Gastroschisis

When I was about 18 weeks pregnant, I got a call from the genetic counselor working with my OBGYN. They said that based on my blood test, there was an indication that my daughter could have one of two conditions: spina bifida or something called gastroschisis. We scheduled an ultrasound for the next day and were informed afterward it was gastroschisis, which the doctors said was a significantly better diagnosis than spina bifida given the former is more treatable.

Gastroschisis is a birth defect where due to the malformation of the abdominal wall, the baby’s intestines are forced out of a hole that forms to the right of the umbilical cord. It doesn’t cause them any pain in utero, but requires immediate medical attention after birth. It is a common enough defect to where most hospitals have a procedure in place for it, and the survival rate is around 95%. Most people born with it go on to lead normal lives with little to no complications, save maybe needing to have a more limited diet. We’ve also been in touch with a charity/support group called Avery’s Angels and they’ve been a huge help. The hospital I will be giving birth at has one of the best NICU wards in the US and so she will be getting some of the best treatment possible.

She will have to be in the NICU for an undetermined amount of time. Despite all the positive information surrounding the condition, my husband and I sometimes falter in our optimism. This is our first child, and we are mourning the loss of starting parenthood off normally. We will not get to hold her for a while. And we won’t know when she’ll be able to come home until the time comes. Once she does come home, she will require more attention and medical care than most, which means my maternity leave will be longer than most. That adds a layer of financial pressure to the situation, which has pushed me more than ever to make a living off of writing. It’s the only way I can see being able to bring in any sort of extra income while also being around 24/7 for my daughter. Becoming a parent for the first time is scary, but this has added a very heavy layer to the situation.

We are doing our best to enjoy the pregnancy and treat it as normal. The ultrasounds are hard as you can very clearly see her intestines floating above her body. Despite all this, she is an active baby and is growing normally. We saw her movements externally for the first time just a few nights ago. Nothing major, just a little shift in my belly.

I’m 23 weeks as of right now. Her due date is in May, and that is a long time to wait for something you know is going to traumatize you. I’ve been trying to write something on the situation, and intend to eventually send it in to a parenting magazine of some sort, but I’m having trouble finding the words. Sometimes I feel like I won’t be able to fully get my story out until I’m a little further along in the journey.

We decided long before the diagnosis that we were going to name our daughter Silver. The other day at work, an older man came through my line wearing an interesting ring. I asked him about it, and he said he used to be a jewelry maker and it was one of his first pieces. He continued, noting that he made it out of silver because he couldn’t afford gold at the time but felt that it worked out in the long run given that silver is strong and incredibly durable. It seemed like a good omen. My husband agreed.