Parents

Parenting teenagers with CHD can be challenging. Here are some answers to common issues and questions.

How to talk with kids about their CHD

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 (see ‘Resources and Information’ section).

Read more: https://healthtalk.org/parents-children-congenital-heart-disease/overview

There are several areas that may be of interest to parents along the left-hand side of the Healthtalk.org site. These include Discovery, Adapting to life, Feeding and medication, Death of a child, Surgery and cardiac catheterization, Child’s quality of life and development, and Impact on the family.

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, https://www.youtube.com/watch?v=_oG14YQfl8g (for younger kids) https://www.youtube.com/watch?v=ebzbKa32kuk (for older kids) and https://my.clevelandclinic.org/health/body/21704-heart, 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 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.
    There are a number of books specifically targeted towards children living with a CHD. Some examples include Blue Lewis and Sasha the Great by Carol Donsky Newell, Matty’s Heart by C.J. Hribal, Nathan’s Special Heart by Jessica Ennis, Pump the Bear by Gisella Olivo Whittington. The following websites list books to help parents talk to their child about their special heart:

Should I get some help?

Parents need for all kinds of support with understanding and dealing with emotions and stress of caring for a child with CHD. One of your best resources may be parents of other children with a heart defect. Other parents, for example, can model how to cope in a positive way with exceptional life circumstances. And sometimes parents need to talk with a trained mental health professional. Parents who seek the assistance of mental health professionals report reductions in stress, depression and anxiety, as well as improved sleep and life satisfaction.

Informational Websites and Support Groups

Knowledge is power. Parents often immerse themselves into learning as much as they possibly can about their child’s diagnosis, medication, and treatment plan. It is important to avoid “internet overload” by sticking to reputable websites. The ones listed below have been vetted and meet our standards for factual information with minimal bias.

Suggested parent questions for a provider

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 for medications:

  • What does this medicine do?
  • What will happen if my child don’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 for 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?

Communicating with schools and developing a 504 plan

Often, sending a child with CHD to school, or even having siblings in school, can pose challenges for parents. Several challenges face parents 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.

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.

Should I stay legally involved and informed of my child’s health (with his/her consent) after age 18?

To ensure that the best decisions are made for children and adolescents, these decisions should be made jointly by members of the health care team, the child or adolescent’s parents, and sometimes the child or adolescent. Children and adolescents should be involved in decision-making to an increasing degree as they develop, until they are capable of making their own decisions about treatment. When someone turns 18, they become an adult and are expected to make the right to make decisions about their medical treatment, finances and life. If your child does not have the capacity to make good decisions when they turn 18 about their health and welfare, then they may need a legally appointed guardian or alternative. A good resource for understanding this process is located at http://www.friendshipcircle.org/blog/2012/10/16/when-your-child-turns-18-a-guide-to-special-needs-guardianship/

  • Can my child cope or handle the stress of managing their health and medical care?
  • What about transitioning the developmentally delayed child—should this occur or should we remain with a pediatric cardiologist for life?
  • How to impress upon child that this is important/ serious/ necessary?
  • How do I empower my child to speak up, take ownership, be engaged?

How not to hover

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.