Healthy Congenital Heart Disease

It can be difficult to know what to tell a toddler or a young child about their heart condition, their treatment, or their operation. Suggestions for what to tell children, advice, and information are available from various support organizations.

Some suggestions other parents have made by chronological age include:

• 2-3 years: Make all new tests and visits fun and an adventure: Use childlike language and fun names for items such as ‘jelly belly’ for echocardiography gel; ‘sticky pads’ for the ECG, and zipper for a scar. One mother referred to her daughter’s pacemaker as ‘Pacey’. Consider buying a doctor’s and nurse’s kit to help prepare a 3-year-old for a future operation. Other parents choose not to tell children this young about an upcoming surgery.
• 4-6 years: Use simple language and simple anatomical landmarks. Continue to make it fun if possible. Children who have had surgery as a baby are unlikely to remember what happened to them and may need explanations as to why they have a scar on their chest as they start to compare themselves to other children.
• 7-11 years: Start to include science they are learning in school or look up heart models on the internet that you can look at together and discuss. This may be a good age to show pictures that you may have taken of them when they were in the hospital as infants so they can discuss what happened. They may want to share these pictures at school or use them in projects. This is a good time to start talking about special precautions that your child will need to observe and how they may be more susceptible to illness and injury- that they need to be extra careful because of their special heart. Discuss upcoming surgeries using drawings, books, the internet, and models so the child can visualize what a real heart looks like. Help your child understand what to expect during upcoming procedures so they can prepare themselves.

As your child’s parent, you are probably used to asking lots of questions but just in case you need a guide, here are some to think about the next time you visit their cardiologist.

Questions for an illness or symptom:

• What is the actual defect in my child’s heart?
• Can you draw me a picture or show me what’s wrong?
• What causes this type of problem?
• Will there be any long-term effects due to the defect?
• Can it be surgically repaired? What will this look like?
• Will there be more than one surgery?
• Are there any activities or foods my child should avoid?
• Will they be able to go to school?

Questions about medication:

• What does this medicine do?
• What will happen if my child doesn't take it?
• Can we ever stop the medicine?
• What are the side effects?
• What if we accidentally miss a dose?
• If I don’t notice any improvement, how long should I wait before calling you?

Questions about tests and treatments:

• Why is this test needed?
• How soon must we get the test?
• What will happen if we don’t get the test?
• Are there any risks involved?
• Will it hurt? If so, is there anything we can do to lessen the pain?
• Can you perform the test or treatment in your office, or will we need to go to a lab or other facility?
• Are there any side effects?
• How should we prepare for the test or treatment?
• What side effects or changes should I report to you?

Often, sending a child with CHD to school, or even having siblings in school, can pose challenges for parents. Parents face several challenges from educating school staff about CHD and their child’s limitations, completing necessary forms, and limiting exposure to viral and bacterial infections. One of the best approaches may be to get everyone together who will be working with their child so that they all understand the condition or defect.

"The greatest legacy we can leave our children is happy memories." – Og Mandino

This is in fact what is necessary to determine whether your child is eligible for accommodations under Section 504 of The Rehabilitation Act of 1973. A school-based 504 team will convene to review your child’s records, including the physician’s statement (if applicable), classroom observations and assignments, assessment data, and other information. If your child is eligible to receive accommodations, a 504 Plan will be developed with your input and consent. The 504 Plan may be reviewed at any time, but at a minimum must be reauthorized each school year.

As hard as it may be, the best thing is to seek out a specialist in adult CHD who will be able to care best for your child as they age. Begin this transition early. You are the best expert on your child and their capacity for handling and accepting change but some sources suggest beginning the discussion with your pediatric cardiologist and child when they enter their teens. Some programs offer tours and times to meet adult providers in a more relaxed environment well in advance of their first official appointment. Of course, your pediatric cardiologist will provide a comprehensive transition report to the adult provider and a coordinated program will assure transfer of all pertinent medical records and results.

As your child continues on this congenital heart disease journey, their needs will change throughout their lifetime. This is why it’s important to build a strong foundation of care, resources, and support to draw upon when needed. There will certainly be ups and downs along the way but know that the majority of babies born with congenital heart disease go on to live meaningful and fulfilling lives as adults. And, as your child grows, striking a balance between letting them live “normally” and protecting them is hard work. Walking the line between healthy limits and over-protectiveness is an ongoing concern.