For Pediatric Patient, Family is the Best Medicine
When six-year-old intestinal transplant patient, ‘Ray Ray,’ needed a new home, his nurse knew the perfect parents to call.
A visit by six-year-old Raymond Leedy to Mount Sinai is a looked-forward-to event. Even beyond the nurses’ and doctors’ pride at “Ray Ray” doing so well, he’s known for being an affectionate, lovable kid. He gives high fives and hugs whenever he comes in, and always has a big smile on his face. What makes his positivity all the more poignant is that, for a six-year-old kid, Raymond has already had more than a lifetime’s worth of challenges. It’s a continual reminder for everyone that it could easily have turned out differently.
A sick baby boy, abandoned at birth
Raymond’s story begins in September 2006 at the University of Medicine and Dentistry of New Jersey, where he was born to a mother with drug problems, two months premature. Weighing a mere two pounds, Raymond was found to have necrotizing entercolitis (intestinal failure) almost immediately. Raymond’s mother abandaned him shortly after giving birth. It was the nurses and doctors who would become Raymond’s parents for his first two years of life.
His case file from there tells the story of an incredibly sick baby boy. Weeks after being born, Raymond underwent surgery to remove most of his intestines, a procedure that involved inserting a central line so that nutrients could be administered directly to his blood stream. This intervention came with high costs, however; central lines are prone to infection and delivering high concentrations of nutrients directly to a child’s bloodstream can often cause liver damage. Raymond encountered both.
In June 2008, however, things began looking up. Under the care of Kishore Iyer, MD, intestinal surgical director at the Recanati/Miller Transplanation Institute at Mount Sinai, Raymond received an intestinal transplant. Finally stabilized, he was released to a foster family the following fall. Soon after, he was placed with a second. Although it was a positive environment for a special needs kid, given his foster mom’s age and the fact that she was already looking after multiple children, there was no guaranteeing the length of his stay.
A nurse goes the extra mile
The first time Christine Chamberlain met Raymond was in 2008, shortly after he left Mount Sinai to live with his first foster family. As Christine tells it, he endeared himself immediately. “He was just a sweet, lovable kid,” she says. As she continued to watch him grow, that easy-going spirit – in spite of his difficult circumstances – continued to impress. “He walks into the office and hugs everyone and says hello to everyone,” she says, describing a typical visit. “It’s infectious. You see him and just want to hug him.”
But there were other reasons Christine felt compelled to take a personal interest in his case. As a nurse, Christine knew that Raymond would have the best long-term prognosis with parents who could look after his developmental and medical needs. At the same time, closer to home, Christine thought of her father, who himself was raised by good foster parents and the difference it made for him. With 40,000 kids already in foster homes in the Tristate region though, Christine also recognized the odds. Finding a home for any foster kid is hard. Who could take care of – and love – such a special needs child?
Fortunately for Raymond, Christine had another patient, Sierra. Sierra was transplanted at a very young age (following a liver and intestinal transplant) and was also adopted by a family in central New Jersey. Since then, Christine watched as Sierra grew from a quiet little girl into a “sweet and polite” young lady. It reflected good parenting, Christine thought. She knew it was a long shot, and wondered if it was even right to ask. But Sierra’s parents had adopted kids with special medical needs before; could they do it again?
An act of kindness becomes a calling
Raymond wouldn’t be the second – or even the third child– that Patty and Chip Leedy adopted. The first time they’d opened their home to a child was more than a decade earlier, shortly after getting married. Patty was working at Children’s Specialized Hospital in Mountainside, New Jersey, and expecting her first child. It was there that she met Andy, a patient in need of a home. Having been adopted herself, Patty’s heart went out to the boy. After talking it over with Chip, they decided to take Andy in – one month after giving birth to her daughter Shannon. Shortly after giving birth to her second child, Casey, Patty met Trevor, a pediatric liver transplant recipient also in need of a family. They took him as well, bringing their burgeoning family to four. In the following years, they would adopt two more: Dylan, Trevor’s half brother, and Sierra, Christine’s other patient.
It was about eight years after adopting Sierra that Patty got Christine’s call. She was standing in her kitchen and the kids were off at school. “I was a little anxious,” Christine confesses, thinking back to that conversation. “It’s not an easy phone call to make.”
Patty told Christine that she’d have to talk it over with Chip and the kids; Raymond would be their seventh child. With the oldest two off at college, though, they had the space to provide. Plus, by now, what began as an act of kindness had become something of a calling. “You hate to see kids who don’t have somebody,” Patty explains.
A few days later, Patty called back to say they’d love to meet Raymond. It took almost a year, but Patty, Chip, Dylan, and Sierra went to Ray’s foster family’s home finally meet. Next, Raymond’s foster family came to visit the Leedys. Then there were some overnights before Raymond came to live with the Leedys full time.
Raymond moved into the Leedy home in August, 2012 (he’s pictured above with the Leedy Clan on the day of his legal adoption). “When he first came, I thought ‘Oh, he’s going to have some trouble sleeping.’ But he went right up to his room,” Patty recalls. They’d put up fresh sheetrock in Trevor’s old room and filled it with toys. They also hung a picture of Raymond’s former foster family so that he’d feel more connected and at home. “Periodically he’ll point it to and declare, ‘my family!’” Patty says. “Then he’ll point to his new brothers and sisters and declare again, ‘my family!’”
“He likes it here,” Patty says, 10 months after first taking Raymond in. “From the first day he was here he was calling us ‘mom’ and ‘dad.’ … He’s seldom upset, unless he’s not feeling good. He’s easy going. The way his life started out, he had to learn to adapt to change.” The affection in Patty’s voice is evident.
Last fall, Raymond was enrolled in Montgomery Township schools, where a devoted team of teachers is helping with his education and development. Patty is also actively involved, contributing frequently to PTA efforts. As for Shannon, Casey, Trevor, Dylan, and Sierra, they’ve taken in Raymond as one of their own.
“[Sierra] is very affectionate with him,” Christine says, reflecting on seeing them in clinic. “She holds his hand. … You can tell she really likes having him around, too.”
A happy ending and new beginning
When asked what would have happened if she hadn’t connected Raymond with the Leedys, Christine pauses. “He would have wound up in foster care,” she says. In the foster system, he likely would have gone from home to home. Upon turning 18, he probably wouldn’t have been able to live independently, since a difficult childhood is especially handicapping for a child with developmental and medical needs. “A kid like Raymond is going to do really well with parents like Patty and Chip because they teach him; he goes to school; they’re interactive; and there are other children there with him,” Christine says.
As for Patty, when asked what it means to know the difference she and Chip can make for Raymond, she answers simply: “It’s just nice to be able to help out.” She quickly changes the focus to Raymond: “I think he’ll do well so long as he can stay healthy, so long as his medications keep doing what they’re doing, and he has a good support system.”
Particularly on that last point, by all indications he does. Six years after being left in the hospital at birth, Raymond is receiving long-term care from his Mount Sinai team and settling into a good home where he is beginning to thrive. It bears out the old adage: sometimes family is the best medicine.