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Heavy-hearted

The premature baby I wrote about last week has been weighing heavy on my heart since my niece first messaged me. Constantly in my thoughts and prayers, I anxiously waited news. It came yesterday. He did not survive. My heart just aches for his parents.

Modern medical science is awesome. It’s doing things we could only imagine years ago. I’m sure you may have seen or read they are sometimes able to save babies as early as 22 weeks gestation. My question is, at what cost (and I don’t mean financially)? The NICU is a long, lonely, terrifying road. But even when these babies make it home, they are not done with prematurity. It takes years to know all the repercussions of a too-soon birth.

I often feel our story is a poor representation of what it means to have a micro-preemie. Big Man somehow avoided all the worst he should have faced. He never had to have surgery on his tiny heart to close a PDA. He suffered no retinopathy of prematurity (ROP). He suffered no hearing loss. He had no feeding issues. He doesn’t have cerebral palsy. His brain bleed – extremely common for micro-preemies – resolved on its own. He was never readmitted once he came home from the NICU. Although we did spend three years in follow-up care, which included two winters of monthly synagis shots to keep him from getting RSV, along with some therapy for high muscle tone (an early indicator of cerebral palsy) and a mild speech delay, and he has asthma and ADHD (both of which could easily be the result of pure genetics and nothing to do with his premature birth), he has come out the other side relatively unscathed. That is not normal for a 26 weeker.

Now, he was born almost 15 years ago. Medical science has come a long way even since then. When he was born, 24 weeks was the edge of viability. Some 23 weekers were being saved, but not without major, lifelong medical and developmental issues. The day I was admitted, at 23 weeks and 4 days, the doctor basically said I needed to stay pregnant at least three more days. They would not resuscitate before 24 weeks. And on the day Big Man was born, at exactly 26 weeks, they still asked what our wishes were as far as lifesaving measures.  Medical science has not come so far that all micro-preemies survive.  And while statistics have improved, still one in nine babies is born too soon in the US each and every year. That’s half a million families facing NICU stays, fear, heartache, uncertainty, and even the death of their precious children.

People don’t like to talk about babies dying. It’s uncomfortable. But it’s been a part of my life since Big Man was in the NICU. I had someone say to me, and  I kid you not, “At least if he passes now, it’s not the same as if he was six or seven years old and you really knew him.” Seriously? Whether that child is hours old, or fifty years old, that pain in unimaginable.

Why do I keep pounding this prematurity point? Because even in this day and age, even with modern medical science, babies are still being born too soon, families are still suffering, babies are still facing lifelong challenges, babies are still dying, and there is still the misconception that premature babies are just small babies who need to grow, there is still the belief being born too soon is just a blip on the radar of life, that all preemies turn out like my son. These articles talking about saving 22 weekers don’t give me hope. They make me sad, because there’s so much more to the story than they’re telling.

Please keep that mom I wrote about in your thoughts and if you’re the praying type, pray for their family. And pray that someday, I can stop writing about prematurity.

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