Tuesday, May 31, 2016

Going down this road again

It's been quite a while I've written. I would like to make this a more regular thing, since writing is so cathartic for me. It's been almost 2 years since we lost Molly. I can't believe it's been so long, and even more so, I can't believe we are here yet again.

That's right. This is pregnancy number 7 for us, and will be loss number 5. For those of you following along at home, we've got a healthy daughter, a healthy-but-severely-delayed daughter due to partial trisomy 13, two first trimester miscarriages, and second trimester miscarriage, a son who died when he was 3 hours old, and now are pregnanct again with a child who is not destined to grow up in this world.

We found out in January that I was pregnant. I was immediately struck by the differences between how I react to a pregnancy, and how most other married mothers would react to a pregnancy. The normal response would be things like, maybe Emily will be ready to move to the big girl car seat so this baby can use the convertible seat. Will I need a new stroller? How should we shuffle kids and rooms to make room for a new baby? Do you think Matthew will be jealous of the attention the new baby will receive? For us, it almost stops at "I am pregnant". There is no planning. Sure, we dream. We wonder. We talk names a little bit (no matter what happens the baby gets a name). We think about what could be, but we think of what could be in both positive and negative terms. Will this child need lifelong care? Will I lose the baby next week or next month? Will we lose another baby at birth?

My pregnancies are always a guessing game, at least until that first ultrasound. This time we saw the baby at about 13 weeks, in early April. It was pretty evident right away things were not good. It's been a long time (8 years!) since I saw a normal ultrasound. We knew we weren't seeing anencephaly. But the head still didn't look normal. As usual, those ultrasound techs must practice their faces of steel. She gave nothing away. But the perinatalogist came in, and the look of pity made it evident. We were looking at probable full trisomy 13, she said, a less likely but still possible outcome of our balanced translation. There are brain, kidney, and heart abnormalities, possibly quite severe and life limiting.  We already knew a lot about trisomy 13. Natalie has partial trisomy 13, in where she has about 30% more genetic material on one 13th chromosome (chromosomes come in pairs) than she is supposed to. It's suspected that this baby has a full third copy of the 13th chromosome. As far as trisomies go, 13, 18, and 21 (Down Syndrome) are the most common. We know that 90% of babies do not make it to their first birthday. We also know that virtually none of those 10% survivors have the severe brain abnormality that this baby does. We found out last week that the kidneys are so poorly functioning that there is almost no amniotic fluid, so the baby's lungs are not able to to properly develop.

My reaction this time around has been much different than with Peter's diagnosis. I still look back on that day as one of the worst days of my life. The shock of hearing that your child is going to likely be born alive but then die in your arms is something no parent can ever really prepare for or fully understand until they've been there. The grief, the mourning of a life that is still inside you, preparing for death when you literally feel their kicks. It's not a feeling easily put into words. But this time was different. This time, I know what to expect. I know that there is joy mixed with the grief. I know that we will overcome that grief. I know my husband and I are strong people, that God has blessed our marriage and granted us the gift of strength. I know I have so many people praying for us. I know there is a light at the end of the tunnel. And I know that, God willing, when I get to heaven, I will have 5 precious souls there to greet me and call me momma.


  1. My heart remains with you. I am so thankful for those souls who will greet you in heaven; and even more thankful that you live in hope and joy for that day.