All Preemies Aren’t Created Equally

M, a few days old

In the NICU, everything is relative.

The term preemie can mean a multitude of things: everything from a baby born at 36 weeks and 6 days gestation who weighs 7 lbs and never spends a night in the NICU to a baby born at 22 weeks who weighs 14 oz and spends 200 days in the hospital.

Sometimes, strangers tell me they know a preemie who was the tiniest baby they’ve ever seen–their “tiniest” baby was my two-month-old. M weighed exactly 5 lbs when she left the hospital at 60 days old. At her smallest, she weighed 1 lb. 15 oz.

In fact, I was our family’s preemie until my kids showed up. I weighed 5 lbs 6 oz at birth and was born 4 weeks early. Everyone talked about how tiny I was, how my head fit in the palm of my dad’s hand. Little did we all know that a whole baby can fit in the palm of a hand!

I remember when J was first born, I wanted desperately to know what his survival odds were, but I was too terrified to ask anyone. The doctors and nurses didn’t like discussing a baby’s prognosis because no one really knows. A 23-weeker can surprise you by coming home with no oxygen six weeks before her due date, and a 32-weeker can linger long after everyone thought she would go home. I knew a baby with a brain bleed whose doctor told his mother, as a way of explaining his brain damage, that he would play on the football team but he would not be the captain. Now, at 4-years-old he’s Leader of the Pack, well above his developmental goals and smart as a whip.

Taking J’s temperature when he was about a week old.

While J’s odds of survival were around 80%, he had a 66% chance of having a disability at age 3; he has no disability. He was born too fast for steroid shots to develop his lungs; yet, he was only on the ventilator for a few days. He didn’t catch his first cold until he was 17 months old, and his first serious illness was this spring as a 3.5-year-old.

How he did this well remains mostly a mystery to me. He was healthy in the womb, he was in the 70th percentile when he was born, and my obgyn was so proud of the fact that he was intubated immediately after birth so that he never went without oxygen. He responded well to the surfactant given to him after birth that helped his lungs inflate properly, which meant less time on the ventilator. Less time on the ventilator reduced the scarring in his lungs, which impacts lifelong respiratory health. One bit of good fortune translated into more good fortune, but that addition doesn’t always work. Sometimes, it just seems that there’s no rhyme or reason to the outcomes.

J is not the norm for a 26-weeker. In fact, our pediatrician loves to show him off to visitors in her office, always asking my permission to share his story. J shows us what is possible with preemies. A few times this year, I’ve seen the cost of saving preemies thrown around with so little consideration for what those numbers mean. Sure my children together racked up over $1 million in hospital care, but their excellent care at birth has hopefully paved the way for decades of healthy living in which they will need little healthcare. So what if it is expensive to save babies? I hate to see our priorities when we as a society say we are unable or unwilling to give babies a chance at life.

Much has changed in NICUs in the last 30 years that has expanded the possibilities for preemies. More and more kids like J go on to live relatively normal lives thanks to all the advances. But, what is surprising is that there is still so much disparity from one hospital to the next. Within my own town, two hospitals will attempt to resuscitate 22-weekers, while another one won’t intervene until the baby is at least 24 weeks gestation. Sometimes, a baby’s chances depend on the medical care available in those first critical minutes. And the disparity doesn’t stop there. The quality of the doctors, nurses, specialists, and therapists can vary widely. Techniques common in one hospital are rare in another one, and conveniences such as bedside breast pumps might seem like perks when really they can alter the health of a baby at a time in their lives when breast milk is medicine.

So, my 26-weeker isn’t someone else’s 26-weeker. One preemie’s path in no way defines the journey for other babies.

I’ll admit that I am a preemie snob. Please forgive me. It’s not just my own children but all the other babies I’ve met along the way who give me pause when a grandmother brags about her miracle born five weeks early. I don’t doubt that baby is a miracle–all babies are treasures of good fortune–and I don’t doubt that any hour with a baby in the NICU is a miserable one. It’s just that it’s challenging for All the Preemie Mamas to keep our mouths shut. We want to brag about the miracles we’ve seen, the things that shouldn’t have happened, all the dozens and dozens of babies we watched work their way through the NICU who wouldn’t have lived more than a few hours or days just three decades ago. Their accomplishments shouldn’t be diminished by the preemie down the street who weighed 4.5 lbs at birth, was breathing on his own at 33 weeks, and spent only two weeks in the hospital. That story is amazing, but goodness could I tell you some humdingers.

Like the barely 24-week twins whose mother was prepared to lie about their gestation to make sure they were resuscitated at birth. Or the 26-weeker who came off oxygen at age 10. Or the set of quads whose mother was encouraged to abort two of them to increase their survival odds. The stories go on and on and on.

Preemie stories are just as unique as the babies who inhabit them, each one of them different and special.

Seriously, I should write a book…

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