By Madeleine Neal
When Sarah and Travis Turnbull were expecting their second child 10 years ago, everything seemed normal. In fact, when their baby arrived, everything seemed even better.
“I was quite excited,” Travis Turnbull said. “My little girl was quite long and had big feet — I just thought, ‘This is my basketball star.’”
But one month later, the Turnbulls discovered something that changed their lives forever. Their daughter, Stella, had Type I Spinal Muscular Atrophy — a neuromuscular disorder that leads to muscle wasting and impairs a person’s mobility.
“When she was diagnosed, we were basically told she would live weeks or months, because they had never seen anybody be so severe,” Sarah Turnbull said. “So we were basically told to take her home and love her, there was nothing we could do.”
After receiving Stella’s diagnosis, her parents, who describe themselves as stubborn, decided to look into possible treatments.
“Before we knew it, we were working with the University of Iowa and our house was filling with equipment,” Sarah Turnbull said.
Stella’s parents currently receive 10 hours of in-home nursing care Sunday through Saturday through Medicaid; their family nurse, Shirley Goemaat, travels with now 10-year-old Stella, helps the family with Stella’s therapies, and gets Stella going in the morning before school while the parents care for their other two children.
“There was a promise made to the American people to lower health-care costs and to make sure that everyone has health care,” Goemaat said. “But if we start messing with Medicaid, it’s going to be not just be patients or families like Stella’s but even me.”
Today Stella is on a ventilator 24/7, has a feeding tube, uses cough assist, and tons of other equipment for various therapies.
“First of all, I think it’s important to mention that there is a huge stigma with Medicaid, anyone that’s on Medicaid, I think the average person seems to think that if you are on Medicaid, it means that you’re trying to mooch off the system — you have no initiative,” she said. “And I think there’s a really poor picture painted of those who are on Medicaid, but what people don’t realize is that a large population really needs Medicaid, and yes, there are always people that are going to work the system, but in our case, you know, we had it all figured out.”
Sarah and Travis Turnbull are both college-educated, had good jobs, had primary insurance, and then, they said, the unexpected happened.
“Nobody plans on having a child that has the complexities that our daughter has,” Sarah Turnbull said. “And so when we first started on this path, we saw escalating bills piling up on our insurance, and even with good insurance, there was still a lot out-of-pocket for all the various trips for appointments, for ER visits.”
For Sarah Turnbull, their in-home nursing services help keep her mental health in check.
“[Without in-home nursing], I would have to go to school with her, I’d have to basically eat, sleep, and breathe medical care 24/7, and it’s not that I wouldn’t do that, but it’s just how can you ever have any resemblance of normal, how would I ever be able to spend time with my two other children who need me,” she said. “Our lives will always be crazy, but having nursing care through Medicaid is absolutely essential for us to live some sort of a normal life.”
She also worries that, without these Medicaid services, some children similar to Stella might be institutionalized.
“If Medicaid keeps getting cut, it’s going to play a huge effect on our family. I am thankful that we do have primary insurance — I really feel for the people that only have Medicaid, I would be even more fearful,” she said. “I feel so much that some families are going to be forced to go back to the times we institutionalized kids. Some families, if there are drastic cuts, there is no way that they are going to be able to make it on their own financially if they don’t have those extra supports to keep them going.”