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When I was almost 23 weeks pregnant, we got the news that our baby would be born with Down syndrome. It was our first child.
Many appointments and many more difficult challenges followed in the next few weeks – intrauterine growth restriction, a single umbilical artery, ventricular septal defect, preterm labor, bedrest. Then, at 30 weeks, my regular biweekly checkup turned into a nightmare.
On that day, a nonstress test showed that my baby was indeed in distress, and my body was actually going into labor. I was rushed to the hospital, where they administered meds to control my contractions and hooked me up to monitors to watch my baby.
I waited and waited, trying to relax. Then my specialist walked in. I was shocked by the look on her face. She pulled up a chair and told me the baby might need to be born that night, or the next day at the latest, if things didn't look better.
And then came the talk: the real reason she had come to see me. She wanted to know if I wanted the medical team to administer life-saving procedures – if my son was born alive and needed them. Or, if I wanted to just hold him and let nature run its course.
I couldn't respond. Why was she even asking me this? I thought once you passed 24 weeks gestation you were in the clear. I thought once a baby is born and able to live outside his momma, what else could go wrong?
Well, it turns out … a lot.
After her question started to sink in, I said, "Yes! Do everything!" Still confused, and in disbelief, I continued, "Is that even an option? I mean, do people do that? When would that ever be a good idea, to not save your baby?"
And so – and it was so hard to hear – the specialist told me that yes, people sometimes do take that option, when their babies have only a slim chance of living and the almost inevitable months in the NICU would mean prolonged suffering for the baby as well as for the parents.
I cry now thinking about that conversation, but I didn't cry then. I didn't cry when my doctor left the room, and I didn't even cry anytime during the week I was in the hospital before being released to wait out the last of my pregnancy at home. I didn't cry, because I didn't realize my doctor thought we were very possibly "those" parents and "that" baby with that slim chance.
I didn't feel the magnitude of this talk until my son, Daniel, and I were both being released from the hospital a week after his birth. My specialist, baffled, said never in her fifteen years as a maternal fetal medicine doctor had she seen such an outcome from a pregnancy like mine. I looked at Daniel in his "going home" outfit and was hit with the reality that the outcome of this pregnancy could very possibly have ended up differently.
Looking back, it's terrifying. It's terrifying to realize what could have been. But remembering that talk makes me even more grateful for my time with Daniel. Even on our bad days with him – like when I get a call from school because he flushed his glasses down the toilet, or in winter when we are all fighting pneumonia for a month at a time.
What does it feel like to be told your unborn baby might not make it? Total disbelief. In that moment, it's like you are a mere spectator and the whole ordeal is happening to someone else. It's news that you cannot even begin process until later, like the waves of a tsunami after an earthquake.
But we are among the lucky ones. Our baby did make it. And I know, and my heart breaks at the thought, that not every family is so lucky.
Opinions expressed by parent contributors are their own.