Open Letter to Senator Pat Toomey: Who Will Pay for NICU Babies?

March 8, 2017

Dear Senator Toomey,

Usually I hand-write letters so you don’t think I’m copying and pasting from some source online, but I type faster than I write, and I’d like to tell you a personal story that’s very dear to me.

Today, International Women’s Day, always feels like my second daughter’s birthday, because six years ago today, I went into labor at 31 weeks; the baby was 4 lbs, 5 oz, and so breech her feet were literally sticking out of my cervix. That was a bad day. Fortunately, 5 years and 359 days ago, March 14, 2011, what could have ended very badly ended happily, with the C-section delivery of a perfect little peanut of a preemie. I’ll call her GJ here.

Nineteen months earlier, my first daughter, at 34 weeks, had been eerily still for hours, not kicking or responding to stimuli. After an emergency induction, we realized she’d aspirated meconium in the womb. She was born very ill, and was whisked off to the NICU for emergency oxygen treatment for her persistent pulmonary hypertension. We’ll call her EB.

When I was pregnant with EB, I was on a PPO. I thought it was a good choice, because I hadn’t expected to get pregnant so quickly; it turned out to be a terrible choice, as her illness and my resulting infection racked up costs of over $200,000 inside of a week. Fortunately, we had an annual cap, but we still spent $12,000 out-of-pocket. I’ve had a career for a long time, and between California’s Pregnancy Disability Leave, what I was able to save, and our families, we were able to pay off that $12,000 within months, without too much hardship.

As you can imagine, I am extraordinarily grateful for that good fortune. We didn’t earn our families’ money, but we were grateful to have it. My job didn’t have to offer 6 weeks of paid pregnancy leave, but I was grateful to have it. Having my baby in California meant I got PDL, and I was grateful for that, as well. I often lay awake at night, thinking, if I’d been in that same position in a different state, in a different city, with families living paycheck-to-paycheck, and I’d been laid off at the start of my pregnancy—what would have happened to us? A tax credit certainly wouldn’t have made much of a difference to us in that case.

With GJ’s birth, I didn’t make the same mistake; I got an HMO. I paid $500 out-of-pocket all told: that’s for one week of mandatory hospital bedrest, one week of C-section recovery, and GJ’s three weeks in the NICU, as she put on enough weight to be discharged. Again, I wonder: what if we hadn’t had healthcare? How would we have paid for her care? What price is the life of a living, breathing baby?

If we spend so much time caring for unborn fetuses, why don’t we spend as much money and time caring for the lives of newborn babies and their mothers?

If we spend so much time caring for unborn fetuses, why don’t we spend as much money and time caring for the lives of newborn babies and their mothers? Don’t we care about them, as well? Do we tell a mother that a small tax credit will make up the difference of a $200,000 bill for her child?

My story doesn’t end there. A doctor had told me I have a condition wherein any pregnancy I’d have following GJ would track similarly: I’d have to be on bedrest for the last months. I’d need cerclage, meaning they’d literally stitch my cervix shut to hold the baby in. And for all that, she’d likely still come early, and I’d have a third baby in the NICU.

I suffered nightmares for the first two years of GJ’s life, terrified that I would get pregnant again—I dreamed of pregnant women, abandoned in the rain, hailing cabs that wouldn’t stop for her. I dreamed of being in the NICU, and doctors telling me I couldn’t touch my baby. I dreamed of being pregnant myself, and having tiny babies that I had to carry in a bubble, outside my body. Physically, the idea of intimacy so terrified me—even using condoms—that my husband and I grew apart.

My stress finally helped my husband decide to get a vasectomy, two years to the date that I went into labor with GJ. The dreams went away, although I still suffer anxiety attacks triggered by places that remind me of the hospital and NICU where I spent three weeks of my life. (Including my grandmother’s nursing home.) And we’re still dealing with the aftermath of that lack of physical intimacy for so long.

How can the party of so-called family values tell happily married couples that they must either suffer a sexless marriage or pay for the full cost of sick babies?

Again, I think: we were able to pay for his procedure. You’re married, and surely you understand how important physical intimacy is to a healthy marriage. What about married families who can’t afford contraception? Do we just tell them to stay abstinent? Do we tell them to suffer through their marriage? How can the party of so-called family values tell happily married couples that they must either suffer a sexless marriage or have sick babies? And who will pay for the sick babies once they’re born?

If I hadn’t been so fortunate, the young, healthy people paying premiums under the ACA mandate would have picked up the cost of GJ’s care. With EB, born in July of 2009, we’d have gone bankrupt. The ACA would also pay for anti-anxiety meds that I take very occasionally, so I don’t end up shaking on the floor of a bathroom just because I want to visit my grandmother. The ACA would have helped pay for my husband’s vasectomy.

I’m grateful my family has the means to pay for our family’s healthcare, but my heart aches for the families who are not so fortunate—the very families who need the protection of the ACA. These families will not benefit from a small tax break. They will pay and pay and pay, before pregnancy, during, and after, and I, for one, am happy to do my share to ensure no mother has to go through what I went through and worry that she won’t be able to feed her family while she pays for it.

Please, show you’re a compassionate man who truly cares about families, and fix the ACA. Don’t destroy it and replace it with a plan that will only benefit people like me—I don’t need more benefits. I’m fortunate enough already.



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