneys were enlarged. I am currently 23 weeks along & the Dr's have flip flopped their diagnosis a couple times. Has anyone else had this experience? Im so confused.


Re: perinatal pkd

Postby Michele » Sun May 11, 2014 9:28 am

I do know there are similarities between the two diagnosis. Have you spoken to a nephrologist? Where do you live? I have two boys with ARPKD and I live in Ny.

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Joined: Mon May 12, 2014 8:30 pm

Re: perinatal pkd

Postby Parent123 » Mon May 12, 2014 9:46 pm

Hi. I posted on another forum. I just had twins a boy and a girl 3 wks ago. Turns out the boy has it. He's been in the hospital this whole time. They are saying he might not need dialysis yet...but his kidneys are around 9cm each and he is only about 20inches long....
When I was pregnant they saw that the kidneys were larger at 16wks but they couldn't tell what was wrong because the cysts didn't show up on my sonograms...I ended up in the hospital from week 31 to 34 (when I delivered) because he had practically no fluid and I had to be monitored the whole time. Now you can see the cysts on his sonogram...and we just hope they don't grow fast. His kidneys do have some function now, he has urine output and all of his blood tests are good now.
Any advice??? Anyone with a similar story?


Re: perinatal pkd

Postby Guest » Sun May 18, 2014 12:18 pm

I'm the original poster for this question. I'm at a lose for what could happen. I'm 29 weeks now & the fluid is not measure able. We found out we are having a little boy. I know all the possibilities, but I'm trying hard not to loose faith. My little man is extremely active!!! His movements hurt me regularly because of his strength & recently are making me kind of queasy. We have also learned that his ventricles are enlarged, but the drs are unsure whats going on with that because they have not seen these symptoms together. I'm just lost!!!

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Joined: Tue May 20, 2014 10:20 am

Re: perinatal pkd

Postby JuliaRoberts1 » Tue May 20, 2014 10:25 am

I'm sorry you are dealing with PKD in your pregnancy. It is true, the diagnosis is very severe when there is no fluid but it is not unheard of for a baby to survive with very agressive healthcare in the NICU. There are some women who have had amnioinfusions (saline put in sac) and they believe that has helped. Not many doctors will do it, but some might for a fatal diagnosis.

Have you talked with a high risk ob? Have you talked with a NICU team at the hospital for a birth plan for intervention at birth?

Michele karl

Re: perinatal pkd

Postby Michele karl » Fri Aug 08, 2014 2:49 pm

Hi. In response to the mom who is pregnant.... Where do you live? Like Julia said its a good idea to talk to the specialists and get an idea of what can be done after he is born.

To the parent with twins....congrats on the babies. I have two boys with ARPKD who are 8 and 14. With my 8 year old he was in the NICU for 3 weeks after birth because of underdeveloped lungs. His kidneys were slightly enlarged at birth and now at 8 are 14 cm. He does have decent kidney function. My oldest was not diagnosed until he was 6 after my 8 year old was born. He currently has 100% function? ARPKD is so different in every child, even siblings!


Re: perinatal pkd

Postby Chrissie » Thu Dec 25, 2014 7:03 am

While my situation isn't exact, I'm hoping my experience will offer some support/encouragement to you! While pregnant with my third child, we were told at her 17 week u/s that her kidneys were echogenic, and one specialist thought he saw cysts. After additional testing to rule out other possible complications, I was monitored for the remainder of my pregnancy, as a high risk. There was no family history of PKD, or other kidney related issues in our family, so her continued brightened kidneys remained uncertain. We saw specialists at childrens hospital and our local hospital, and were told best case scenario, it could be nothing, worst case scenario, it could be immediately severe and upon birth she could need dialysis and a transplant by the age of 1.

At 33 weeks my blood pressure was high and my daughter wasn't growing at a normal pace. I was placed on hospital bed rest and they were hoping to induce me at 37 weeks. During my hospital stay my daughter's growth remained slow and my fluid levels dropped so they induced me at 35 weeks. She was born weighing 4 lbs, but overall healthy and remained in the NICU for 9 days. All testing during her hospital stay indicated her kidneys were functioning normal, so we were optimistic that maybe the best case scenario was true. As a follow up to the testing in the NICU, after her release from the hospital we had an appt at childrens hospital with a nephrologist. Her ultrasound showed cysts in both kidneys, but normal function and normal kidney size. She has annual ultrasounds and nephrology appt.'s and so far her health and kidney health remains normal, despite the cysts.

When my daughter turned two, I had a routine physical and my doctor noticed I had high blood pressure again (it had gone down within 3 months of delivering my daughter). Based on her cystic kidneys and the reading I had been doing on cystic kidney diseases, specifically PKD, I asked to be screened. I had an ultrasound and was diagnosed with PKD. My diagnosis felt like we found the missing puzzle piece and confirmed that our daughter has ADPKD.

I have been so thankful for the PKD foundation. Being the first in my family to be diagnosed with PKD, and having a child with PKD (and the possibility that my other two may also have it....just not diagnosed) has been scary. The support from other PKD patients and parents has been encouraging.

I hope for the best case scenario for you! No matter the outcome, know you have a support system here!

Last bumped by Anonymous on Thu Dec 25, 2014 7:03 am.

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