5 Tips to Caring for Your Child with Congenital Heart Disease

Congenital Heart Disease

5 tips to caring for your child with congenital heart disease

In recognition of World Heart Day on September 29thTeam Select is sharing five tips to caring for your child with congenital heart disease. 

“Congenital (meaning present at birth) heart disease is a term used to describe a number of different conditions that affect the heart. These heart abnormalities are problems that occur as the baby’s heart is developing during pregnancy, before the baby is born.” – Children’s Hospital of Philadelphia

It’s important for parents to know that congenital heart disease is almost impossible to prevent while pregnant, under normal circumstances. 

Types of congenital heart disease include: 

  • Ebstein anomaly 
  • Hypoplastic left heart
  • Total anomalous pulmonary venous return
  • Transposition of the great vessels
  • Tricuspid atresia
  • Truncus arteriosus
  • Aortic stenosis
  • Bicuspid aortic valve
  • Atrial septal defect (ASD)
  • Atrioventricular canal (endocardial cushion defect)

For a full list, please visit MedlinePlus.

Tip #1

Create and maintain a close relationship with your child’s cardiologist 

Maintaining a close and trusting relationship with your child’s pediatric cardiologist will create a clear line of communication between your family and your child’s provider. To build a strong relationship with your child’s provider, try prioritizing health issues to discuss upon arrival and always be open and honest in your communication with them. 

Tip #2 

Get outdoors and get moving

Children with congenital heart disease are encouraged to stay active to improve their heart health and reduce their risk of further complications. According to John Hopkins Medicine, some additional benefits of exercise include reducing stress hormones that can negatively impact the heart and slowing your heart rate and lowering blood pressure. 

 Fun family activities can include:

  • Taking a hike in nature 
  • Bowling
  • Mini golf 
  • Goat yoga 
  • Jump rope competition 
  • Field sports like soccer or kickball 

Etsy is a unique website that includes a variety of sellers. Check out these Spring Movement Cards for you and your family!  

Tip #3

Consult a feeding specialist, if needed. 

Familydoctor.org shares the difficulty parents may have feeding their child with congenital heart disease. 

“Babies who have heart disease tend to get tired easily while they’re feeding. If feeding makes your baby tired, try giving smaller amounts of breast milk or formula at one time. But feed your baby more often. Burp him or her often, too. Babies who have trouble feeding tend to take in a lot of air. This can make them feel full before they’ve taken in enough milk or formula.” – Familydoctor.org

Tip #4 

Join a support group. 

As a parent of a child with congenital heart disease, or birth defect in any capacity, hearing from other parents alike can build a sense of belonging, community, and help you and your family provide the best care possible for your loved one. 

For a full list of resources, please visit the CDC’s links to congenital heart defect resources.

Tip #5 

Stay up to date with the latest technology. 

By staying current on what devices or software are available, you may be able to utilize this technology in partnership with your physician or surgeon to best care for your loved one.