Multi-cystic Dyplastic Kidneys

This is not something I ever though I would have to write about. We have had a baby that did not live very long. I have avoided writing about it in most any way I can except for a few facebook posts that give precise summaries but few details.

Because it hurts. And will hurt again and again. Is knowing ahead of time better than having stillbirth or sudden death thrust upon you? I don't know. I hope never to have to compare the two. Because this is hard enough.

This pregnancy started out weird, finally settled into a typical, for me, pregnancy, and then I went in for our 20 week ultrasound. I went in alone, no big deal. We'd bring home the ultrasound pics and get on with things. Until the tech said, "There is no fluid." and "It looks like the kidneys have cysts. I need to talk to the doctor." So I got to lay there and wonder just how bad that was. Doctor S. came in and said "It doesn't look good. Babies don't survive with kidneys looking like that and without amniotic fluid. Let's get you an appointment with a specialist to make sure." She also said she was surprised the baby was even alive.

The specialist laid it out for us. No kidney function means no amniotic fluid production. No amniotic fluid means no lung development. No lung development means no chance of survival beyond a short period of time outside the womb no matter what interventions are given. It also raises the risk of antepartum death (stillbirth).

With everything laid out before us, we were given our options. Straight up abortion. Early delivery. Term delivery. Abortion was out from the beginning. That is us. We would never consider it. With my history of c-sections that left early delivery and term delivery. With early delivery we had two options, inducement by drug to try to have the baby vaginally or wait until the best earliest safe c-section delivery date (unless I wanted a transverse cut - straight up the middle).

Trying to have the baby vaginally appealed to us. Especially since I had never been able to experience it. We attempted it at 22 weeks. So we had the added burden of attempting something at a time that made it look like an abortion. The biggest difference was we wanted our baby to come out alive and have the chance to be with it for as long as it might live. Chances of survival were pretty much even no matter when we delivered so timing didn't seem like a big deal. Plus, we kind of wanted it to be over with. Get it done. Do a funeral. Move on.

Biggest problem is, I don't respond to any labor inducing drugs. Period. We tried to induce my first delivery because of blood pressure and other issues and I never went anywhere. Hence the beginnings of the c-sections. Multiple rounds of a drug that 9/10 of women respond to in the first 24 to 32 hours did nothing after way more than that. So we had to go home in defeat. That hurt. Again. I was ready to face it then. Or I thought I was. I'll never know now.

So we had to wait. We decided for early delivery still. Going to term seemed just a little too difficult especially with the physical pain that the pregnancy was causing. No amniotic fluid affects more than just the baby. It affects the mom too. No cushioning meant I felt the baby move as if it was around 7-8 months at 20-22 weeks. It meant more muscle pulling and ligament stretching. For me, it also meant I couldn't go for walks or anything like that because I would be doubled over in pain from the tugging and pulling. I couldn't do much more than fix meals, load the dishwasher and do a couple loads of laundry at the most before I had to sit for the rest of the day. And it got worse.

So, here it is December. We did it. We delivered a beautiful baby boy we named Hayden. He stayed with us for 5 1/4 hours before passing away. He was full of surprises. First off, he was a boy. We hadn't known. Without the amniotic fluid, none of the ultrasounds could see his sex. Second, he came out crying. Just two little short squawks but it startled everybody especially the doctors. Third, he was six pounds. They were expecting 4-5 because of when we were delivering. Fourth, Hayden started trying to breathe once he was on oxygen, just a little tube we held near his face to see if it would help him last just a little longer. Long enough to meet his brother and sisters anyway. His heart rate stayed up for a good 4 hours.

When the nurse showed him to us in the operating room, I cried a bit. I didn't know if he was going to live long enough for me to hold him. But I was glad he was here. During the whole time he was with us, I didn't really feel sad. I was pretty much at peace. I did have a hard time when I realized that Hayden was having more difficulties breathing. That his lungs were beginning to deteriorate. But as he stopped breathing, we just held him and held him.

We have had (and still have) some excellent support from the hospital, family, friends, and a group associated with the hospitals called Angel Watch. Heather and Marilyn from Angel Watch were there throughout. Heather took wonderful pictures and created other mementos to help us remember Hayden by.

As time goes on, I'm finding more and more things that I'm missing out on. I realized I'm sleeping quite well. Because I'm not getting up for middle of the night feedings and diaper changes. I realized as I was cuddling my 19 month old that I would really like to be cuddling my 5 day old. I'll probably find more things that I'll be missing out on. I'll be sad at times. I'll be overwhelmed by it at times.

At the same time, I haven't felt as bad as I have assumed I would. I do know he is a permanent part of our family. He will always be my son. Our son, brother, grandson, etc. My faith in Jesus Christ and His Atonement for us is carrying me through. We'll see how things go as time goes on.