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Heart to Heart with Anna
Archives Available
January 28th 2014: NonCardiac Health Issues for Survivors with Complex Congenital Heart Defects
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There are over one million adults alive with a congenital heart defect or CHD. Many surgeries performed on survivors are corrective but not curative. The non-cardiac health issues that seem to appear fairly regularly include, but are not limited to: problems with teeth, (i.e. an abscess, needing wisdom teeth removed or needing braces); scoliosis; problems with legs or feet requiring braces or surgery, pregnancy or female problems, male babies with undescended testicles or concern about circumcision, eye problems, protein-losing enteropathy, other intestinal problems, plastic bronchitis, asthma
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Archives Available on VoiceAmerica Health and Wellness Channel
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Lauren Bednarz
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My name is Lauren Bednarz and I am 26 years old. I was born with a complex congenital heart defect called tricuspid atresia, hypoplastic right ventricle or simply put "half a heart." I have had two open-heart surgeries, the last being the Fontan Procedure 24 years ago. I was also born with two other medical issues: the first was an eye muscle disease for which I had patch therapy as a young child. I got my first pair of glasses at 9 months old and have had three eye muscle surgeries so far (at ages 18 months, 7 years old, and 20 years old). I also have congenital scoliosis, which was not formally diagnosed until about 14 years of age. X-rays revealed I have an extra vertebrae in my lower bac
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David Simpson, Ph.D.
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David Simpson, Ph.D. has had a 20-year career in Medical Physics. He married his wife Helen in 1997. They have 3 children: Alasdair, Eleanor and Catherine. Alasdair was born with aortic atresia, a variant of hypoplastic left heart syndrome or HLHS. In October 2007 Alasdair developed protein-losing enteropathy or PLE, a potentially fatal condition.
Knowing no one else with PLE, Helen and David were frustrated. The heart and intestinal specialists didn’t work together, even though PLE is not uncommon in HLHS survivors. They felt isolated until they discovered the Children’s Heart Fund, which was committed to finding a cure for PLE.
David flew to the United States to meet with Dr. Jack Rych
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Dr. Amy Roberts
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Dr. Amy Roberts is a cardiovascular geneticist and researcher. She is also an Assistant Professor of Medicine at Boston Children’s Hospital. She is board certified, specializing in Medical Genetics. She graduated from Dartmouth Medical School, completed a residency in pediatrics at the University of Massachusetts Medical Center and then completed a second residency in Medical Genetics at Harvard Medical School in 2004. Dr. Roberts is a published author, having articles published in peer-reviewed journals.
She has done research specifically addressing Noonan Syndrome, Barth Syndrome, dilated and hypertrophic cardiomyopathy, and Potocki-Lupski syndrome. She has also done other research into
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