When you look at 14-year-old Jamie Chilese, it’s hard to believe that less than two years ago, she was so sick. Today, this healthy 8th grade girl loves to spend every spare minute outside; she swims, she hunts and goes fishing whenever she can. She’s also looking forward to starting high school in the fall. But if not for her strength and tenacity, the support of her family, and the skilled medical team at St. Louis Children’s Hospital, Jamie’s story might have had a different ending.
Jamie was born with Ebstein’s Anomaly-- a congenital defect involving the tricuspid valve of the heart. “When she was born, her doctor detected a heart murmur and made the diagnosis,” says her mom, Stacey Chilese. “At the time, there was no need to take immediate action—we just needed to stay on top of her health.” Eventually, this condition can make the heart work less efficiently, so it is important to carefully monitor a patient for shortness of breath or other symptoms of heart problems.”
“When Jamie was twelve years old, she had to run the mile in P.E. class, and she told me she had a hard time finishing—she was struggling to catch her breath. After some tests, they discovered that Jamie’s heart was enlarging so we scheduled a surgery to repair her heart valve.”
Jamie had surgery on June 19th, 2009. “Everything went well. She came out of surgery and we all breathed a big sigh of relief,” says Stacey. But within hours, Jamie experienced complications and became gravely ill.
“Initially, Jamie was put on ECMO (Extracorporeal Membrane Oxygenation) to provide cardiac and respiratory support,” says St. Louis Children’s Hospital Transplant team nurse practitioner Kathleen Hurley. “This is not a good option for long term support, so Jamie eventually ended up on two mechanical assist devices.”
“The medical teams moved heaven and earth to save Jamie,” says Stacey. “At one point they had to take her over to Barnes-Jewish Hospital because the doctors decided she needed a device that was not typically used at Children’s,” says Stacey. “It was a very tenuous process that required hallways to be shut down, a medical transport team and extra security guards.”
Jamie was placed on the transplant list on July 13 and continued to grow more gravely ill as she waited for her new heart. She was sedated for a few weeks, and at one point even required kidney dialysis.
”She was slowly brought out of sedation but was still completely bedridden and tethered to two external heart devices,” says Stacey. “Our child life specialist—Becki Moss—was wonderful. She was so creative and did whatever she could to distract and engage Jamie during this difficult time. Jamie loves to cook so they would literally cook in bed. They went through cookbooks together, and Becki would bring the ingredients right into her bed—they baked cookies and pizza. They also made ’puppy chow.’ The CICU nurses would also have ‘spa days’ for Jamie where they would wash and style her hair and Becki would paint her nails.”
On August 22, Jamie got her new heart. “She immediately started to look and feel better. However, because she had been bedridden for close to two months, she had to work with a physical therapist to regain her strength before she could be released.”
On September 18th, Jamie went home. “St. Louis Children’s Hospital is an incredible place—they feel like family to us,” says Stacey. “In fact, Jamie misses seeing everyone—and now actually looks forward to her checkups. Last summer we even had a few of our nurses come to a barbecue at our home celebrating the one year anniversary of her transplant. I can hardly believe where she was a year and a half ago and where she is today—it is amazing. She’s looking forward to Camp Rhythm this summer and headed off to high school in the fall.”
“Of course, none of this would have been possible without the incredible gift we received from Jamie’s donor and her family,” says Stacey. “We are so grateful to them –and to everyone at St. Louis Children’s Hospital. They saved our daughter’s life.”
