A happy and healthy childhood, it seemed, was not in the cards for Dwayne.
Born with chronic kidney disease, Dwayne spent the first three-and-a-half years of his life waiting with his healthier twin sister, Christi, to be adopted.
Last year, officials in Florida were beginning to wonder if anyone could provide an adequate “forever home” for the twins. They had begun to fear the worst for Dwayne who, despite his young age and desperate condition, was languishing on the state’s kidney transplant wait list.
But today, thanks to a pair of loving adoptive parents in Pennsylvania and to two committed alumni of the Robert Wood Johnson Foundation (RWJF) Executive Nurse Fellows program, this story has a happy ending.
The tale begins more than four years ago, when a woman in Florida gave birth prematurely to twins, a boy and a girl. She gave the twins their names, but that is all she could give them because of the struggles she faced in her own life.
Dwayne suffered from a host of medical problems and experienced kidney failure at birth. He went on dialysis shortly thereafter and was placed in a medically skilled foster family when he was two months old. Christi joined him soon after, and the twins spent the next three-and-a-half-years waiting to be found by permanent parents.
But finding adoptive parents who could manage Dwayne’s complex medical care and home peritoneal dialysis was like searching for the proverbial needle in a haystack.
One woman who expressed interest in adopting the children was older and had too many other dependents. Another potential “forever family” could not meet the needs of their autistic son as well as those of the twins.
Still another pre-adoptive family took Christi for three months and was preparing to take in Dwayne as well. But they had a change of heart on the day Dwayne’s medical supplies were delivered to their home. When a truck arrived with dozens of bags of dialysate and a mountain of supplies needed for Dwayne’s care, they changed their minds.
Christi was sent back to the foster home still caring for Dwayne, and both were hit with another bit of bad news: Their foster father was facing serious medical problems, increasing the urgency of the search for an adoptive family.
With no prospects, the situation for Dwayne and his sister was growing desperate. Almost no one in the country, it was beginning to seem, had the unique training and ability to care for a child on peritoneal dialysis.
“His situation was becoming even more complicated,” said Mary Hooshmand, R.N., Ph.D., an alumnus of the Executive Nurse Fellows program (2004 cohort) who had been involved with Dwayne’s case since he was born. “It was really imperative to find him the right ‘forever family,’ and to make sure it happened quickly.”
Hooshmand, a nursing director in Southeast Florida for Children’s Medical Services, could not believe her ears when she heard about a couple in Pennsylvania who had expressed interest in Dwayne. It was, it seemed, a match made in heaven.
The adoptive mother, Jeannine Winsness, R.N., M.S.N., C.R.N.P., had made caring for children with special needs her life’s work. A pediatric nurse practitioner and an organ transplant coordinator with the Gift of Life Donor Program in Philadelphia, she had fostered a dozen special-needs children. She had also founded a small 20-bed facility in Newark, Del., to care for children with chronic and terminal conditions. The organization, Exceptional Care for Children, continues to thrive.
In 2009, Winsness and her husband, Don Quire, fostered an infant with renal failure who was on home peritoneal dialysis. The baby was diagnosed with liver cancer soon after they took him in and died before his first birthday. They were devastated.
A few months later, Winsness and Quire were browsing online sites featuring medical foster children looking for adoptive homes. They identified two children—one in Florida and one in Utah—and called the numbers listed.
When the woman on the other end of the phone in Florida heard about their experience with peritoneal dialysis, she exclaimed: “Have I got the kids for you!”
“Kids?” Winsness and Quire responded.
“Yes, twins!” the woman said.
“Twins?” Winsness and Quire said again in disbelief.
“Yes. They are 3 years old, and the boy is on dialysis and needs a kidney transplant.”
Only a few weeks later, Winsness and Quire were selected as potential adoptive parents. They bought a new van and drove to Florida to pick up their children.
“We really felt like this was meant to be,” Winsness says. “We felt like God really had a hand in making all of this come together. It is a perfect match.”
But while the new family was beginning to come together, logistical and administrative complications began to emerge.
When Winsness and her husband arrived in Florida, they discovered that because of complicated inter-state adoption laws, Dwayne was not allowed to seamlessly transfer his Medicaid coverage from Florida to Pennsylvania. And because of his fragile medical condition, he could not go without insurance for even one day.
Forced to leave Florida with Christi but without Dwayne, Winsness and her husband were distraught but determined to find a way to reunite the children and bring Dwayne, too, into their family. They drove back to Pennsylvania, installed a video conference system on their computer to keep in touch with Dwayne, and continued to lobby to adopt him.
Meanwhile, Dwayne’s health had taken a turn for the worse. He was still waiting for a kidney transplant in Florida, and his foster parents were planning to leave for a month-long trip to Europe. If he couldn’t make the move to Pennsylvania before his foster parents left, he would have to be hospitalized. This would have amounted to a short-term prison sentence because he would have had to be confined to a crib the entire time.
Executive Nurse Fellows Alum Taps into ‘Very Powerful’ RWJF Network
Sensing the urgency of the problem, Hooshmand got on the case—and on the phone.
One of the first people she called was Cheri Rinehart, R.N., B.S.N., N.H.A., a fellow alumnus of the Executive Nurse Fellows program (2004 cohort) and president and CEO of the Pennsylvania Association of Community Health Centers, a state primary care association that serves underserved areas of the state. Rinehart is also the current chair of the Pennsylvania Organ and Tissue Committee.
“The RWJF network is very powerful,” Hooshmand says, adding: “Without giving her any details, Cheri agreed to allow me to pass her name to our team, and that started the ball rolling.”
Rinehart began dialing officials in the Pennsylvania state legislative and executive branches, while Hooshmand focused on Florida, making calls and arranging interagency meetings between advocacy groups and the government.
Without realizing it, Hooshmand and Rinehart were heeding the call of a report issued last year by the Institute of Medicine that urges nurses to take the initiative in improving health care, whether by making “courageous decisions” to find solutions to pressing problems or by taking on more formal leadership roles as entrepreneurs or on boards or panels to influence the redesign of the nation’s health care system.
One program highlighted in the report—called The Future of Nursing: Leading Health, Advancing Change—is the RWJF Executive Nurse Fellows program, which was praised for its work to create a network of nurses that can be—and is, as Dwayne’s story illustrates—used to improve patient care.
“It was true RWJF-Executive Nurse Fellows networking at its best!” Hooshmand reflected. Added Rinehart: “It is an incredible network of people who can make a difference.”
By October, the determined team of advocates had figured out a way to ensure that Dwayne’s health care would be covered throughout the entire adoption process, and Winsness and her husband were able to take their son home. Both twins are now covered under Pennsylvania’s Medicaid program.
Hooshmand, meanwhile, was recently recognized by the University of Miami School of Nursing and Health Studies with the 2010 Alumnus of Distinction Award for her leadership and work on behalf of Children with Special Health Care Needs in Southeast Florida.
But the best news belongs to Dwayne. After a rocky and uncertain start in life and long years of struggle, he has been reunited with his twin sister and has a mother and father to call his own. And the good news doesn’t end there. In January, Dwayne got a late Christmas present: a new kidney. After some initial complications, he’s now doing well. And this spring, the adoption papers for both Dwayne and his sister went through.
At long last, thanks to Winsness and her husband and to the Robert Wood Johnson Foundation Executive Nurse Fellows alumni network, this story got its happy ending—and Dwayne and his sister got the bright new beginning they so richly deserved.
While the need to address disparities in care is well known, few strategies for reducing disparities have been studied systematically.
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