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5/16 New Information

May 16, 2018 | 29 weeks

I joined a Facebook group (ARPKD Angels) for parents who have had babies die from polycystic kidney disease, and it's been kind of a game changer. I'm finally in touch with other moms who have gone through the same thing. I asked them to share their stories with me, to give me an idea of what to possibly expect, and a lot of them made it all the way to full term & delivered live babies that survived anywhere from a few hours to a few days.

A couple of moms even said their babies had kidney transplants & are still alive now and told me about another Facebook group (ARPKD) devoted to survivors of the disease. On that site, there are many stories of babies born with the disease, having their kidneys removed within the first 6 weeks of life, being put on medication and dialysis for 2 years or so, and then receiving a kidney transplant.

From the way my perinatologist had originally given us the diagnosis, it seemed like death was imminent and there was nothing we could do but wait, so this whole time I've been preparing for a stillbirth, but this new information has me totally rethinking everything. Now I want to go and get a 2nd opinion.

I am eager to go to my prenatal appointment tomorrow and discuss all these things with my doctor. We had decided upon a minimally invasive plan for prenatal care, because of that original diagnosis, but now I'm wondering if there's something I could and should be doing for baby.

This also has me feeling guilty that I haven't tried to do anything for baby these past 9 weeks. Should I try steroid shots for lung development? Would that even make a difference?

I definitely don't want to do the wrong thing, but what is the right thing to do? And how do I know that I'm doing "enough" of the right thing?


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