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Doctors at Children’s Hospital of Pittsburgh of UPMC have been treating David Hart from the day he was born with multiple complex congenital heart defects, including a hole in his heart.
Due to the severity of his congenital heart disease (CHD), David underwent open-heart surgery almost immediately after birth. In the years that followed, David spent most of his childhood in and out of Children’s Hospital’s Oakland campus for countless medical procedures, including placing a defibrillator on his heart and pulmonary valve replacement surgery to address an arrhythmia (irregular heartbeat).
Now 32 years later, David is still receiving that same level of comprehensive cardiac care at Children’s through the Adult Congenital Heart Disease (ACHD) Center.
Thanks to advances in medical and surgical care, most patients born with serious congenital heart defects are living more productive lives, surviving long into adulthood. David is part of a growing population of nearly 2 million CHD patients in the United States who have had life saving heart surgery as newborns and children, and now require a coordinated approach to their care over their lifetime.
“Few heart defects are permanently ‘cured’ through a single childhood surgery. A person often requires multiple interventions or surgeries over his or her lifetime,” said Stephen Cook, MD, director of the ACHD Center. “Our goal is to see that our patients remain healthy throughout their lifespan and receive appropriate medical care. By making this transition easier, we ensure that our patients have access to outstanding care and education throughout their entire lives.”
Born and raised in Pittsburgh, David was followed by physicians at Children’s until he turned 18; then he transitioned to an adult cardiologist. In 2011, David received a letter from Children’s introducing Dr. Cook as the director of this new program for ACHD patients. He immediately called to schedule an appointment.
The notion of being an adult cared for in a pediatric hospital may seem surprising to some, but for David, attending the ACHD Center at Children’s Lawrenceville campus is one of the best decisions he has ever made.
“Since meeting Dr. Cook, I feel my care is being looked at over the full spectrum of my life. The ACHD team is well aware of my medical history, which allows them to address any issues I’m facing quickly and accurately. I feel more in the loop about the decisions made about my treatment than I ever have before, and for me, that’s extremely comforting,” said David.
The rapport David has built with the ACHD Center staff has also helped to put him at ease, especially during emergency situations. In 2011, David was touring on the audio crew with the Sesame Street Live show when he began experiencing what felt like electrical shocks. He immediately called the ACHD Center where Dr. Cook and his team devised a plan to manage his care, even from several states away. It was determined that the shocks were being generated by his defibrillator, and another surgery was scheduled to replace thedevice.
In 2013, David experienced further complications. During a regular clinic visit, doctors determined that David’s pulmonary valve was essentially disintegrating. They recommended transcatheter pulmonary valve therapy (Melody® Valve), a minimally-invasive alternative to open-heart surgery for patients with pulmonary valve conduit failure. This procedure does not replace surgery; rather, it is intended to delay the need for surgical intervention.
“Children’s was one of the first centers in the nation to implant the Medtronic Melody® transcatheter pulmonary valve after clinical trials led to its FDA approval,” said Dr. Cook. “We work diligently to broaden our understanding of heart disease, develop better therapies, and quickly move advances from the laboratory to the patient’s bedside, where they matter most.”
Following pulmonary valve therapy, David was only in the hospital for a couple of days. If he had to have another open-heart surgery, he would have spent weeks, even months in the hospital recovering.
“It’s tremendous how far the field has come and I’m grateful to Dr. Cook and the ACHD staff for always pursuing every avenue to make sure I can continue to live my life to the fullest,” said David.
David returns to the ACHD Center every six months for follow-up care. While he continues to be monitored for an abnormal heart rhythm called atrial flutter, he is confident in the ACHD Center’s plan for his future, which recently included the birth of his daughter, Eva, on Nov. 12, 2014.
“A few years ago, I remember celebrating my 30th birthday and thinking that I never thought I would make it to see this day. Treatment is not a ‘one size fits all’ thing. The ACHD Center recognizes that and is committed to addressing the unique needs of its patients,” said David. “My wife, Mary, and I are grateful not only to have this amazing facility right in our backyard for my treatment and care, but also for Eva, should she ever need it.”
For an appointment or consultation with the ACHD Center, please contact us at Children's Hospital of Pittsburgh of UPMC at 412-692-5540 or UPMC Presbyterian at 412-864-2614 or by email at firstname.lastname@example.org.
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