By skyforbes 
Below is the summary of an inspiring interview I conducted with a delightful young girl named Deonc and her mother Desiree. I am grateful to them for letting me use their names and moving story. The interview occurred in March of 2017, as the American Healthcare Act (ACHA) was being contemplated. The ACHA has since been struck down, but several other efforts to significantly reduce Medicaid benefits remain underway. This interview sheds light on one family dependent on Medicaid to survive and thrive.
Braided-hair social butterfly
Deonc is a charismatic nine-year-old girl. She has the kind of smile that seems to use all 42 muscles in her face. As she plays on her mom’s computer seemingly lost in her own world, she has a subtle smirk. When I ask her a question, she turns her head, eyes still glued to the computer, and responds with a grin and both eye brows raised. Two seconds later her eyes slingshot from the computer screen to the me with a polite, “I’m sorry, what did you say sir?” With impressive manners and contagious energy, Deonc is one of those kids you just want to hug.
Deonc’s mom tells me she is in 3rd grade in a public school. She loves to dance. She’s really into fashion, which goes without saying given the Deonc’s ruffled red skirt and matching bows at the base of two pristine braids in her hair. I wasn’t surprised to hear that Deonc is a social butterfly at school. “She has so many friends,” describes her mom Desiree. As Deonc busies herself with the computer, Desiree leans over and whispers, “And she loves Michael Strahan.”
Deonc and Michael Strahan have a lot in common. Michael Strahan is a Hall of Fame football player-turned TV celebrity. He’s well known for his effervescent personality and tooth-gap on the Michael and Kelly Show with Kelly Ripa. Before becoming a TV personality, he was a defensive end for his entire 15-year career with the New York Giants, which included a Super Bowl win in his last season. Although Michael Strahan is five times her size, Deonc probably has more strength than mighty Michael Strahan.
Crayola marker cap and the computer tote
Deonc was born with Jarcho-Levin Syndrome, a rare genetic disorder characterized by distinctive malformations of the bones of the spinal column and ribs. This disorder makes breathing very difficult. Infants like Deonc have short necks and fused ribs and vertebrae. The result of these malformations is that the ribs fail to develop properly causing short stature and a chest cavity that is too small to accommodate the growing lungs.
As kids with Jarcho-Levin Syndrome grow older and their lungs outgrow the chest cavity, it becomes increasingly harder to breath leading to repeated respiratory infections, like pneumonia, and potentially life-threatening complications.
To help her breathe, Deonc has a small plastic tube in her throat called a tracheostomy tube, or trach tube for short. The trach tube is about one centimeter in diameter and three centimeters in length, similar in size to the cap of a Crayola marker. The tube was surgically inserted just below Deonc’s thyroid cartilage, also known as the “Adam’s Apple.”
Connected to the trach tube is a five-foot long flexible hose. The other end of the hose is plugged into what looks like an over-the shoulder computer satchel. But instead of containing a personal laptop, the tote contains a portable breathing machine with a dozen buttons and flashing lights like something you would find in the old Star Wars movies. The breathing machine, also known as a ventilator, emits a unique din that is a blend of the sounds made by a home aquarium and a room fan with a loose mount. Deonc’s throat, trach tube, long hose, breathing machine in tote. Cute kid on the computer.
The portable ventilator pushes oxygen through the long hose, into the trach tube, and down into Deonc’s lungs. Aside from the discomfort of having a piece of plastic implanted in your throat, the feeling of being on a breathing machine is similar to sticking your head out of a car window or lifting the visor of your motorcycle helmet and inhaling mouth-wide-open while going about forty miles per hour. While it is uncomfortable, the positive pressure from the ventilator helps keep the frail air balloons that are Deonc’s lungs from collapsing on themselves.
Amidst the piece of plastic in her throat, the perpetual luggage of the breathing machine, and its ceaseless droning, Deonc is still smiling. If there was a competition of will, optimism, and grit, Deonc would plow through Michael Strahan.
Putting personal pride aside
Noticing that I was lost in admiration and astonishment as I stared at her daughter jovially typing while trached, Deonc’s mother gently said my name, “Dr. O?” so as to regain my attention.
“You know we weren’t aware of the complications Deonc would have until the end of my pregnancy,” offered Desiree. “After she was born, she was in the NICU for seven months.” The NICU is short for the Neonatal Intensive Care Unit, which is where critically ill infants are cared for in the hospital.
