Inside Marely’s hospital room, the mother massaged her baby’s feet and played with her hands. Marely’s dad Jose listened to her failing heart one last time with a stethoscope. Then, the mother took her turn.
“And I remember crying because I was like, ‘I carried this heart for nine months,’ ” Santos says. “We’ve been able to keep it alive for another six. But will we keep it alive for another day to get the transplant?”
Marely made it in time. Her mom calls her daughter’s new heart “Marely’s miracle.”
After the hospital, Marely spent another six months in transitional care before finally coming home in January. She’s now nearly 2 years old. A big reason she is able to live at home is because of Medicaid. The public health insurance program for low-income and disabled people covers the cost for medically fragile children dependent on technology. Similar care in a hospital or another facility would be far more expensive.
A study at Lurie showed that the cost for a group of children on ventilators who were delayed in returning home because they couldn’t get nursing care was about $180,000, on average, per patient while they waited.
Medicaid covers everything from Marely’s portable ventilator and feeding tube to a nurse trained in managing the breathing machine. This program is available to families who have private insurance, too, like Marely’s parents, because caring for medically fragile children at home is significant — Marely is eligible for at least $30,000 a month for nursing, for example — and private insurance often doesn’t fully cover these costs, if at all.
As the Republican-controlled U.S. Senate is set to vote on drastically slashing federal spending for Medicaid to help cover tax cuts, families, doctors and nurses worry about what could happen to children like Marely.
“There’s absolutely no way families can pay for the care that their children need to allow them to stay at home,” Knowles says. “You would have to be so immensely well off, and unfortunately most of our families aren’t.”