When most people think of February, one of the first things that comes to mind is Valentine’s Day. This holiday is a time to celebrate love and compassion. With that sentiment in mind, SGF wants to shed light on an important topic close to our hearts: congenital heart defects (CHD). February 7th – 14th is recognized as Congenital Heart Defects Awareness Week.
Join us as we honor CHD by sharing stories of families who have experienced the unique journey of caring for a child with CHD along with helpful resources to learn more about and navigate this disease.
Understanding Congenital Heart Defects
What is CHD? One or more problems with the heart’s structure that have existed since birth. Congenital heart defects range in severity from simple problems, such as “holes” between chambers of the heart, to very severe malformations, such as the complete absence of one or more chambers of valves. These defects can increase the risk of certain medical conditions, including pulmonary hypertension, arrhythmias, congestive heart failure, infective endocarditis, and anticoagulation.
Prevalence and statistics:
→ 1% of newborns are born with a CHD every year.
→ A baby’s risk of having a CHD is at least three times more likely if their parent has a CHD.
→ 15-20% of CHDs are related to genetic conditions.
→ More than 2.4 million U.S. children and adults are living with a CHD.
→ About 1 in 4 babies with a CHD have a critical CHD. Infants with critical CHDs generally need surgery or other procedures in their first year of life.
→ CHD treatment helps kids live into adulthood.
Causes and risk factors:
A lot of times, the cause is unknown. Defects can be a result of any changes in their individual genes or chromosomes, a combination of genes and other factors, such as environmental factors, the mother’s diet and/or health conditions, or even the mother’s medication use during pregnancy.
Anyone can have a child with a congenital heart defect. If you or any family members have already had a baby with a heart defect, your risk of having a baby with a heart defect may be higher.
Walking in the Shoes of CHD Families
Some of our Gifted Families have shared a glimpse into their experiences in navigating this diagnosis and what life looks for their children and family. One of our SGF kiddos, McKinley, was born with 5 CHDs: double inlet left ventricle, double outlet left ventricle, transposition of great arteries, atrial septal defect, and pulmonary stenosis.
As a newborn, she underwent atrial septostomy in addition to suffering from a stroke at only 3 weeks old. This was only the beginning. After spending months in heart failure, she had her first open-heart surgery by the time she was 7 months old.
As a parent, it’s a nightmare to imagine your child going through a major surgery. However, that is the reality for many of these parents.
Jake underwent open heart surgery at just 5 months old to repair a congenital heart defect individuals with down syndrome commonly have. Izzy had her first heart surgery at 5 days old and second at 9 months old. During a follow-up echocardiogram, they were informed that one of her repairs was failing and her third surgery would be in the near future. Lawson and his family also found themselves spending the majority of the first year in hospitals with two heart surgeries in addition to other procedures and difficulties.
Life looks very different for each of these families than it might for most. Special care, doctor appointments, therapy sessions, and operating rooms consume much of their daily lives. Oftentimes, it’s hard to determine the best way to help. However, one thing they can always use more of is to simply support them. Emotional support goes a long way.
Some other ways that are small, but can help in big ways include:
→ Gift cards for gas and groceries.
→ Meal drop-offs (be sure to find out any diet restrictions first).
→ Learn their schedule and take them a coffee/tea during one of their children’s appointments.
→ If they want to vent their frustrations and fears, let them. You might not have the answers or solutions, but they are not usually just looking for support.
→ Pray with them!
The American Heart Association also has stories from parents and survivors of CHD you can read here.
Embracing Love and Strength
Not just during the week of Valentine’s Day, but every day, let us embrace the strength and love that define the journeys of families caring for children with congenital heart defects. By sharing stories of resilience, providing educational resources, and promoting support networks, we can empower and uplift these families.
At SGF, is it our mission to create a world where every child – regardless of abilities – receives the love, care, and opportunities they deserve. This includes children with CHD. Let us celebrate their strength and inspire others to choose love in the face of adversity.
Congenital Heart Defects Support + Resources
Children’s Heart Disorders, Inc. National Association offers support for parents, kids, families, and bereavement services.
CHOA: Kids at Heart provides many forms of support for families, such as events for heart families, online support, family support dinners, new mom support groups, and more.
Emory Healthcare: Parenting Teens with CHD
American Academy of Pediatrics: Congenital Heart Defects Toolkit
American Heart Association: Congenital Heart Defects
The Children’s Heart Foundation: It’s My Heart book
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