How I'm Fighting For My Son's Life

I have spent the majority of my career as a nurse in a Neonatal Intensive Care Unit (NICU)—and as a new mother, I should not have to declare bankruptcy to get my child the necessary care that he deserves.

I always wanted children, and when I wasn’t able to conceive, I decided to adopt. I knew I wanted Noah the moment I got his file. Through his cleft lip and palate, he had this amazing smile. It lit up his face.

I met Noah in October 2017 when he was two years old, and I loved him immediately. He was a happy child from the beginning. He was curious about everything and how everything worked. He enjoys playing with his Legos and cars—and he also lives with a multitude of medical challenges that no child deserves to face.

Soon after he joined our family, Noah underwent surgery to repair his cleft palate. If he had gone untreated, it would have caused severe complications in his ability to swallow, chew, and even breathe. Without the surgery, he was at risk of hearing loss. He was at risk of developing speech problems.

In short, Noah needed to have the surgery to live and maintain a quality of life.

My family was under the impression that the necessity of this surgery would be clear to anyone, but when we submitted his hospital bills to our insurance provider, we were denied. Blind to my son’s humanity, the insurance companies were allowed to refuse his coverage.

I was left with a $23,000 bill. I cannot afford to pay $23,000. Few Americans can find more than $500 in an emergency.

I have been in contact several times with the insurance provider. I have been told several times that it is being looked at, but I have yet to get a definitive answer.

Part of his initial medical check-ups required Noah to see the dentist. After two years in an orphanage, he had never received proper dental care. He had cavities and he had decay.

At the dentist office, Noah received a dosage of a gas sedative, but it wasn’t calming him down. We tried multiple times, but we were unable to settle him safely in the chair so that he could receive his dental treatments.

Ultimately, the dentist recommended that we find a doctor who would sedate him instead. My son needed the dental work complete; it was out of the question.

I returned to the insurance company and explained the situation. And once again, we were denied.

I remember staring at my phone just asking, “Why won’t you allow me to care for my son? Why isn’t any of this covered by the insurance that I have been paying into nearly my entire adult life?”

After fighting tooth and nail with the insurance company, they finally approved the procedure. It shouldn’t be this hard to get acceptable health care for your child. I shouldn’t have to take time away from Noah to be the liaison between the insurance company and the doctors. It shouldn’t be this hard to get a procedure that is deemed necessary for the well being of my child.

As a NICU nurse, I know the struggle some of these parents will face due to all the medical issues these babies will have due to their prematurity. It’s bad enough that these babies are fighting to survive, but their parents are fighting too. They should be focusing on their child, not on what the insurance is going to cover or how much the insurance is going to cover.

But the issue does not end with insurance programs—the primary culprit is our politicians, who refuse to create a health care system that defends everyone.

In the last few weeks, we have seen unprecedented attacks on Americans’ access to quality, affordable, health care. We saw the Department of Justice unveil a lawsuit against the Affordable Care Act (ACA), imperiling the 130 million Americans who live with a pre-existing condition. We saw our presidential administration finalize rules for “junk insurance,” which are no more than empty health insurance plans that fail to meet the ACA’s consumer protection policies.

And we have seen political groups jump at the opportunity to fill a vacant Supreme Court seat with a Justice who would refuse to defend the health care that millions of working families — like my own— rely on. In Florida alone, over 2.3 million children are enrolled in Medicaid.

At the end of the day, this is a question about defending children’s access to health care. I hope that my lawmakers will choose to stand with me.