Premature Baby, Preexisting Condition

“I am terrified that one day we will not pursue a treatment our son needs because we can no longer pay for it.”

The week the Senate debated a bill that would revoke health care for millions, I was trying to feed my son, who was wailing from hunger. A tube extended up his tiny nose, pumping breast milk and extra calories into his belly. I rubbed his cheek, careful not to disturb the tape holding the tube in place. The fortified milk upset his stomach; he cried and vomited and cried again—a pained, scared sound. I shut off the feed and let him fall asleep against my chest. I knew he’d lose weight if he couldn’t finish his feedings, but I couldn’t bear to hear him cry like that.

I always knew parenting would be difficult and full of surprises. But I’ve lost track of everything I didn’t expect. A partial list: Going into early labor and meeting my son two and a half months early. Becoming a NICU mom and befriending all of the nurses in the secret hope that they’d take the best care of my son. Bringing him home on a feeding tube and having to hold him down every few days while I pushed the tube up his nose and into his stomach. Waking up at night, terrified that one day my husband and I won’t be able to afford to make him better.

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Being born prematurely is a preexisting condition. My baby arrived ten weeks early, earning him the dubious distinction of “extremely premature” and placing him at risk for a whole host of developmental delays and health complications. Had he stayed in my body, conservatives in Congress might have claimed to value his unborn life. But once he was out in the world, they tried to strip every regulation and protection that could keep him healthy and give him a fair shot at life.

And prematurity was only the first hurdle. One week after he was born, doctors discovered another condition: My tiny baby had a not-tiny hole in his heart. It had nothing to do with being premature, the doctors said; the hole likely appeared in my ninth week of pregnancy. Before my son was formed, the hole was there. It preexisted.

I paid close attention as politicians debated the future of health care to distract myself from the fear that dogged my every moment. The following week, a cardiac surgeon would crack open my baby’s sternum and perform open-heart surgery to repair the hole. We would endure another hospital stay, another round of waiting in terror. Parenting, I have already learned, consists of bright flashes of brilliant joy followed by long nights of anguish.

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I, too, was born with a preexisting condition. My uterus is split in two. It’s called a bicornuate or subseptate uterus. Some versions of the condition are treatable with major surgery; others are not.

I found out about my uterus in college, but for years I either didn’t have insurance or couldn’t afford the copays to treat it. Last year, I finally began seeing doctors to assess surgical options when I received some startling news: I was already pregnant.

It’s likely that my condition had something to do with my preterm labor and delivery. It was easier for my son to kick through the amniotic sac and break my water early. I spent two and a half weeks on hospital bed rest. I could get up, slowly and carefully, and wheel my IV tower to and from the bathroom, but that was the extent of my physical activity. One week in, I was allowed a five-minute shower; it was one of the greatest pleasures of my life. I spent my hours watching the tree outside my window slowly form buds, as the days alternated between the gray downpour and sunny blaze of D.C. in springtime. I kept my hands spread on my diminished belly and whispered to him: It’s not time yet, be a good boy, stay and grow stay and grow stay and grow.

Finally, an infection of the placenta brought my son into the world one day shy of thirty weeks. He spent the first nine weeks of his life in a hospital bed, most of it in neonatal intensive care. My husband and I were beside ourselves with joy when we finally brought him home—and wracked with fear as we began caring for him full-time. We spent ten to twelve hours a day feeding him and soothing him so that he could keep food down, administering meds to drain fluid from his lungs and keep his heart running efficiently.

The hole, about four millimeters wide, allowed blood to push against his lungs and make his heart and his lungs work overtime. He took at least seventy breaths a minute, double the normal rate; essentially, he was hyperventilating all the time. It was hard work, and he wasn’t gaining weight like other babies his age—even adjusting for prematurity, even though we pumped extra calories into his belly at every meal.

“Technically,” the doctor said, “he’s in heart failure.”

I thought about that sometimes when I watched him sleep, when I saw his chest rise and fall in quick staccato breaths. Another condition of parenthood: believing your baby is perfect, and fearing the day you are proven wrong.

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The weeks after we brought our baby home were some of the most difficult of my life, but the biggest challenge lay ahead. I was terrified of all the potential risks of open-heart surgery on an infant: fear that his heart will stop functioning on its own and he would need a pacemaker; fear that the blood transfusions he needed will infuse him with some as-yet-unknown disease; fear that he would acquire an infection. Other, darker fears I couldn’t bring myself to name. Thankfully, the surgery went well, and now our son is thriving.

Given this, it sometimes seems wrong, so petty and inconsequential, to worry about medical bills. We were lucky: We had good insurance through my husband’s employer, although “good insurance” still meant significant copays and the fear of uncovered expenses. But every time I hear a Republican lawmaker railing against Obamacare and its protections for people with preexisting conditions, people like my son, I worry that this surgery will be the last one we can afford. I am terrified that one day we will feel forced to choose—as if it were a choice—not to pursue a treatment he needs because we can no longer pay for it. I worry that one day no insurance company will cover him because he already hit, in the first few weeks of his life, the dollar amount they are willing to spend to keep him alive.

My son cannot yet take care of himself; that’s a job for us: the team of doctors and nurses who care for him; my husband and me, who will move heaven and earth to comfort him; our family and friends, who will support us in every way they can. And the lawmakers who might hold our baby’s life in their hands. I pray they feel its weight.