When Betty de Aragon pushed her husband to see a doctor about his high blood pressure, it took her back to a role she thought she’d left in childhood – that of a congenital heart disease patient.
Due to CHD – which involves heart and blood vessel abnormalities present at birth — she underwent two open heart surgeries before she was five.
“I hadn’t seen a cardiologist for years,” said de Aragon. “Once I hit my 20s, I was feeling good, living life.”
As an adult she incorrectly believed she didn’t need cardiology care. “I didn’t know I should be worried, I thought I was fixed,” said de Aragon, one of many adults with CHD.
Because of advances in technology and research, people with CHDs are living longer than ever before. The result is that there are now more adults than children with CHD.
“These patients often have that sense that their heart has been ‘fixed’ and they don’t need follow-up,” said Ami Bhatt, M.D. and director of the Adult Congenital Heart Disease Program at Massachusetts General Hospital in Boston, Massachusetts. “However, in adulthood they can develop complications from the underlying disease or the heart repairs that kept them alive as children, therefore, these adults need lifelong cardiac care.”
Dr. Bhatt is the lead author of an American Heart Association scientific statement released Monday offering recommendations for treating adults with congenital heart disease. The statement published in the journal, Circulation.
“A seemingly simple diagnosis from childhood can sometimes have complications in adulthood, while people with more complex congenital heart issues may stay stable with age,” Bhatt said. “People with congenital heart disease may also develop acquired heart disease and attention to controlling heart disease risk factors like overweight, diabetes, blood pressure, smoking and sedentary lifestyle is important and should not take a back seat to their congenital medical history.”
Bhatt said that’s why it’s so important that the AHA statement offers guidance in how to take care of these survivors.
De Aragon said she wished she’d known earlier that complications could occur.
After the trip to the doctor for her husband’s blood pressure, she did begin seeing a cardiologist regularly, although he wasn’t a specialist in adult care.
She found that neither her cardiologist or her obstetrician were quite sure how to treat her during her first pregnancy.
“There was a big disconnect between them. I think they were both very nervous and probably coddled me more than necessary,” de Aragon said. “By my second pregnancy, I had a great specialist who has helped me learn to live a full life – within limitations, but without being fearful of enjoying myself and my family.”
De Aragon had a pulmonary valve replacement after her son’s birth and she knows additional surgery may be in her future.
Today, she also helps raise awareness of CHDs and other heart disease risks for women through the AHA’s Go Red For Women initiative.
“It’s always a relief when I have my exam and my doctor tells me everything is fine, I’m doing OK,” she said. “But I know now, ignorance isn’t bliss, and I need to always be listening to what my doctor – and my body – are telling me.”
For more information:
- Support Network for CHD survivors