Bradley's Story
In November of 2009, Rowena Amematekpor and her three-year-old son Bradley were at a crossroads.
Born with both tricuspid atresia (a congenital heart defect) and pulmonary vein stenosis (a rare condition causing continual narrowing of the veins in the lungs), Bradley had spent close to a year on the transplant list at The Children’s Hospital of Philadelphia waiting for both a new heart and new lungs. He was not doing well, and the catheterizations needed to expand Bradley’s veins and keep oxygen flowing were becoming too risky. “It was scary,” says Rowena, “because what I had relied on to buy him time was not going to be an option anymore. Bradley was in very bad place.”
Rowena was seven months pregnant when she first learned of Bradley’s heart condition. Having moved to the United States from Ghana to attend graduate school, Rowena decided to put her studies on hold for a year when she found out she was pregnant. However, three weeks after Bradley’s birth she discovered that his condition was much more serious than initially thought; his lungs were affected, too, as a result of pulmonary vein stenosis (PVS). His new diagnosis meant it was not possible for him to have the surgeries initially planned to correct his heart defect, and treatment options for PVS were very limited. “The prognosis was extremely discouraging,” says Rowena. “Most kids don’t make it to their first birthday.”
Bradley immediately had surgery to try and reconstruct his veins, and also entered a trial at The Children’s Hospital of Boston utilizing chemotherapy drugs usually used for lung cancer. He also began undergoing catheterizations every six weeks to balloon his veins open. After two years, it became clear that his only long-term option might be a heart and lung transplant, despite the risks. “You really don’t have a lot to go on in making your decision,” says Rowena. “There aren’t a lot of transplants happening for kids his age.” However, in August of 2008, Bradley starting coughing up blood due to hemorrhages in his lungs, and Rowena knew a transplant was his only hope. “All along, Bradley had fought to be here and defied all of the odds,” she says. “ I wanted to go for it.” By December, Bradley was listed as highest priority on the transplant list at The Children’s Hospital of Philadelphia. Bradley and his mother waited at their home in Union, New Jersey for the call.
Eleven months passed, and Bradley’s condition worsened. “Finally, one day Bradley said to me, ‘Mommy, I am tired of being sick.’ It was the first time he had acknowledged he was sick,” Rowena says. “I looked at my little boy, not really knowing the right thing to tell him.” Rowena had her son say a prayer, in words he could understand, to feel better. The next day – the day before Thanksgiving – they got the call that a heart and lungs were available for Bradley. Rowena and her family, including her aunt, mother, and grandmother who had come over from Ghana to offer support, checked into the Philadelphia Ronald McDonald House to stay close to Bradley at all times.
A few days after his transplant surgery, Bradley faced a minor hurdle when the doctors had to operate again to reposition his new lungs. However, more bad news was to come: Bradley had come down with several infections, one of which – the adenovirus – was destroying his new lungs. “The only thing that would save him was another lung transplant,” says Rowena. She relisted Bradley on January 10, and the next day received the call for his second lung transplant in five weeks. This time, despite some setbacks, Bradley’s surgery proved successful. In June of 2010, after staying at PRMH for eight months straight, Rowena was able to take Bradley home again.
Rowena credits her stay at the House as part of the reason she was able to cope during Bradley’s ups and downs. “I don’t’ think we would have made it through this course without somewhere like this to call home for such a long time,” she says. “It is more than a home away from home. I try to imagine life without the House and I can’t. It is a place where your family can still feel like a family.”
Down the line, Bradley will need another heart and lung transplant. “One thing I remember,” says Rowena, “is that we are exchanging a disease we cannot treat for a condition we can. It is not free of bumps and surprises, but it is treatable.” Rowena is also acutely aware of the gift the organ donors’ families gave to her. “It is bittersweet to think about what those families gave up for my son to be here,” she says. “I don’t take that for granted at all.”
Today, Rowena and Bradley are taking things one day at a time, enjoying doing things they could not do before. “We are just living life. I can’t keep up with him, and that’s a good thing,” says Rowena. “At first, I was so scared to let him back into the world. I was creating a bubble in my mind to keep him in at home. It made me realize why we did it – it wasn’t to have him live in a bubble, it was to have him live.”
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The Heart of the House is our Volunteer program. The volunteers serve in many ways, helping to make the House a comfortable and supportive place for our families. The caring volunteers of the PRMH make this House a home.