“Four months into the NICU stay, the hospital folks explained that we were about to exceed the $3 million lifetime cap for Deonc under my insurance and that we were running out.” When Desiree tried to get Deonc on another policy, no insurer would cover her because Deonc had a prior condition. Since the Patient Protection and Affordable Care Act (ACA) went into effect, denying a patient coverage for a prior condition became illegal. Deonc was already two years old by the time the ACA was born.
“When the hospital first said I should go on Medicaid, I was a little offended.” Desiree takes a deep breath in as if to suppress pride and exhales, “I would do whatever it takes to get the money together, but there is just no way to get that money.” The pitch of Desiree’s voice heightens and her face becomes vulnerable. “She walks, she rides a bike, she can breath, and I credit that to Medicaid.”
Medicaid is the largest health insurer in the United States. It covers nearly 70 million people including 45 million children like Deonc. Medicaid also covers millions of elderly individuals, non-elderly adults with disabilities, and non-disabled adults in poverty.
Medicaid provides Deonc with access to and payment for intermittent hospital care, comprehensive primary care, specialty care including orthopedics for her bone surgeries, otolaryngology and pulmonology for her breathing difficulties and hearing aides, gastroenterology for her feeding tube, durable medical equipment including the portable oxygen tank and breathing machine that enable her to participate in regular school rather than being locked up at home, skilled nursing that ensures she can function safely in the community and not be restricted to a nursing facility, and medications which would cost about $5,000 per month just for her breathing treatments, among other medical assistance. In other words, Medicaid keeps Deonc alive and thriving.
Desiree goes on to tell me about the rest of her lovely family including her husband, who works full-time, her 17-year-old son who plays in a band, and her 5-year-old son, who learned sign language so he can communicate with Deonc. In addition to the bone abnormalities, Jarcho-Levin Syndrome has also caused Deonc to have a hearing impairment requiring a hearing aide. Desiree works at a nearby hospital and between her income and her husband’s, their family is able to make ends meet to live in a middle-class neighborhood in Richmond, TX, a suburb of Houston.
“My husband would never let us be on food stamps,” explained Desiree. Desiree’s family income is too high to qualify for social security assistance but not enough to pay for all the healthcare Deonc needed. “We can’t qualify for food stamps and we want to work.”
Desiree pauses again, “A lot of people, and I was one of them, think [Medicaid] is just a charity program. Now my perspective has changed, because without Medicaid my child wouldn’t be alive. My whole family would be in poverty. We wouldn’t be the happy family we are. My husband and I probably wouldn’t still be married. Medicaid saved our family, literally.”
Access to Medicaid enabled Desiree and her family to live humanely. The comprehensive benefits package of Medicaid also enabled Deonc to thrive in the community rather than the institutional setting, which made her average monthly healthcare spending about 20% of what it would be if she were constrained to a nursing facility. And since Medicaid is a federal-state partnership, the federal government paid $0.61 for every $1.00 spent on Deonc’s care, which is a great bargain for Texan taxpayers.
Threat of losing everything
Our conversation turns to the looming legislation in DC. Under the proposed American Healthcare Act (ACHA), the state of Texas would be subject to a reduction in federal funding for Medicaid by over 20%. As we’ve seen in Puerto Rico, the only state or territory in the US currently under a Medicaid block grant, such cuts lead to waiting lists, limited services, and other forms of rationing care that would leave children like Deonc underserved, likely much sicker, and potentially dead.
Deonc’s family would spend down their money on healthcare bills forcing them into abject poverty. Desiree and her husband would no longer have sufficient earnings to pay taxes, which would create more tax burden for other taxpayers due increased reliance on social security insurance, and everyone in the state of Texas would be worse off.
I ask Desiree what she thinks of the ACHA and she grows quiet. Deonc notices the sudden silence, with only the ventilator’s hum to fill the void left by her mom’s voice. And for the first time, I see what Deonc’s face looks like without a smile plastered over it. She remains a beautiful little girl. But, the pent up pain of dozens of surgeries subtly show under her eyes and in her forehead as she compassionately squints and furrows, “Are you ok Mama?”
Epilogue
In preparation to publish this story, I checked in with Desiree. The ACHA and several other legislative attempts to dismantle the Medicaid program have since been struck down. Deonc continues to do well, in part due to Medicaid, but mostly due to her Strahan-like strength. Deonc is now 11 years old and thriving in middle school. Desiree notes that she as a mom of a tween is “so not ready.” Deonc still “loves loves loves Micheal Strahan like you wouldn’t believe.” She is still ventilator dependent, but still “trucking along beating the odds and enjoying life.” Importantly, Deonc is still a little fashionista.