Two-year-old Adalynn Landrum lies on a blanket on the floor of her living room. She watches cartoons on a large flat screen television screen hung above a row of stuffed animals placed on a blanket next to her on the floor. Her small face is partially covered by an oxygen feeding cup with a tube connected to a medical cart stationed behind her head. The cart holds an array of devices.
Adalynn depends upon a home respirator, a cough assist machine, an oxygen tube, a pulse oximeter, and a portable feeding pump. Every few minutes her father, Robert Landrum, 38, lowers a suction tube into her mouth to pull away the excess liquid out of her throat.
When Adalynn first came home from the hospital to her family’s century-old country home in Jacksonville, she was an apparently healthy baby, but after a few months, her mother, Kelly Hawkins, 38, noticed Adalynn’s legs weren’t fully moving.
“By three months she still wasn’t holding her head up on her own,” says Hawkins. “[I] started trying to fight with the doctors to find out what was wrong.”
Adalynn was drooling a lot, breathing fast, and unable to bottle feed. She was diagnosed with a degenerative genetic disease called Spinal Muscle Atrophy. The disease interrupts messaging to the muscles; slowly, they deteriorate. Without any intervention, it is fatal for most babies within their first year.
Adalynn is surviving on life support and has lost most motor movement including the ability to breathe on her own. An acute infection, lung disease or pneumonia could end her life.
“This disease can throw sucker punches,” says her mother.
But her condition is also reversing course. In December, she began a new, first-of-its kind medicine called Spinraza. It’s been helping her regain movement she had developed and then lost. Adalynn’s health is both precarious and improving, and because she was born after passage of the Affordable Care Act, her family has avoided a difficult decision.
In the past, her family would have had to choose either life support or hospice. Now Adalynn gets Medicaid support for both life-saving treatment at Arkansas Children’s Hospital and home-based care through a non-profit called Arkansas Hospice. The concurrent care is a federal mandate through the health law.
Adalynn’s hospice nurse, Wendy Rice, sits next to Adalynn, reviewing how she’s fared over the course of the week. Because it’s summer break, Adalynn’s teen brothers, 11 and 16, play video games in the room next door. Her family’s 10 cats and two indoor dogs meander around or hide under furniture. The animals keep their distance from the little girl and her medical tubes spread out on a blanket.
Adalynn stopped being able to breathe on her own at six months. She was put on a respirator, along with the other life support machines, placed in the hospice care program, and sent home with her parents.
That’s when Rice started going to the house every day to help the family learn how to care for her in their living room.
“When we first came home, I don’t know what we would have done without hospice. We probably would have gone back to the hospital and stayed there for a couple times,” says Landrum.
At times Adalynn's parents have called Rice in the middle of the night during an emergency, or asked her to pick up prescriptions on a day they weren’t able to get them, and she has coordinated between Adalynn’s other providers. Hawkins stopped working to care full time for Adalynn, who needs to be fed every four hours and must be constantly supervised, and her father, who wakes up throughout the night to feed Adalynn, works at Chili’s Restaurant during the day.
“Some days it's tense. Some days she's having extra secretions and you're worried about her choking. Some days she's really gassy and you're worrying about reflux. There's some days where it's just, you can't leave her side long enough to go to the bathroom.— and some days everything’s fine,” says her mother.
They say Rice’s help keeps them from overreacting and taking Adalynn to the hospital where she is at risk of exposure to germs.
“Our goal is to keep her free of infection if we can. To keep her comfortable. And comfort in her case means that she doesn’t have to work hard to breathe, that she breathes easily, that she’s relaxed, happy, and keeping her out of the hospital is a huge part of that,” says Rice.
Through hospice care, the family is given a social worker, a pre-bereavement specialist, and a chaplain, all funded by Medicaid.
They say they have leaned heavily on the hospice workers for support.
“It’s emotionally devastating; I mean, it’s gotten easier to deal with I guess. I don’t cry as much anymore. I just focus on taking care of her and keeping her healthy,” her father says.
Rice says the program prepares families, including siblings, for the possibility of death. Staff also guide them on maximizing the potential of their time with a loved one.
They’ve talked about planning final arrangements, and the pre-bereavement specialist has counseled the kids. Hawkins says she relied on her youngest son, Noah, heavily one day when Adalynn “coded,” turned blue from lack of oxygen, and had to be taken to the emergency room. In the heat of the moment she yelled at Noah to control one of their energetic dogs and get his father on the phone. She says afterwards she worried about whether he might be traumatized, and had the pre-bereavement specialist, Jeana Jucha, talk with him about his experience.
Despite her prognosis, Adalynn’s parents hope modern science will someday cure their daughter.
“She might not ever be able to walk, but you don’t ever know,” says her father.
As long as she’s still sick, one of their biggest fears is losing this outside support that allows them to keep their daughter at home and that she would be institutionalized.
Under the Affordable Care Act, Arkansas is mandated to offer concurrent care to children as long as it opts to offer palliative care through Medicaid.
Rice says she worries that if that were changed families would go back to a choice between between life-prolonging treatment or in-home hospice care.
“As you can imagine, not a lot of families were willing to give up everything to have the support that hospice offer[s].”
According to the National Hospice and Palliative Care Organization, the failed Senate healthcare bill did not dismantle the concurrent care mandate. It’s unclear where Republican efforts to repeal, replace or rewrite the Affordable Care Act will head next.
The Arkansas Department of Human Services says 40 kids in the state received
concurrent hospice and life support so far in 2017.
This story is produced by Arkansas Public Media, a statewide journalism collaboration among public media organizations. Arkansas Public Media reporting is funded in part through a grant from the Corporation for Public Broadcasting, with the support of partner stations KUAR, KUAF, KASU and KTXK and from members of the public. You can learn more and support Arkansas Public Media’s reporting at arkansaspublicmedia.org. Arkansas Public Media is Natural State news with context.
* A previous version of this story incorrectly spelled the name of the bereavement specialist.