I’ve always believed that America has the best health care in the world, but I never believed that I would need to make extensive use of it. That all changed when my wife gave birth to pound-and-a-half triplets at 24 weeks. In our years long fight to keep our children alive, we were constantly amazed both at what modern medicine made possible and at how fragile human life is. Medical science was unable to keep my son Raymond alive beyond one week. My son Daniel came home after three months in the Neonatal Intensive Care Unit (NICU). And my daughter Sofia, after enduring several surgeries, came home after eight months on a ventilator and trach, requiring round the clock nursing care for the next four years. Three major surgeries after that, she finally breathed through her mouth and her nose.
The fact that we had two survivors was a miracle. The fact that private insurance covered the almost $10 million total bill was a miracle as well. Our insurance was provided by the largest hedge fund in the world where I worked. Its lack of limits was due to the generosity of its Billionaire founder. It was not typical health insurance.
Every year, 15 million babies are born prematurely around the world. Whether they live or die depends far too much not only on where they are born but on the ability of families to access care.
In the U.S., most insurance has gaps and limits in coverage that you don’t learn about until you or a loved one are sick. We spoke to families with limited choices in hospitals, who had large coinsurance or low coverage limits. Their children could not receive the best health care in the world because even with insurance, they couldn’t afford it.
There are many families of preemies where parents had to both be nurses and somehow work full-time jobs. Several times we had to be nurses ourselves, including most memorably one summer night as told in my memoir, Table for Five.
The particular nurse on shift this night had been on duty just once before during the day, and she was not prone to hysterics or exaggeration. So when she started screaming, I literally jumped out of bed and ran downstairs with my heart beating out of my chest, knowing that this was for real. Christine followed me.
Sofia was in her crib, already blue and unresponsive when I saw her. At her size of roughly 13 pounds, it takes just two or three minutes for her to suffocate, so time was short. I snapped out orders for 911 to be called. Christine went to Sofia and my mom held Daniel who had woken up from the commotion as the nurse, having regained her composure, explained that Sofia wasn’t breathing—her tube may have gotten misaligned—and the backup trach the nurse had switched to already wasn’t working either. We put Sofia on the floor and the nurse began CPR as I reached for the second backup trach and then the third (we kept six nearby in various sizes and readiness) and inserted each of them in turn, trying to hold the trachs in place with one hand while at the same time pumping pure oxygen through the trach from our full-size oxygen tank that I had turned up full blast. I used the special vacuum to try to clean through the trach opening, in case there was a blockage lower in her airway. I was utterly panicked but somehow kept the would-be tremors in my hands at bay.
One-one-thousand. Two-one-thousand. Sofia didn’t respond. Three-one-thousand. Christine watched frantically, fear emanating off her in waves.
The nurse and I kept at it—she with the CPR and me with the Ambu-bag and oxygen at the trach—as the sirens grew closer. Finally, after an agonizingly long time, Sofia took a breath and color started flowing back into her blue-tinged face. By the time I looked away from my daughter on the floor, the room was full of the people my mom had let in while we worked. A paramedic had a defibrillator out and started putting it away as he detected a steady pulse and reconnected her instead to the pulse oximeter. The nurse stopped CPR. We were out of danger. It couldn’t have been more than 10 minutes since I woke up.
Years later I was considering an opportunity in the UK. Sofia still required nursing and still had surgeries to undergo. While speaking to the head of benefits at a major bank, I tried to probe and find out the limitations in their insurance. I might as well have been speaking Greek. The concept that children could not receive the care that they needed was unthinkable due to their National Health Service and supplemental private insurance.
One in ten babies are born prematurely, so more and more Americans will need similar care to my children. They should be able to get that care without risk of ruin. As the incoming Biden administration evaluates a public option, they should pay close attention to the needs of these preemies and their families. They should go further than the ACA to provide for the needs of these smallest Americans.
—
Adapted from original publication in the Houston Chronicle and is republished on Medium.
—
Photos courtesy of author