There’s a popular saying these days when you’re expecting—“I don’t care if it’s a boy or a girl as long as the baby’s born healthy.”
But ours wasn’t.
We had no inkling, though, until nearly two months after our daughter was born that anything was “wrong.” When the diagnosis came more than a year later, it was the most unbelievable of circumstances—my husband and I were both carriers for a genetic mutation that is found in only 1 in every 100,000 people. We had no idea that every child born to us would have a 1 in 4 chance of having Aicardi-Goutieres Syndrome, a condition so rare that there are only 400 known cases worldwide. You could say we hit the jackpot the very first time out.
But it would be months and months before we knew any of that. All we knew as Lucia underwent MRIs, emergency visits with seizures that prompted hospital stays and EEGs, as she lost her ability to feed by mouth, had various tubes implanted and surgeries to try to prevent the reflux that left her with life-threatening bouts of aspiration pneumonia, even with our private insurance, we eagerly and blearily funneled nearly $10,000 at her medical care in the first year and a half of her life.
Fortunately I had a friend with a son with special needs who quickly advised me to apply for Medicaid. The process was tedious and anything but straightforward even for a couple with three masters degrees and a Ph.D. But eventually the state and federal governments stepped in to provide us not just a respite from the enormous, unsustainable medical bills but much needed in-home nursing care.
You see, I only realized shortly after the nurse from Medicaid came, assessed and marked Lucia’s needs commensurate with institutionalized medical care that the Managed Long-Term Services and Supports program in NJ (that receives half of its funding from the state and half from the federal government) was such a lifeline. It has allowed us to keep our kid at home rather than have to give her up to a nursing home due to her complex, expensive care. I learned that when private insurance providers and plans like the one we have through one of the top private universities in the country refuse to grant in-home nursing care to children with disabilities who desperately need it, Medicaid steps into foot the bill. They pay for nurses who administer tube feeding, provide suction and oxygen, and give tens of medications a day, but also nurses who monitor blood oxygen levels and seizures all through the night so parents with special needs can sleep and work and live, too. Medicaid pays for Lucia’s nurse to go to school with her and she’s essential there because Lucia can’t hardly move her limbs. She’ll likely need help for the rest of her life with not just medications and seizure precautions and feeding pumps but with getting in and out of her wheelchair, having her teeth brushed and having her diapers changed. Thankfully, Medicaid covers lots of hidden costs that private insurance won’t, as well—feeding supplies, electronic pumps, pulse ox machines, suction machines, syringes, prescription, therapy, and specialist co-pays, even diapers for older incontinent children. That’s a small thing, but when you realize that one of your greatest hopes is that your kid lives long enough to rack up like 18 years in diaper purchases, it’s nice to know you’ll have some help with that (even if it’s not doing the dirty work).
Realistically though, even though my husband and I are both gainfully employed, we could never afford the retail value of Lucia’s comprehensive care. We work really, really hard and the irony of it is without Medicaid, one of us would surely have to quit our job to provide all the services Lucia would lose if the program were cut or worse—Lucia would end up in a nursing home. That’s because no typical daycare will take a kid with a tracheotomy, a feeding tube, or seizure risks—not for cost anyway. So Medicaid—the state and the federal government together—steps in where private companies deem life-giving services kids like mine need simply too costly or unprofitable. Medicaid makes it possible for my child to live at home, providing nurses in lieu of daycare or medical daycare for kids that are healthy enough.
Private insurance companies measure people in terms of gains and losses and when it comes to down to it, my kid’s life just isn’t worth their time. Until recently, though, I hardly thought about it that way. Up until recently, all I could feel was grateful because thanks to your tax dollars, Lucia’s life has been served and sustained, my husband and I find ourselves working in fulfilling careers and she’s cared for by a skilled nurse and learns in a special education setting and receives her medical treatment in the comfort of her own home. Medicaid reminds me that while dollars and cents duly matter, life is so much more than that. On paper, perhaps my husband and I have gotten the raw end of the deal—our child was surprisingly born with profound developmental disabilities, her condition is terminal, and there’s very little we can do about that prognosis. But in reality, with much thanks to Medicaid, all three of our lives are rich and full and so, so good. Our daughter’s smiles and giggles light up the world just like your children’s do; our family loves walks together (Lucia rolls, of course, but she seems pretty content with that!), and Lucia laughs like any three year old at funny noises and smiles when the sun’s on her face.
Lucia smiling in her new activity chair.
These days it’s not Lucia’s medical fragility that keeps me up at night writing articles like this, but the fact there her abundant quality of life, provided through Medicaid, is being threatened by this AHCA bill (I would provide a link with more information about the content of the proposed bill but it’s literally being written behind closed doors as the Republicans try to ram it through Congress within the next week). With dramatic proposed cuts to a program that serves more than 80% children, people with disabilities, and the elderly, so many people in need will be affected. But it feels like no one is listening. Now, the persistent denials of private insurance, the callous priorities of this administration, and this bill with its $834 billion dollar cuts to those who need it most cut to the heart of our desires to simply be parents, care for our child at home, work, and live.
We’ve gotten into this mentality that we’ve only got to take care of ourselves in this hostile, divided political economy, but childhood, old age, and yes, even disability, know no boundaries of race, gender, or even class. You see, we’re all in this together even when we’re made to believe we need to work against each other to achieve anything. And all I know is I live in a country that is slowly but surely chipping away at my daughter’s very humanity. She’s not worthy of the medical care that may keep her alive, the supports that may help her live her life, and even basic supports that could at least keep her in her own home as she faces such an uncertain future. So what’s next if healthcare for people with disabilities is cut? No education? No wheelchair? No personhood?
Perhaps the more poignant question is who’s next.
My daughter didn’t have the luxury of being born healthy, and it’s a harsh truth, but then again, maybe neither will yours. And we will all grow old and age and die, and as we do so many of us will become frail, disabled, and in need. Even without these cuts, many of us will find ourselves in places of medical need and financial hardship.
Where will Medicaid be when you or someone else you know needs it? Where will any of us be when our health fails us and there’s no support and grace and care?
We can go on wishing and hoping and praying that all babies are born healthy, but that’s simply not the case. And when you or someone you know are faced with that profound uncertainty, may the world not turn on you and tell you your child isn’t really worth the time or trouble or money. Let’s not dismiss the possibility of fragility that makes us all so human but rather affirm another thing that does—our ability to care for one another. Let’s preserve Medicaid assistance for people in need because it’s the right thing—the human thing to do. Without it, many people, like my daughter, my family, millions of families will needlessly suffer. Let’s not make health a precondition for humanity: my baby wasn’t born healthy, but she’s worthy of this fight.
Lucia smiling on a third birthday we had only dreamed of seeing!