My daughter just celebrated her second birthday. What a difference two years can make!
Late on Sunday March 8, 2015, I drove my wife and our four year old son to Riverside Hospital. In the few short minutes it took us to get checked in and call Aunt Marie to pick up our son, they were wheeling my wife into surgery. Every contraction saw our daughter's heart rate drop to dangerously low levels- something wasn't right. Eleanor Marie was out and on the table within about 45 minutes.
Seizures, no blood sugar, struggling to breathe, our newborn daughter (born full-term) was diagnosed with Hypoxic-ischemic encephalopathy - otherwise known as H.I.E. - or even simpler brain damage due to a lack of oxygen at some point during the delivery. We're not sure what happened.
While my wife slowly recovered from the quick (and a bit rough) surgery, a doctor came down from the nursery to tell us that our daughter would need to be transferred to Children's Hospital. We were also told that there was a chance our daughter would never be able to eat or breathe on her own. I drove down SR 315 (at legal speeds, I'm sure) to Children's, ran across the hospital, and was stopped by a very intelligent nurse who knew what was going on already with my daughter - and that I shouldn't be in the room.
Smart Nurse.
Her blood wouldn't clot, so they were having issues getting her hooked up to the right machines. They were professionals and I was a freaked out dad.
Smart nurse.
My pastor, came and sat with me the entire day. I didn't think about costs. I had the luxury of health insurance, sick days, and the like for that immediate fear. Instead I thought about things that mattered in those moments like my son who may never get to meet his sister, I thought about my wife who only had 10-15 seconds with her daughter. I wondered if I accidentally undercooked dinner that night to cause the problem... Many thoughts were in my head.
They placed Eleanor on a cooling pad and forced her body into hypothermia to allow the brain to heal from the potential damage. We couldn't hold her for three days. Slowly they warmed her up.
As her body warmed, the immediate fears left, but new concerns began to seep in.
What will it cost to update our house if she needs to be in a wheelchair?
What do each of these tests cost?
What will potential physical therapy cost, speech therapy, tutors?
What is the real cost of each night in the NICU?
How can I handle this...?
We are middle class. My wife is in the union, and has decent health insurance because of it. But we knew that our normal health insurance would only go so far. Luckily, each test has been positive and optimistic. We aren't out of the proverbial woods yet, but things continue to look well.
We will forever be grateful for the work of the medical professionals who guided us through. It takes something special to be in a NICU serving families and children in need, a true vocational and spiritual calling.
We are also grateful for the government programs that provided for us during this time. Here are three ways that public investments, through our taxes, helped create a happy family for us.
1. Medical Research: The hypothermia treatment for HIE babies (or freezer babies as some of the nursing staff at Children's lovingly called them) was developed through research investments funded by state and local taxes. Eleanor's chance of long-term disability dramatically decreased since she received the treatment within her first 6 hours of life. They knew this because of the research.
2. BCMH: Bureau of Children with Medical Handicaps is a great program that helps families in extreme medical need have the care they need and resources to cover the costs. Remember, insurance works because everyone chips in a little bit and then the insurance company can pay out for whoever gets sick. But if all rare medical conditions fell onto our private health insurance provider, everyone else would receive less or have to pay much more. Through government programs, we can alleviate this cost. The state administered BCMH kicks in where our personal health insurance may fall short.
3. Help Me Grow: Through ongoing follow-up services, county social services (funded through county and state dollars) have visited us in the home to help us understand potential signs to watch out for and potential remedies. Many families can correct or minimize the impact of different behavioral, intellectual, emotional, or physical barriers before a child reaches school age.
Our faith comforted us while we were in this 'twilight zone' experience of the NICU. Not only through loved ones visiting us and the wonderful casseroles prepared. But God answered our prayers before we even prayed them. God answered the prayers of many parents with the creation of BCMH, Help Me Grow, and public investments in research.
As our State Legislature and Congress continue their budget discussions, it is easy to overlook line items that you might not know about. I encourage you to remember that kids like Ella are running around today as happy two year olds because of those budget investments.
Ella's initial diagnosis placed her at a 60% chance of some type of cognitive or physical disability. However, with the quick diagnosis, treatment, and follow-up care, her likelihood had dramatically decreased.