Medically-fragile children: Parents face challenges, fear for future

parents face challenges

Parents of medically-fragile children face so many challenges throughout their lives, and 18-month-old Leena Stull’s parents fear for the future.

18-month-old Leena Stull

As medical technologies enable hundreds of thousands of individuals to live better, longer, healthier lives, they also create new challenges that the healthcare world must address. One of those is the shortage of skilled home nursing care for babies like Leena.

As the mother of a baby that has graduated from Children’s Hospital of Philadelphia’s (CHOP) NICU with home care nursing, Alexis Stull is advocating for Leena; and for the many children like her that have yet to be born.

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Born at 27 weeks, weighing less than two pounds, she was diagnosed with bronchopulmonary dysplasia. Her lungs were not fully developed at birth; and she will need special medical care and equipment for the foreseeable future.

She was immediately put on oxygen and ventilator support and placed in York Hospital’s NICU. She remained there for more than three months, awaiting transfer to CHOP.

Leena spent the next nine weeks in CHOPs NICU until she and her parents were able to get to the Progressive Care Unit (PCU). There Alexis and husband Daryl were trained to care for Leena medically for the remaining three months of her stay.

“Because they knew it would be difficult for us to find enough in-home nurses, they trained us to stay up for 24 hours straight,” Alexis remembers today. They were completely trained by mid-June, but couldnt take Leena home until mid-August when proper nursing coverage was secured for her in Chambersburg. It took nine weeks and three home health care agencies, plus CHOP’s case management team, to finally find a nurse that could care for Leena in her own home.

The challenge: Finding in-home nurses

Today Leena is thriving alongside her caring parents and their two dogs, Gabby and Meeko. But finding enough in-home nurses to cover the shifts that Leena needs remains a challenge.

“Leena is authorized for 112 hours of skilled in-home care per week, and we can’t access even close to that much,” Alexis said.

Currently, the Stulls are functioning with one available night nurse, and many of their nursing shifts aren’t covered.

“We have four nurses and no back-ups if there is a call-out, Alexis said. “On nights when [night nurse] Jess isn’t here, I will stay up to monitor Leena until 3 a.m. when I will switch with Daryl and sleep until 5:30 before it’s time for me to wake up for work. The lack of nurses puts Leena in danger; and it also affects our ability to provide for Leena as fully-functioning parents.”

Part of the reason there are not enough nurses in home care is because of the lower wages; and the nature of the job. Local hospitals can offer higher wages for RNs and LPNs. That creates a recruitment and retention gap for providers like BAYADA that can only compete for a small portion of the nursing workforce.

Additionally, medically-complex clients like Leena—who has a trach, vent, and feeding tube—require special skills and one-on-one care. Typically, such skills can allow a nurse to make more in wages at a skilled nursing facility.

However, home care providers are limited by the state’s Medicaid funding formula, which does not reimburse additional funds for highly-trained nurses that can take on more difficult, higher acuity cases.

A happy child who wants to do things her way

Alexis admits being home with a child with Leena’s special medical needs has been harder than she expected. But seeing Leena develop a unique personality since they brought her home has made it all worthwhile.

Parents face challenges

Leena is a happy baby, who wants to do things her way, Alexis said.

“She likes to be in charge, and she will tell you what she wants,” she said. “She is getting into everything; and has pulled her breathing tube out twice.”

Although Leena isn’t walking yet, she is trying to figure it out, her mother said.

Watching her grow and develop her own personality has been rewarding, Alexis said. “Just seeing her do things we thought she would never do brings us great joy.”

Leena’s medical team is working toward a goal of getting her completely off her ventalator in the near future.

“Hopefully, the trach tube can be removed in the next year,” Alexis said.

Leena will still need skilled nursing care for the foreseeable future, however. And that specialized care is often hard to come by.

The Stulls hope the time will come when parents with medically fragile newborns don’t have to struggle with getting that care because nurses aren’t available to provide. They know the answer is not simple. The need is for more highly trained nurses and better pay to attract them to the home nursing field.

“That’s what we are advocating for,” she said.

Sarah Stewart contributed to this story

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