Polycystic Kidney Disease

[marie2020]

My 1 year old has just been diagnosed with PKD, passed from his father who also has it.

We wanted to have more than 1 kid but now we worry that they may get it as well as it is inherited disease.

Would you have more kids if you are at my place?

My 1 year old may live many years with this disease but it will develop as he grows. There is no cure for it.

They say PKD can be passed 50% chance BUT from my partners side it has been passed 100% with each generation, all his relatives from one side have PKD with no exclusions. Therefore I worry that if we have more kids they will have PKD too 😞

No, I wouldn't. I'm sorry, I know how hard it is. I have a genetic disease called Hereditary Multiple Exotoses. I was told when pg that my ds had a 50/50 chance of having it too, and sadly, he does. I knew I couldn't risk it again. Its really crap. Be kind to your dh, its such an empty feeling, watching your dc struggle with a disease they have because of you. Even though if course it wasn't intentional! Good luck to you all.

Very unusual for a one year old to be diagnosed. Presume through genetic screening. Is your husband on dialysis or transplanted? Has he been on tolvaptan? It is possible to have inherited two polycystin genes but it’s unlikely.

You need to go back to your renal genetics dept for clarification.

Ask for genetic counselling, you can access this through the NHS.

My son died from PKD but it was the infantile version (ARPKD) where me and my husband are just carriers, we do not have the illness. We took the decision to have another child but we had pre natal testing with the intention of ending the pregnancy if the child had the condition. Definitely not a decision we took lightly and the genetic counselling really helped.

Thank you for replying, very much appreciated!

My husband has cysts and they only increase in number with time, but he only found out he has then when he was 20. He goes to regular check ups and his kidneys seem to be functioning well.

We took baby to ultrasound as we wanted to have peace of mind that he hasn't got them, but unfortunately they found 3 in on kidney. It's good that kidneys are not enlarged. We are waiting for appointment with GOSH in London.

Thank you for suggesting genetic counselling, this is definitely something that we will do if we plan for another baby. I trust they will keep regular scans.
The scan that I had with my boy was at 20 weeks and they didn't say seeing cysts... so not sure whether he had them or they occurred recently, he is now 15 months.

I know the team at GoSh . They will be able to answer all your questions and advise on the genetics