When Florida nurse Paula Dorhout, RN, MSN, first met an infant named Dwayne, she had no idea this little boy would prove to be one of the most challenging — and miraculous — patients she had ever worked with.
Dwayne and his twin sister, Christi, were born prematurely in 2007, and their mother was not able to keep them because of struggles in her own life. Christi was healthy, but Dwayne suffered from a host of medical problems, including chronic kidney disease. The first miracle occurred when medically skilled foster parents agreed to take in Dwayne and his sister. Dorhout, nursing director for Children’s Medical Services in Palm Beach County, and the medical foster care team, talked daily with the foster parents to support them as they managed extensive medications, injections, treatments and doctor appointments. But then a new challenge emerged. Dwayne’s kidneys were failing and he required peritoneal dialysis to survive.Mary Hooshmand, RN
“It is rare for kids to go on peritoneal dialysis, and they were having trouble getting insurance coverage for all of the supplies Dwayne needed because the system is set up for adults,” Dorhout said. “I discussed this with my supervisors, and they in turn talked to the insurance provider. In the end, changes were made on a state level and Dwayne got what he needed without disruption in his care.”
After about three years with the foster family, Dorhout received some disturbing news that ratcheted up the urgency to find a permanent home for the children. The foster father was facing serious medical problems of his own, and the couple could not continue to care for the twins much longer.
Finding a family that could manage Dwayne’s complex medical care had already proved difficult. One couple had taken in Christi for three months and was preparing for Dwayne’s arrival, but they changed their mind the day Dwayne’s plethora of medical supplies arrived at their home.
It seemed almost too good to be true when in May 2010 a Pennsylvania pediatric nurse practitioner and her husband expressed interest in adopting the twins. The potential mother, Jeannine Winsness, RN, MSN, CRNP, an organ transplant coordinator, had previously fostered an infant with renal failure who required peritoneal dialysis.
Dorhout knew this was a perfect match, but like a mirage in the desert, this dream scenario proved to be elusive because of interstate adoption insurance complications. Dwayne could not afford to go without Medicaid coverage for even one day, and his foster parents were scheduled to leave for a month-long trip overseas. If the children were not placed in their adoptive home before that date, Dwayne would have to spend four weeks in a hospital to receive proper care.
Dorhout alerted her supervisor, Mary Hooshmand, RN, PhD, regional nursing director for CMS in Southeast Florida, about the urgency of the situation, and this conversation set in motion a series of critical interactions. Hooshmand, an alumna of the Robert Wood Johnson Foundation Executive Nurse Fellows Program, had made a nurse contact from Pennsylvania during the program who she believed could offer critical guidance to the potential parents.
Hooshmand contacted the nurse, who reached out to key legislators and administrative officials to see if they could expedite the process. Meanwhile, Hooshmand rallied leaders from several community agencies in Florida to make Dwayne’s case a high priority.
“When I first heard that there were problems, my response was that this just has to happen,” Hooshmand said. “I had to visualize a happy ending as we worked through all of the challenges that we faced.”
In October 2010, just days before the foster parents were scheduled to leave for their trip, Dwayne was reunited with his sister and moved in with his adoptive parents. After Dwayne had been with his new family for three months, he received the exciting news that a kidney transplant match had been found. Although he still faces health challenges, he is no longer on dialysis and has more energy than ever, said Winsness.
“Our goal was to help Dwayne find a permanent home,” Dorhout said. “The fact that he is in a home with a mom and dad, a good quality of life and a future means more than anything else. That’s why we work in Children’s Medical Services.” •