Prematurity Awareness and Choices

November 16, 2012

Since my daughter Daphne was born three and a half years ago, I have read hundreds of stories of babies who were born too soon. They are all different, all heartbreaking and many of them share one thing: surprise. A normal pregnancy, nowhere near term, interrupted, lives changed.

That is not my prematurity story. As I’ve written here before, I was expecting monoamniotic twins. The standard protocol is delivery at 32 weeks, when babies are technically safer in the NICU than in the womb. I knew, from the very first prenatal visit, that my girls were going to be preemies, even in best-case scenario.

My MFM told me I had a decision to make. After meeting with the NICU chief, and learning about the hospital’s success rates at different gestational ages, I should decide when I’d like to be admitted. If I chose inpatient monitoring at 24 weeks, then he would be ready to deliver at the first sign of trouble, and the NICU would be ready to treat the babies. If I chose to wait longer, that would be fine too. My decision.

This may seem like an easy decision. Admit at viability – which means a different gestational age at different NICUs – and not a moment later. In my case, I had a three-year-old at home and was petrified to check out of her daily life for months. The twins were wiggly little shapes on the ultrasound screen, two beating hearts that I loved. Lucy was an active, curious, curly-headed toddler who needed me. I had to consider the wellbeing of my three daughters.

Sisters bonding in the NICU

I met with the Chief Neonatologist when I was between 20 and 21 weeks along. I was alone, as my husband was knocked out by a stomach virus brought home by Lucy. The good doctor was calm, welcoming, and answered all my questions. He gave me some encouraging information: “girls usually do better than boys in the NICU, so you’re in luck already.” I furiously scribbled down on my little black notebook the possible complications at different gestational ages, starting at 24 weeks all the way up to our goal of 32 weeks. I learned about the NICU’s visitation policy, pumping rooms, kangaroo care. Then I got a tour of the unit and found it bustling with mothers and babies, nurses, doctors, and so many alarms.

I headed to work after the visit, no closer to a decision. The pregnancy was going well. I had no symptoms of pre-term labor, and the babies were growing nicely. Yet, every day I crossed off the calendar in that second trimester, I grew more anxious. At first, I thought of pushing admission to 28 weeks, but ultimately we decided that 26 weeks was a good balance. In the grand scheme of things, those two weeks wouldn’t make much of a difference to Lucy, but would make all the difference to the twins, in case they needed help.

This, I know: if I had waited to 28 weeks, there would be no babies. At 27 weeks, 4 days, we lost Leah, our baby B, and our prematurity journey began. Instead of two hefty 32-weekers, we had a two-pound survivor, struggling for every breath.  Instead of a month in the NICU, we got five.  My prior knowledge of prematurity and the possible complications may have helped steer my decision, but seeing Daphne for the first time still took my breath away.