Throughout my life, whenever things got rocky, I’ve always blamed myself. I’d say to myself, “I didn’t try hard enough”, “I must have screwed things up.”, or “If only, I was better…” Naturally, when my daughter was delivered at twenty six weeks gestation due to severe early onset preeclampsia, I initially blamed myself.
Despite it’s crowded conditions and chaos, the NICU is a lonely place. There was plenty of time for reflection in between my heartbroken sobs and pleas for her life. I had three months to replay every moment of my pregnancy. I wanted… rather, I needed… to know what I did wrong to cause my only child’s suffering. It would have been easier to blame myself.
I went through a check list in my head. My husband and I had waited until we were ready to have a child. We had a stable income with “good” insurance. I followed the doctor’s instructions flawlessly, made healthy food choices, took prenatal vitamins, avoided caffeine, and didn’t go near cigarette smoke. I even received a clean bill of dental health before becoming pregnant because I had heard that oral health was important in pregnancy.
Maybe I was a little too uptight. But, I had someone else’s life in my hands. I wanted to give my baby everything I possibly could. I didn’t want to screw up my pregnancy.
Even though I checked every box, it wasn’t enough to protect me.
Imagine my horror when at twenty four weeks gestation, I was diagnosed and hospitalized with preeclampsia. Actually, it wasn’t horror at first. It was disbelief. I said to myself, “It’s a mistake. Things like extreme prematurity doesn’t happen in pregnancies like mine. These are the kinds of things that happen to other people, not me.”
After a week on hospital bedrest, a nurse told me that I didn’t have much longer until my baby’s delivery. I cried myself to sleep that night. I’m ashamed to admit it now but, I remember thinking, “It’s not fair. I did everything I was supposed to do.”
Ten hours into my baby’s twenty sixth week of gestation, she was delivered because we were both dying. She weighed 790 grams (just under one pound twelve ounces).
During her three months in the NICU, I went from blaming myself to understanding that sometimes you just draw the short straw in life. Good and bad things simply happen.
We left the NICU happy that she survived. It was enough at the time.
However, our peace was short lived. We had to deal with the blows the country’s broken healthcare system dished out. Despite having what is considered “good” insurance and a decent income, our medical debt is insurmountable. Then, there are the automatic denials. Yes, I regularly fight to receive a service I pay for. And, there are the impossible choices. Do I pay the exorbitant co pay for my asthma medication or the co pay for her therapy? (It’s not impossible, really. I pay her copay and go without mine.)
As twisted as this all seems, I still would have stoically carried on. I assumed the hardships were the price of a miracle. I told myself it was the “anything” I swore I would trade for her survival during her first few weeks.
That little bit we still have left is threatened. Without the preexisting condition and lifetime cap protections of the ACA, my daughter is uninsurable. My daughter’s future looks pretty bleak without insurance.
Currently, services such as physical therapy, occupational therapy, and speech therapy allow her to develop skills to lead a typical life. Likewise, her doctors manage any complications that arise from her early arrival. Because of this careful management, she is growing and developing well. She is a bright, inquisitive, joyful, and beautiful child with incredible potential. Taking away these services is stealing her chance.
I won’t let that happen.
A flood of emotions was triggered by her premature birth. The one that hurts the most is the injustice of the ordeal. Despite Rep. Mo Brooks remarks (After which, to his credit, he immediately back pedaled. At least, he understands how callous his words were.), my daughter has led “a good life” and we’ve done everything “the right way”. It didn’t work out for us like we had hoped. And, it cost us nearly everything.
We’ve surrendered our comfortable middle class lives, our dreams, our security, my health, and our dignity due to this country’s healthcare system’s shortcomings. This is why I will fight until my last breath. I have nothing left to lose.
Say whatever you want about me. Call me a radical, a libtard, an activist, or whatever you please. The reality is I’m just a mom. I will continue to lobby, write letters, make phone calls, march, and volunteer at free clinics. I will do whatever it takes. At this point, the only thing I have left is her. And, I refuse to give up on her.
This is bigger than partisan politics. It’s about people’s lives.