When you're having a baby, there are certain things you do to prepare. You stock up on diapers, assemble a crib, and read parenting books. Maybe you tour a birth center, or decide on a stroller. But then there are the things you're never prepared for. And in the wake of Senate Republicans' cruel new health plan that targets the most vulnerable Americans, families will have to start planning for the unthinkable.
The last thing on my mind when I was 28 weeks pregnant—just back from a summer vacation, just starting to think about painting the nursery—was how health coverage was about to shape the rest of my family's life. Then I got sick. Really sick.
To save my life, my daughter was delivered nearly three months early via emergency c-section. Layla weighed just 2 pounds 2 ounces, and required 'round-the-clock medical care to keep her alive. Almost immediately after she was born, Layla was intubated, a tube threaded through her trachea so a machine could pump oxygen into her lungs. In the eight weeks she stayed at the neonatal intensive care unit, Layla had a collapsed lung, a blood transfusion, a central line IV, and a feeding tube inserted.
I lost count of how many times she stopped breathing and turned blue while I held her, but remember the numbness I felt when signing a form allowing doctors to give my tiny, weak baby pain medication for the invasive but life-saving procedures she would need.
"They told me Layla would have to be in danger of imminent death for them to cover her."
Any parent who has had a seriously ill child knows what hell really is: It's seeing your baby in pain and being powerless to stop it.
In September 2010, a new provision of the Affordable Care Act banned health insurance plans from applying lifetime limits on essential care. Layla was born in August. And so it was just sheer luck that our health insurance at the time did not have a lifetime cap. If it had, Layla would have blown through that ceiling in the first weeks of her life—we would have gone bankrupt trying to save her.
Care for a premature baby can cost literally millions of dollars, and before the ACA, it wasn't uncommon for families with preemies to end up financially devastated. In the new bill, the text of which was just released today, that lifetime cap comes back. I've always wondered how it is that Republicans who call themselves pro-life could support financial ruin for parents who simply want to keep their babies alive.
My family was fortunate in more ways than one. Many babies who are born as early as Layla was have medical issues that last years; some will require a lifetime of care. Layla left the NICU breathing and eating on her own, and grew up without any lasting developmental delays. To parents with healthy children, these may seem like small things—to us, they were miracles.
This isn't to say that all was well after she left the hospital. Layla required early intervention specialists, multiple cardiologist visits, and careful preventative care. Preemies are at high risk for respiratory infections because of their underdeveloped lungs, for example; the most dangerous is Respiratory Syncytial Virus (RSV), which Layla's pediatrician gave her a special, but expensive, vaccine for.
Not long after, we moved to a new city and my husband took a new job. But our new insurance provider refused to cover the medication: five shots that we were told would cost us $4,000 each. We couldn't afford it, and a few weeks later Layla ended up in the hospital with, of course, RSV.
I called the insurance company again, and told them how sick she was. I begged. They told me Layla would have to be in danger of imminent death for them to cover her. Desperate, I called Layla's old pediatrician in New York, who was so concerned that he had me drive Layla there and gave her the shot himself. We did this every month—drove from Boston to New York to get my sick child a shot that she needed but we couldn't afford.
"Any parent who has had a seriously ill child knows what hell really is: It's seeing your baby in pain and being powerless to stop it."
Once again, we were lucky—we had a doctor willing to go to great lengths to help his patient. We had the ability to drive out of state every month. How many sick children are getting sicker because we have the ability to help them but don't?
Today my daughter is a healthy, happy six year old. But what happened in those first months and years of her life changed my family forever. We won't have more children; the risk to my life and health is too great (yet another reason the birth control mandate is so important) and I never want to put another child through what Layla suffered.
But as Republicans try to defend their health plan, I want them to answer for their hypocrisy. I want them to tell parents like me why our children's care is expendable—why their lives don't matter. I want the lies and the equivocation to stop. Most of all, I want babies like my daughter to live. The question I want them to answer is: Do they?
Jessica Valenti is a contributing editor to MarieClaire.com—read her weekly column here.