America Has Never Taken Its Preemie Crisis Seriously

It’s been 10 years since my daughter was born. That was the best and worst day of my life. My daughter, Layla, turns 10 years old tomorrow — it’s a bittersweet day for me. Her birthday marks the moment when the person most precious to me came into the world, but it’s also the anniversary of the worst and scariest day of my life, a time I still have nightmares about, even a decade later.

At first, my pregnancy was uneventful — some vomiting and strange food cravings, but nothing out of the ordinary. Then, around 28 weeks in, I noticed that my feet were so swollen that I couldn’t get them out of my shoes. A few days later, at a routine checkup, my OB took my blood pressure three times before she told me I had to walk across the street to the hospital. “Don’t stop anywhere,” she said. “Go now.”

It was a Thursday. After a rapid three-day decline that had my liver failing and my body so swollen that nurses couldn’t draw blood, Layla was delivered on Sunday. “You fell off a cliff,” a specialist later told me.

I was diagnosed with a severe preeclampsia that developed into HELLP syndrome — a deadly pregnancy complication that breaks down your red blood cells, causes your blood pressure to skyrocket (putting you at risk for seizures), and damages your blood’s ability to clot and your liver’s ability to function.

Seeing your baby like that forever changes you; your brain tells you not to get attached.

The ironic thing about HELLP is that you start to improve as soon as your baby — brought into the world too soon — is born. The only way to save my life was to deliver Layla, born 12 weeks early, weighing a little over two pounds. (It’s hard to describe how small that is — my father-in-law noticed at the time that her legs were about the size of his index finger.)

As I got better, Layla’s struggles were only starting. In the two months that she spent in the hospital, Layla would need a blood transfusion, treatment for a collapsed lung, a feeding tube, a central line IV that snaked up close to her heart, a ventilator, and a maze of wires that tracked her oxygen and heart rate. She spent the first years of her life in and out of hospitals with lung issues and receiving early intervention to help with potential developmental delays. Even today, she has a mark on her nose from a breathing tube that was too large for her tiny nostril.

Seeing your baby like that forever changes you; your brain tells you not to get attached. The beeps and crashes and your child turning blue when you hold her does something too: A third of parents whose babies are in the NICU end up with PTSD. I was one of them; for more than a year, I had blackouts and flashbacks, memory lapses, and a whole brain numbing that made it difficult for me to feel anything — not sadness, not love, not hope. I had terrible depression for years — from both the physical trauma and the guilt I felt at my body’s failure to bring Layla into the world safely. And all these years later, I still feel the sting of not being able to have more children because of the risk to my health and life.

Unfortunately, my experience is not a unique one in America; the United States has a higher rate of preterm births than any other developed nation, a rate that continues to rise. It’s also a crisis that disproportionately affects Black mothers and babies. (Black women are two to three times more likely to die in childbirth than white mothers who have the same condition.)

For a country that claims to value children and families, the maternal mortality and prematurity crisis here is downright shameful, especially because so much of it is preventable. The lack of affordable health care directly impacts the number of premature babies being born in America, premature births and infant death among Black babies have been linked to the stress of racism that their mothers feel, and premature birth in general has been tied to air pollution. In fact, doctors believe they’ve seen fewer preemies in the months since the coronavirus hit in part because there’s been less traffic on the roads polluting the air, and the physical stress some pregnant women have at work has lessened because they’re working from home.

There’s no reason we can’t greatly reduce the number of babies born early and the number of mothers who suffer or die while giving birth. Americans claim they care about fetal-maternal health; now they just need to show that they do. That means listening to women, Black women especially, when they say something is wrong with their pregnancy. It means not polluting the environment and making mothers sick. And it means prioritizing women’s mental health and stress reduction, and ensuring that health care is affordable.

None of these are impossible tasks, but in the 10 years since I’ve had Layla, the United States has barely made a dent.

I’ll be happy celebrating my incredible kid this weekend — how she went from fragile and tiny, covered in wires and tubes, to tall and strong, hilarious and Minecraft-obsessed. But there will be a tinge of anger and sadness there too, for the healthy start my daughter missed out on — and the knowledge that other mothers and families will suffer the same way I did, and worse, needlessly.

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