Courtesy of Hillary Savoie

An Open Letter To My Congressman On How Trumpcare Hurts My Medically Fragile Daughter

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Dear Congressman Faso,

I call your office pretty regularly these days. I’ve requested meetings with you on the Congressman John Faso website and through your scheduler directly, but no luck yet. I also would have attended a proper town hall meeting, had you held one, as is traditional, during your recess. But you didn’t. What’s so pressing then, you might ask? I want to talk to you about the GOP plans to repeal and replace the Affordable Care Act. Why? Healthcare is the single biggest concern in my life, because of my daughter Esmé.

I’d like for you to meet Esmé. She is 6 years old and has four genetic mutations that cause a host of medical and developmental challenges. Esmé is non-verbal, tube-fed, medically fragile, and developmentally delayed. The world is a brighter and more delightful place for having Esmé in it. She is adorable, determined, funny, and clever enough to have taught herself to read. Taking care of a child like Esmé is like running a marathon at a sprinter's pace. The obligations of caring for her cannot be omitted because I don’t feel I can face them — unlike, for example, your town hall meeting.

Esmé consumes more than her fair share of healthcare. It takes a lot of resources to keep her alive and thriving — including benefits from private health insurance and New York State Medicaid. I've always felt fortunate to live in a country I believed stood behind the tenet that individuals like my daughter matter. That her education, her safety, and her well-being matter — that her life matters. I've also believed that my elected representative would never do something to fundamentally jeopardize those core beliefs.

But now I know I am wrong.

I now have very good reason to believe that the resources that quite literally keep my daughter alive are at risk in ways I never could have imagined, thanks, in part, to you.

Thursday, in the House Budget Committee meeting you voted to report Trumpcare legislation to the House, allowing it to be rushed to the floor for a vote without proper hearings or time to consult with your constituency. You voted to move legislation forward, taking steps to cause 14 million people to lose healthcare in the next year alone. You voted to move a bill forward that will give $600 billion in tax breaks to the wealthiest Americans — specifically including healthcare executives — and large corporations. These tax breaks will be funded by gutting Medicaid by $370 billion, according to the Center on Budget and Policy Priorities and reducing healthcare subsidies to average Americans. Although such cuts are often discussed as affecting the poor and the elderly, they also directly impact disabled individuals, like my daughter, who, according to the Center on Budget and Policy Priorities, receive about 40 percent of federal Medicaid funding.

I expected a healthy baby when my daughter was born, but, like many people find out the hard way, we are all just one bad driver, one sickness, or one genetic anomaly away from disability completely altering the course of our lives. My husband and I are responsible, well-educated, hard-working middle-class Americans. We have exceptional private healthcare through my husband’s work. We were always healthy, and I never expected to need anything out of the ordinary from our insurance. I certainly never expected to need Medicaid. We expected to be a two-income household that paid into a system from which we would not benefit.

Right now, that seems like a pretty good deal. I would gladly pay into such a system for the rest of my life in exchange to not know what it is like to worry about whether my child will live to adulthood. But that isn’t how our story goes.

Esmé’s medical needs did not just stop coming, day or night, because I needed a break. I learned how to suction her airway, run a feeding pump, assess her vitals, respond to seizures, administer emergency meds — all on what was rarely more than three hours of continuous sleep. My job is all too literally about keeping my child alive at home. It is one I proudly and loyally do, however, taking care of Esmé like this is a job that comes with no typical benefits — unlike the amazing healthcare benefits you receive with your job, by the way.

Esmé spent the first week of her life in the Neonatal ICU. Then three months later, Esmé went into cardiac and respiratory arrest in the ER. She had pneumonia that was brought on by her poor swallowing — a side effect of her low muscle tone — that was allowing food and reflux to collect in her lungs. At this point she had a feeding tube placed so that she could continue to be nourished without risking her lungs. Her ER visit, ambulance transportation, hospital stay, and surgery cost went well into the six figures. Since then, she's been hospitalized so many times I've lost count. Our insurance paid for her stays, but the costs kept coming.

Courtesy of Hillary Savoie

Because of her feeding tube, a large box of supplies is delivered to our house each month. This box is filled with plastic syringes, feeding tube extensions, and, every three months, a new feeding tube. These are the basic supplies to permit me to be able to feed my daughter. If I were to buy these items myself, the cost would be around $500 a month just to be able to access my child’s stomach. For some time Esmé was sustained on a prescription formula. A month’s supply for a 11-pound Esmé was around $700. Our private insurance covered these costs because New York State requires health insurance to cover prescription formula. However, that not all states require this coverage.

There are also financial losses associated with life circumstances surrounding a child like Esmé. My husband used Family Medical Leave, going without pay during Esmé’s hospitalizations. And my income? I'd planned to return to my doctorate program and work teaching in the fall when Esmé was 10 months old. At that time Esmé was vomiting around a 100 times a day, had started having weekly seizures during which time she would turn blue and shake, and she was entirely tube-fed.

