Helping to heal little hearts and big ones, too

American Heart Association offers tools and resources for families of children with congenital heart defects

DALLAS, TX - Waiting on the arrival of your bundle of joy is an exciting time and, as days tick by, the prospect of a healthy bouncing baby becomes a reality.  Yet most families don’t know the risks of congenital heart defects (CHD), what they are and how they are treated until they are diagnosed just before, or after, the baby is born.  That’s why the American Heart Association is working to educate parents and their loved ones during pregnancy on things they should know.

“Before Blake was born, I wish I had known how common CHDs are in children and that, as a mother  there was nothing that I did to cause his condition,” commented Tiffany Galligan, mom and caregiver to Blake, 4.  “It would have been great to know that they are treatable and, if detected early, children can live full, happy lives.” 

In fact, about 32,000 infants are diagnosed with a congenital heart defect each year and 1.3 million Americans are living today with a CHD.

Blake was diagnosed with Hypoplastic Left Heart Syndrome, or HLHS.  He had his first open-heart surgery at seven days old, the second at five months old and his third when he was three  years- old.  “No one in our family had a similar condition – this was new to us,” Tiffany continued. “We were in shock and disbelief when he was diagnosed at a day old and felt like our world was crashing down around us.”

Parents need credible information and peer support during this time. In an effort to help provide families the tools and information parents need to help prepare them, or offer support and information during diagnosis and treatment, the American Heart Association has a web portal that breaks down the meaning of a CHD, most common types of CHDs, treatment, and what caregivers can do when their little one is diagnosed with a CHD and personal stories that help offer support and motivation.

“The diagnosis of a congenital heart defect can be devastating and frightening for parents.  Medical care teams are able to educate families about congenital heart disease, whether the diagnosis is made prenatally or after birth. With the knowledge and support given by health care providers, parents as well as extended families are better equipped to tackle the medical and surgical treatment, which may be difficult, as they help their child along the road to recovery.” Commented Catherine L. Webb, M.D., M.S, Pediatric Cardiologist, Professor of Pediatrics and Communicable Diseases at the University of Michigan Medical School and spokesperson for the American Heart Association.  “I often find myself reassuring parents that there is nothing they could have done to prevent their child's congenital heart defect.  It’s not anyone's fault.  Although congenital heart disease is the leading cause of death in children with birth defects, the prognosis is quite hopeful, as there are more than 1.3 million Americans living today with some form of a congenital heart defect.  Parents should also know that the American Heart Association’s tools and resources are focused on preventing as well as improving diagnosis and outcomes in congenital heart disease.  The prognosis for patients with CHD is far superior today compared to even 10 years ago.  Research supported by organizations, such as the AHA, will continue to improve outcomes and quality of life for patients with congenital heart disease.”

As for Blake – what it is his prognosis?  “He is living life as a normal kid.  He plays soccer, swims, goes to gymnastics and attends preschool.  We don’t know what the future has in store for our little guy.  He may need more surgeries later down the road, or even a transplant, but we are enjoying every day, every smile and every accomplishment,” Tiffany concluded.  “I just hope the parents of kids with CHDs take care of themselves so they can take care of their little ones.”

For more information on congenital heart defects and support for caregivers visit www.heart.org/congenitalheartdefects and www.heart.org/caregivers.

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About the American Heart Association 
The American Heart Association is devoted to saving people from heart disease and stroke — America’s No. 1 and No. 4 killers. We team with millions of volunteers to fund innovative research, fight for stronger public health policies, and provide lifesaving tools and information to prevent and treat these diseases. The Dallas-based association is the nation’s oldest and largest voluntary organization dedicated to fighting heart disease and stroke. To learn more or join us, call 1-800-AHA-USA1 or any of our offices around the country, or visit heart.org.

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