Adolescent and Adult Congenital Heart Disease Patient Stories :: Nationwide Children's Hospital

Mark Morris

 

Mark Morris, a 20-year-old from New York, came to Nationwide Children's Hospital in 2012 to undergo treatment for his heart condition, Tetralogy of Fallot. Watch videos of his journey from consultation to recovery and going home.

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Jamie Lanier

Nationwide Children's has one of the few adult programs for congenital heart disease in the country, and Jamie Lanier, 33, has been treated here for his entire life. He is currently seeing Dr. Daniels for treatment.

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The Columbus Dispatch follows Jamie's treatment at Nationwide Children's Hospital.

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Mandi Bone

Like many young girls, Mandi Bone dreamt about someday getting married and having a large family. She was born with a congenital heart defect called aortic stenosis which required heart valve replacement surgery at 4 years and then again at 14 years of age.   [read more...]

Following this, she did well and found the man of her dreams, becoming married in 2003. Due to having a mechanical heart valve she required the use of a “blood thinner” to prevent blood clots, however, this medication can cause significant birth defects in the developing baby. Therefore, at 25 years old, Mandi chose to undergo another valve replacement surgery, this time using a tissue valve, which does not require long-term “blood thinners”. She became pregnant in 2004 and delivered a healthy baby girl, named Amelia.

Unfortunately, following this, she developed recurrent aortic stenosis and underwent another mechanical heart valve replacement. She became very ill following the surgery and was placed on a heart/lung bypass machine for 4 days. Due to the toll taken on her heart, she was advised that another pregnancy would be dangerous for her. Therefore, she and her husband chose to consider adoption of another baby. Through the use of an adoption agency, they were thrilled to find that a troubled young woman was pregnant and wanted to find a good family for her baby. Little Evelyn Sue was born on December 22, 2007 and came into the loving arms of Mandi and her husband, Greg, a few days later. Many women with congenital heart disease were told that they “can never have children or shouldn’t have children”, but there are other options. “Although we have a child that is biologically ours, Evelyn is just as special to us”, said Mandi. Adoption is a great alternative for parents with congenital heart disease that may not safely sustain a pregnancy. “To us, the end result of getting a baby was far more important than actually carrying a pregnancy, and the chance that I may not survive really hit home with us. We couldn’t be more happy with our two little girls who have a Mom and Dad that can keep up with them”.

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Anita Mitchell

Anita, like many adults born with congenital heart disease, thought that she was “cured or fixed” from heart surgery in childhood and, once an adult, didn’t need specialized congenital heart disease care. For many years, she did very well, having three children and working a full-time job. She initially came to Nationwide Children’s Heart Center, not for her own heart evaluation, but for that of her teenage son.   [read more...]

During a review of family medical history, she mentioned having Tetralogy of Fallot, a congenital heart defect that causes problems getting enough blood out to the lungs, that had been surgically repaired in childhood. This, in turn, prompted further evaluation by the Adolescent and Adult Congenital Heart Disease (ACHD) Program that revealed she needed another heart surgery to replace leaking valve.

In 2005, it was estimated that for the first time in history, there are more adults living with congenital heart disease than children, with more than 1 million adults with congenital heart disease living in the United States. As patients with congenital heart disease become adults, they may develop new problems and should continue to be followed by a congenital heart specialist to preserve heart health. Because of these factors, specialized centers have been developed across the country to care for adolescents and adults, because most adult cardiologists are not trained in congenital heart disease. Unfortunately, across the United States, less than 10% of ACHD patients are receiving the recommended cardiac care.

The ACHD team at the Nationwide Children’s Heart Center is a dedicated team of medical professionals, having devoted their careers to the care of their patients. The cardiologists are Board Certified in Internal Medicine and Pediatric Cardiology, therefore understand congenital heart defects and their surgeries, as well as other adult issues.

Initially, Anita was very surprised that she needed another open heart surgery but says “I felt that everyone was very straightforward and honest which allowed us to build a trust. It really helped me feel more like an active participant, rather than feeling such a loss of control”. She is now a strong advocate for adolescent and young adult patients “staying within the system” to maintain routine specialized cardiac follow-up. “I think, had I remained in specialized ACHD care and had heard about the possibility of long-term complications like a leaking heart valve, it probably wouldn’t have been such a big surprise to need another surgery and may have been easier to handle”, said Anita.

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Teddy Noggle

Teddy Noggle was born in 1942 with a congenital heart defect called Tetrology of Fallot. Like most babies with this condition, he was called a “blue baby,” because not enough blood was able to get to his lungs. The treatment for his condition involves creating a “shunt”, or pathway, for blood to get to the lungs for oxygen.

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Through the years, Teddy had three of these surgeries. The last one was done when he was 13 and lasted while he grew up, got married, and started a career. Over the years, Teddy began to feel short of breath and couldn’t do his normal daily activities. At 38 years of age, he needed another surgery, patching two holes in his heart and widening the pulmonary valve, the valve that leads blood to his lungs.

Following this, Teddy did well until age 62, when he developed congestive heart failure. His physician referred him to the Adolescent & Adult Congenital Heart Disease Program at Nationwide Children’s Heart Center. Dr. Curt Daniels evaluated Teddy’s heart and found severe leakage of the pulmonary valve as well as enlargement of the right ventricle, or heart chamber below the pulmonary valve that is responsible for pumping blood to the lungs. Mark Galantowicz, M.D., cardiothoracic surgeon and co-director of the Nationwide Children's Heart Center, successfully replaced his heart valve in April 2005. Was it strange for Teddy to have surgery at a children’s hospital? “They took great care of me,” said Teddy. “They were well equipped, and it was very enjoyable. I had confidence in them that they knew what they were doing. I just wasn’t afraid to put my life in their hands.”

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Jeff Wilson

44-year-old Jeff may not look like your typical Children’s patient, but like thousands of other adults, he’s discovered that the best place to receive care for his congenital heart disease is at Children’s Hospital.

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Jeff was born with a small hole in his heart that never closed, but his condition wasn’t discovered until he suffered a stroke after running a marathon.

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