Jodi Lemacks, Esq
Mended Little Hearts, National Program Director
Being a parent of any child is not easy, but parenting a child with congenital heart disease (CHD) poses unique challenges. Parents are often thrust into a world of unknowns; they are required to learn "normal" parenting skills in addition to learning new medical terms, how to use medical equipment, and what to do in an emergency. Worry and fear are often present in all new parents, but parents of children with CHD often feel that they experience more than their share of worry and fear. In fact, when Mended Little Hearts, a national parent support organization, asked on its Facebook page how often parents think about their child's CHD, out of the 184 that responded, 93% stated that they thought about their child's CHD every single day.
Obsessively thinking about CHD poses two major problems: 1) parents have too much anxiety and stress; and 2) kids, inevitably, feel some of that stress. So what can parents do. First, it is vitally important to find ways to take care of yourself—eating right, exercising, taking breaks, and getting enough rest. Many parents feel that they are unable to do these things when caring for a new baby with special needs; however, even 5-10 minute increments of rest, exercise, and quiet time can be beneficial for releasing some stress and tension. Second, it is important to avoid letting CHD define your life and your family's lives. This is difficult with regular medical appointments, medications, and issues that arise, but find other things to focus on so that your family isn't centered around your child's CHD.
To reduce stress in children with CHD and build a positive self-esteem, it is important that you are careful about how you talk about CHD. If you say you hate CHD and see CHD as bad or evil, your child will feel that a part of him or her is bad. Clearly, this disease is unfair, and we would much rather our kids didn't have it, but they do. Another thing you can do is focus on all of the things your child and family CAN do instead of what they can't. It's easy to look at what everyone in the family lost, but find the things you have gained or that you still can do instead. Often parents and siblings gain more compassion and acceptance of others because they had to deal with CHD. It not only changes families in bad ways, but in good ways too.
The best piece of advice for parents of children with CHD (and one that is often hard to follow) is to stay in the present moment and take things one moment at a time. Getting stuck in the trauma of the past or fearing the future doesn't help anyone. Focus on hear and know, and what is happening and what you can do in this very moment. Remember, the present is a gift.
Find answers to frequently asked questions on the CHPHC.org website.