Polycystic Kidney Disease /PKD

Hi,
Exactly month ago I have birth to a little boy who unfortunately passed away only 8 days after.

It is impossible to express how this made me feel…I wish nobody would have to go trough something like this ever again, yet I know that I am not the first, and unfortunately and certainly not the last.

First diagnosis was trouble breathing because the lungs are poorly developed, so doctors put him on breathing machine. After couple of days they discovered that my baby has Polycystic Kidney disease and that this caused poorly developed lungs.
At this point everything went wrong. He was worse and worse everyday and finally he stopped urinating and his lungs could not endure this…he died on October 31.

In past few weeks I have learned that PKD is hereditary disease but in some cases, PKD is not inherited, but occurs as a spontaneous gene mutation. Since my husband and I do not have this disease (at least we do not know about it), I think that my baby got gene mutation right after the conception.

Does anyone of you have any information on PKD? How to prevent it? How to discover it in early pregnancy?

I appreciate any information since I do have plan to have another baby, but am scared if the same happen again…
Thank you…

Amles
There is no way to prevent PKD. Below is some info that may be useful to you. If you need any more help or info just ask.

PKD can be diagnosed in unborn babies using a test called amniocentesis (analysis of the amniotic fluid that surrounds the baby) or a test called chorionic villus sampling (examination of a small piece of the placenta). However ttese procedures have a chance of causing spontaneous abortion (about 1-2%)
The most common symptom of PKD is high blood pressure. Other symptoms are:
Pain in the back and side
Blood in the urine
Frequent kidney infections
Not all people will have all of these symptoms.
Usually, at least one parent must have the disease for a child to inherit it. In 25 percent of cases, there may be no family history of PKD. These cases are new mutations in a family. In very few cases, autosomal dominant PKD occurs spontaneously after conception. Parents who do not have PKD would not be at an increased risk to have additional children with PKD. But individuals with PKD have a 50/50 chance of passing the gene on to their children.
Hope this helps


Alan (Midwife)

Amles I can not give you any information but i did want to say to you that my heart goes out to you- I am sorry for your loss

Sorry I cannot provide further information, but I'm so sorry your prcious baby passed away.

Awww Amles, I am so sorry to hear that your little one passed away :hugs:

Amles, I am so sorry for your loss....big hugs to you and your husband.

Thank you all...support means so much to my husband and me now.
Alan, special thanks to you for info on PKD...it is good to know that parents who do not have PKD would not be at an increased risk to have additional children with PKD...but still, I will do amniocentesis next time. I was so in worry that PKD could not be discovered in early pregnancy.