When Alyssa Border went into pre-term labor, Benjamin (“Benji”) was born in December 2018 at 28 weeks with Pierre Robin Sequence (PRS) and Micrognathia. PRS affects Benji’s mouth, chin, and digestive tract (ie recessed chin/cleft palate – he has jaw issues and g-tube for feedings; had cleft palate repaired). When Alyssa was ready to deliver, she had to be transferred from York Hospital to Johns Hopkins via helicopter, where Benji was delivered. He spent months in Hopkins’s NICU before being transferred to Mt. Washington Pediatrics Hospital.
Alyssa and Jim were able to bring Benji home in April of 2019. He had sleep apnea issues, which affected the couple’s nighttime routines immensely. Alyssa stayed home during the day, but they ultimately decided to both go back to work full-time in order to both be able to best provide for their family.
In addition to being weaned off of his ventilator, Benji has made incredible strides since they secured his regular in-home pediatric nurse, Jana, in July 2020. Benji will be able to “catch up” developmentally to other children his age because of the early intervention his care team has provided him in terms of physical therapy, speech therapy, and occupational therapy. He will soon be off of his g-tube once he can fully eat on his own for 6 months. Jim and Alyssa credit the consistent, reliable, and compassionate skilled nursing care that Jana provides to Benji. “We feel lucky that some day soon, Benji will be able to ‘graduate’ from pediatric home nursing,” says Jim. “Part of the reason we feel comfortable working is due to the peace-of-mind that comes with having a trusted nurse. Jana provides the consistent care a medically-complex child needs, and that care allows our family to live as normal of a life as possible.”
Jim also has a particularly unique perspective on home nursing care because in addition to being Benji’s dad, he works in home care: He is a director of a BAYADA Home Health Care office that provides skilled pediatric nursing services to other families with medically-fragile children in the Mechanicsburg area. He regularly sees the issues that many families face when home nursing isn’t readily available.
Currently, BAYADA’s PA pediatric offices must decline more than 50% of all the referrals they receive due specifically to the lack of nurses available to cover shifts that parents of medically-fragile children are desperately seeking. “There are so many times that we must tell parents that we can’t help their child get home from the NICU simply because we don’t have the nurses available,” says Jim. His office and others across PA have seen nurses being recruited to working in facilities like hospitals and nursing homes, and to give COVID vaccinations.
When nurses aren’t available to care for the skilled nursing shifts for which medically-fragile children are prescribed and authorized, then those families are forced to make difficult decisions—which can include choosing between putting their child in a life-threatening situation so they can stay at home without nursing care—or putting their child in a life-threatening situation by being in a potentially-infectious live-in facility that has available nursing care.
This issue has persisted in large part due to home care providers’ inability to recruit and retain enough nurses to meet the demand. Currently, nurses can make more in wages in other settings. Additionally, COVID has complicated this already-dire situation by the additional issues caused by virtual schooling, child care, and the ability for nurses to make a premium wage giving vaccines. Advocates are calling on the PA legislature to increase the state’s funding for pediatric shift nursing so that providers can recruit and retain more nurses. Nearly 10,000 families currently rely on this care to stay safe and healthy in their PA homes—and their ability to access this care depends on the sustainability of resources for the pediatric shift nursing program.