Today, over 3 million children and adults are living with congenital heart disease, and new treatments and technologies are bringing greater hope to families. In fact, in 2005, the number of adults living with a congenital heart defect outnumbered that of children living with a congenital heart defect for the first time. This means there is tremendous hope for children diagnosed with congenital heart disease.
"This is very positive and speaks to our mission to being able to treat the effects of congenital heart defects," says Amit Verma, M.D., a cardiologist at Pediatric Heart Specialists, The Heart Center at Children's Health℠. "Over 90% of children living with congenital heart disease are expected to live into adulthood and beyond."
What health effects are related to congenital heart defects?
The specific health effects of a congenital heart defect depend on the type and severity of the heart defect a child is born with. Children diagnosed with a congenital heart defect at birth may experience difficulties with poor blood circulation, fatigue or rapid breathing. Some may have an increased risk of developing other medical conditions.
The severity of congenital heart defects ranges from complex to simpler problems. Some more complex defects, such as hypoplastic left heart syndrome or Tetralogy of Fallot, can be associated with different types of syndromes or affect other organ systems as well. "So, shortly after birth, the team identifies what extra cardiac issues may be present," says Dr. Verma.
These issues can include gastrointestinal issues or renal issues, which can sometimes go hand-in-hand with certain heart defects and associated syndromes.
However, there are simpler defects, such as ventricular septal defects, that are more isolated issues and may have few additional health effects.
Can heart defects affect a child's development?
One of the biggest topics on the horizon is neurodevelopmental outcomes of children with congenital heart defects. Studies are finding that most times, the cognitive function is typically in the normal range, but what can be challenging are issues related to executive functioning – the ability to plan and perform a complex task.
"In children with varying degrees of congenital heart disease, executive functioning can be impaired to a mild extent or more," says Dr. Verma. "This is something that can be identified at a younger age when the child is involved in school."
Researchers are working to uncover the reason behind this connection – whether it is tied to how the brain is affected in utero or related to a complex surgery or a long hospital stay. "If we can identify the reasons now, we're better able to face them head-on and work to find ways to intervene early on," says Dr. Verma.
Living with congenital heart disease
Because of improved diagnostics and treatments for congenital heart defects, Dr. Verma says many more children and adults are living longer and healthier lives.
A child's care team can counsel each parent and family on the right treatment approach – and those conversations continue throughout a lifetime. "We tell our parents that this is a journey we'll tackle together," says Dr. Verma.
Congenital heart disease and exercise
As kids with congenital heart defects grow, some may face physical limitations or restrictions. But the spectrum is wide, and Dr. Verma points out that there are even Olympic athletes who were born with a congenital heart defect.
"A child diagnosed with the most basic heart defect who had complete repair will likely not experience any restrictions and can engage in the sports they want to. Even a child with a moderate congenital heart defect, where the defect is corrected, usually doesn't have any restriction," says Dr. Verma. "When you get to the more complex conditions, these kids can do many activities, but they may be self-limiting, meaning they go at their own pace."
Caring for congenital heart disease into adulthood
Today, children with congenital heart disease are living well into adulthood. Because of this, most children with a heart defect are followed by a physician for life. Sometimes a child may be released from care only to need clearance for participation in sports later. In their adult years, many want to plan for a family of their own. This is when it becomes important to have a conversation with their cardiologist.
Prognosis of living with a congenital heart defect
The future for children living with congenital heart disease is very encouraging. Every day, new technologies are changing to the point where the most serious cardiac issues are being addressed through less-invasive procedures. And because of research, the outlook related to the long-term care of children and adults with congenital heart disease is more promising every day.
The Heart Center at Children's Health, including Pediatric Heart Specialists, provides expert diagnosis and effective treatment for the full spectrum of pediatric heart conditions so that children can have healthy childhoods. Learn more about how we care for congenital heart defects at the Heart Center.