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When Hearts Grow Up

Posted 2/10/2017 by UHBlog

Ask us how to manage your child’s congenital heart disease.

When Hearts Grow Up: Helping Your Child Plan for Life with Congenital Heart Disease

Heart conditions aren’t just the domain of the old or unfit. One in 100 babies is born with congenital heart disease, making it the most common birth defect.

“Congenital heart disease covers any heart defect a child is born with,” says pediatric interventional cardiologist Martin Bocks, MD. “These can range from very mild defects or an anatomic variant that never requires a fix, to the other extreme defects, where essentially there’s only one fully developed side of the heart and we have to do complex surgeries to allow the child to survive infancy, let alone (make it to) adolescence and adulthood.”

Routine ultrasounds detect many congenital heart defects prenatally, allowing doctors to devise a treatment plan even before the baby is born. In severe cases, a neonatal team will be on hand to treat the infant immediately upon delivery.

That type of planning – and periodically reevaluating plans – remains essential as kids with congenital heart disease move from infancy to childhood, adolescence and beyond.

“The overarching theme is that almost all heart conditions require some kind of lifelong follow-up,” Dr. Bocks says. “We want to change the idea that if something was done early to repair the heart during childhood, then you’re fixed and never have to be seen again, or that just because your son or daughter has turned 18, that everything is out of sight, out of mind. It’s about strategic planning for when they have these life transitions.”

Dr. Bocks recommends ongoing conversations with children, adolescents and young adults about how congenital heart disease may affect their lives. Planning is particularly important for typical life situations, such as:

  • Participating in sports. Speak with him early about which activities he’s medically cleared for and which he’s not, instead of saying “no” the day before baseball tryouts. Depending on his health, playing in recreational leagues when he’s a child may be fine, but school-sponsored teams that require rigorous conditioning may be off-limits.
  • Leaving for college or moving out. Make sure she understands her medical history thoroughly, so if, for example, chest pains send her to the emergency room, she can tell the medical team about her condition, what treatments she’s had, her cardiologist’s name and how to obtain her medical records. Stress the importance of finding a cardiologist in her new location and scheduling regular appointments – even when she’s feeling well. “With more severe cases, even if they had a good repair when they were young, different implants (like an artificial valve) may fail over time,” Dr. Bocks says. “We like to follow along regularly to make sure we’re not missing something. Sometimes letting something go for too long can have irreversible effects.”
  • Moving to or visiting a different altitude. For some heart conditions, make sure he’s aware that going from a sea-level location to a mountainous region (or vice versa) can have significant effects on his physiology. Sometimes, important precautions need to be taken.
  • Becoming sexually active. Discuss with adolescent girls and young adult females that congenital heart defects can pose significant risks to a mother and child during pregnancy, labor and delivery – and, indeed, in some high-risk cases, pregnancy is not recommended.
    “But that’s happening less and less because we do such a good job of caring for potential mothers early in their lives,” Dr. Bocks says.
  • Undergoing non-cardiac surgery or medical procedures. Congenital heart disease can complicate and increase the risk of other procedures that are recommended by doctors for non-heart issues, so parents and young adults should be encouraged to ask questions, make doctors aware of their heart condition and discuss potential risks.
    “Most surgeons who are going to operate on a congenital heart patient will ask for some kind of cardiac clearance,” Dr. Bocks says. “And we are usually more than happy to provide advice regarding perioperative management.”
  • Advancing into middle age and beyond. This is when acquired heart-related issues, such as high blood pressure and coronary heart disease, tend to appear and can compound an existing congenital heart condition. Alert your young adult child to the signs of other heart-related ailments.

Most youngsters with congenital heart disease grow up to live productive lives – including many whose early days may have been frightening.

“We do what we do to infants and young children because we want them to lead as normal a life as possible,” Dr. Bocks says. “We perform extremely complex, high-risk procedures knowing it is their best chance to help them have as close to a normal life and lifespan as possible.”

Martin Bocks, MD is director of the Pediatric Cardiac Catheterization Lab and program director of Pediatric Interventional Cardiology at University Hospitals Rainbow Babies & Children’s Hospital. You can request an appointment with Dr. Bocks or any other doctor online.

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