When we moved into our house, we did so with the intention that it would be our baby’s first home. We put together a crib, painted a nursery, and got everything ready to bring home a newborn baby.

But life doesn’t always go as planned.

Before our son Jonah was born, we learned that he was severely growth restricted. For whatever reason, he was having a difficult time growing in-utero. After spending two weeks in the hospital while I was pregnant, the doctors decided that Jonah would be better off in the Neonatal Intensive Care Unit (NICU) than inside my body. He was born via c-section and weighed 2 pounds, 11 ounces. Jonah fell in less than 0.1 percentile. This means that out of 1000 babies his age, he would be the smallest. Shortly after being born, Jonah moved to his actual first home: the NICU at Golisano Children’s Hospital. My husband, dressed in disposable coveralls, walked with him to the NICU. Jonah stayed there for the first 58 days of his life.

In those two months we had great days, good days, bad days, and really, really bad days. One of these really, really bad days started with a middle of the night phone call, telling us that we needed to come to the hospital. Jonah was suspected to have something called NEC: Necrotizing Enterocolitis. NEC is a severe stomach condition where air becomes trapped in the bowel wall, potentially causing a slew of life-threatening complications. A quick google search that night led me to the statistic that the mortality rate for preemies with NEC is between 10-50%. I don’t remember the drive to the hospital. But I do remember asking if my baby would live, and being met with a harrowing “I hope so.”

Do you want to know what I didn’t think about during all of this?

The bill.

I was worried my baby would slip back into critical condition. I watched him through the isolette windows or held him on my chest, and prayed and hoped with everything in my body that he would be okay. And in those moments, there wasn’t one part of me that was concerned about the cost – all I wanted was for him to be okay.

And thanks to the incredible care he received, he is.

But that care came with a hefty price tag: $750,000. Three-quarters of a million dollars worth of life-saving care for an infant born in critical condition. It doesn’t include the care I received for two weeks while we sat in the hospital waiting for the next test, the next ultrasound, and the next set of scary news. This also doesn’t include the emergency surgery Jonah needed a few weeks after his discharge from the hospital. All in all, we were looking at about $800,000 in total medical bills, travel, and lost wages. Jonah is worth every penny and infinitely more. Thankfully for us, my husband’s employer-provided insurance covered this care. But that is not an option for everyone. For many, Medicaid is the only answer.

Many NICU babies rely on Medicaid for the care that saved their lives. For some this is determined by financial status, but others it is simply due to the complexity of the care they need. For people who have private insurance, Medicaid can step in to cover costs that the insurance company refuses. For others who rely on Medicaid for the totality of their coverage, it is the only option.

About 59% of babies in the NICU are preterm like Jonah, meaning that they were born before the 37^th week of pregnancy. Many more are admitted to the NICU due to other conditions requiring more support. There are over 300,000 babies admitted to US NICUs each year. Medicaid covers about 40% of all US births, 12% of which are preterm. Additional children are enrolled in the program once they are deemed medically eligible, increasing the total percentage of kids on Medicaid in the NICU substantially.

With the recent cuts to Medicaid, it has become clear that around 11.8 million Americans may lose coverage. Hospital jobs will be eliminated, and countless children’s coverage will be at risk. This is projected to limit the quality of care received, as it will place increased pressure on physicians, nurses, and advanced practice providers – causing longer waits and lowering the quality of care. It is imperative that New York State does everything possible to keep children and families insured when faced with federal cuts.

Without action, care will become more expensive and place increased pressures on children, families, and healthcare workers, in addition to long-lasting economic damages felt in communities. In settings where time is of the essence and quality of care is a matter of life and death, this could be catastrophic. The high-quality care Jonah received saved his life before he was even born, and many times after. This is credited entirely to the amazing people who choose to dedicate their lives to helping kids.

Jonah had a lot of ups and downs during his time in Golisano Children’s. It was the first home we knew as a family of three. When the day came when I was asked “hey Emily, do you want to take your baby home?” I was beyond excited. And then we got home with our precious baby and felt like we were on Mars. There were no more glass doors where we could peek our heads out and ask a nurse a question. There were no banners on the wall with his name. There were no cords, no monitors, no cleverly designed rooms that hid the fact that you were in an intensive care unit. Our house wasn’t Jonah’s first home. His first home was the place that saved his life.

To learn more about how federal changes to Medicaid will impact New York families, please visit: Medicaid Matters | NY

To learn more about The Children’s Agenda’s advocacy on family health, please visit: Health – The Children’s Agenda

Emily Bemis is Research & Policy Analyst with The Children’s Agenda.