When Esmé was around 1 year old, the state of New York determined her to be permanently disabled and she became eligible to receive supplemental Medicaid coverage. This coverage filled the gap between what our private insurance covered and what an individual with complex medical needs requires. This was a lifesaver for us just in co-pays: It covered those seemingly reasonable $30 copays until you have 12 specialists and visit the doctor multiple times most weeks. The copays on her medications? Currently those would be at least $150 per month, assuming she remains healthy. Since Esmé is over age 3, Medicaid also pays for diapers every month, another cost most parents of 6 year olds need not absorb. Additionally, Medicaid will cover medical equipment, things like a wheelchair, a gait-trainer, oxygen, and suction machine in the event that our private insurance didn’t offer coverage.

The impact of having a child like Esmé isn’t limited to costs of medical equipment, copays, and doctors visits. There are also financial losses associated with life circumstances surrounding a child like Esmé. My husband used Family Medical Leave, going without pay during Esmé’s hospitalizations. And my income? I'd planned to return to my doctorate program and work teaching in the fall when Esmé was 10 months old. At that time Esmé was vomiting around a 100 times a day, had started having weekly seizures during which time she would turn blue and shake, and she was entirely tube-fed — a child like this does not just go off to daycare so her mother can return to work. So I stopped working, and started caring for Esmé full time.

Taking care of a child like mine is not the same as being a stay-at-home mom. It is being a doctor, a nurse, a physical therapist, an EMT, a teacher, and more 24 hours a day. Esmé’s grandparents, who are local, loving, and involved, were afraid to take care of her alone for years: They were afraid she might die on their watch, with good reason. My mother and step father had to call 911 the first evening they watched her, because Esmé had turned blue.

Esmé’s medical needs did not just stop coming, day or night, because I needed a break. I learned how to suction her airway, run a feeding pump, assess her vitals, respond to seizures, administer emergency meds — all on what was rarely more than three hours of continuous sleep. My job is all too literally about keeping my child alive at home. It is one I proudly and loyally do, however, taking care of Esmé like this is a job that comes with no typical benefits — unlike the amazing healthcare benefits you receive with your job, by the way.

Esmé also qualifies for in-home skilled nursing care through Medicaid. The idea behind offering this kind of service to children with complex medical needs is that it is better for the child and the family, and, amazingly, less expensive, to help support a medically complex child in her home than to have a child in a nursing home. Although we could have had night nurses come in to help care for Esmé sooner, at first we didn’t like the idea of having someone in our home overnight. However, at that point I was so exhausted that I couldn’t focus the way Esmé needed me to and I was, reasonably, afraid I'd sleep through one of her seizures and find her not breathing in her crib in the morning. So, eventually, we took the help. A nurse also came during the day for about 12 hours a week for the three months it took me to complete my dissertation.

Having nurses in our home has helped Esmé’s general health improve. She is able to stay home with nursing support through illnesses that would otherwise have meant lengthy hospitalizations — one such hospitalization, we well know, can cost hundreds of thousands of dollars. Before she began consistent overnight nursing care, Esmé was often in and out of the hospital a half dozen times a year. The cost of having these nursing hours a year is around $90,000 — a savings whether compared to the cost of multiple hospital stays or the cost of her living in a nursing home.

Trumpcare’s gutting of Medicaid puts Esmé's services, like nursing, on the chopping block. And it will force families like mine to have to make impossible decisions about our children's care.

Trumpcare’s gutting of Medicaid puts Esmé's services, like nursing, on the chopping block. And it will force families like mine to have to make impossible decisions about our children's care. It also puts protections for pre-existing conditions at risk in the event that there is a gap in coverage. It also reduces the healthcare subsidies for average Americans. It also repeals the employer mandate to supply insurance. So not only does it threaten the additional help Esmé receives through Medicaid because of her disability, but it also threatens our ability to maintain, afford, and access private insurance in the event of unforeseen or unavoidable employment changes.

And, Congressman Faso, with your vote in the House Budget Committee, you stated your opinion that this was "good enough for my daughter" and for others like her. Your vote spoke for you as you weighed the health and well-being of children like my daughter against tax breaks to multi-millionaires and corporations.

They won, and my daughter lost.

Life has been unreasonably and unrelentingly difficult for Esmé… that certainly isn’t your fault. That is a roll of the dice. She could have been anyone, anyone's child, anyone's grandchild... yours, even. I watched the House Budget Committee meeting because I wanted to hear your voice as you voted yes. And I want you to know that you had a chance to use your vote to state your intention to help support children like mine, families like mine. Instead you used the power of your vote to show that you have no problem with making my child's life harder than necessary, with making her health more precarious than necessary.

Children like Esmé do not survive in developing countries. The choices ahead of you may threaten their ability to survive in 21 century in America. The choice ahead of you will be made between benefiting the most fragile and vulnerable among us, or the wealthiest among us. I can only hope that between your committee vote and the vote on the House floor, you'll think of my child’s face and ask yourself what you want your legacy to be. What's important here?

Courtesy of Hillary Savoie

You'll need to sleep at night with your decision. Esmé, and individuals like her, will spend their lives struggling to do the same.