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Challenges Faced by Parents of Children with Congenital Heart Disease

​​​The first thing most parents want to know about their unborn baby is whether the baby is healthy. From the moment parents hear the words, "Your child has a heart defect," they are thrust into a world they were not expecting. 

Even before the child is born, the joy of giving birth is often coupled with so many unique and complicated feelings—ranging from fear, guilt, sadness, shame, and confusion. Many feel ashamed of these feelings and try to suppress them, but it is important to remember these feelings are common and expected.

About Congenital Heart Defects

  • Congenital Heart Disease (CHD) is the most common type of birth defect affecting 8 out of every 1,000 newborns. 

  • Each year, about 35,000 babies in the Unites States are diagnosed with CHD. Nearly 25% of those are critical congenital heart defects—ones that require surgery or other interventions within the first year of life to survive. Parents of these children often sit by their child's side in the hospital hoping and praying their child survives.

  • As a result of dramatic advances in the medical and surgical management of CHD, 85% of infants with CHD are now expected to survive to adulthood, and CHD is regarded as a chronic disease rather than a terminal one. However, survival rates for children with critical congenital heart defects is lower; they often need specialized medical care throughout their lifetime. 

Understanding Unique Parenting Challenges

All parents are caregivers, but parents of children with CHD have extra challenges.

Learning "normal" and more specialized parenting skills:

  • Aside from the typical stresses and adjustments new parents face, in most cases, parents who have a baby with CHD are also struggling to care for a baby who may have spent months in the Neonatal Intensive Care Unit (NICU) and may have tubes or attachments to his or her tiny body.

  • When babies have open-heart surgeries, their ability to learn to eat can be compromised. Some babies have to be fed through a feeding tube. In addition to feeding issues, many children with CHD have trouble gaining weight and must go on special high-calorie diets.

Becoming an expert and advocate.

  • 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. See the additional resources at the end of this article. 

Making changes to safeguard their child's health:

  • Infants and children with CHD have weaker immune systems than the average child. They can end up in the hospital for illnesses that others recover from on their own. Thus, many parents take extra precautions to try to keep their child healthy. This may mean having serious talks with friends and family about getting their annual flu shot and a Tdap shot to prevent whooping cough. See How to Cocoon a Newborn: Only an E-Mail Away! for more information and tips.

  • As their child grows, parents must strike a balance between letting their child live "normally" and protecting them. Walking the line between healthy limits and over-protectiveness is an ongoing concern.

Struggling with the financial component of care:

  • For a child with CHD, surgical costs can be astronomical, even with health insurance. The costs of medicines and doctor appointments add up quickly, too. Many children with CHD are on multiple medications, some taken several times a day. It's not unusual for children who've had open-heart surgery to come home on six or more different medications.

Caring for their other children:

  • If there are siblings in the family, parents must also take their needs into consideration. Young children, especially, may have fears and anxieties about their brother or sister's condition that they aren't voicing. It is important to spend one-on-one time with each child and time together as a family that isn't focused on the CHD.

Educating the school and others:

  • Often, sending a child with CHD to preschool or school, or even having siblings in school, can pose challenges for parents. Again, avoiding major illnesses is a concern. Educating school staff about CHD and their child's limitations can also be difficult. Sometimes, parents get everyone together who will be working with their child, so that they all understand the condition or defect.

Living with persistent uncertainty:

  • Even if their child doesn't need any more procedures, there will always be doctor appointments that will inevitably dredge up some old memories and new fears. As children grow, it is also natural for parents to feel fear about the inherent risks of CHD and the knowns and unknowns about their child's lifelong care. The journey is never over, so support plays a big role in these parents' lives.

Why Support is So Important

Parents need for all kinds of support – informational, emotional, and instrumental – to be able to face the stress of caring for a child with CHD. 

Connecting with other parents of children with a CHD:

  • Parents and other family members are encouraged to connect with others who also have a child in their family with a heart defect. Other parents, for example, can provide a credible model of how to cope in a positive way with exceptional life circumstances.

Talking to a trained mental health professional:

  • Parents who seek the assistance of mental health professionals typically experience reductions in stress, depression and anxiety, as well as improved sleep and life satisfaction.

The Silver Lining

Life with a child diagnosed with CHD can be overwhelming, stressful, and in some cases tragic. However, some families have recognized a silver lining in having a family member with a complex medical condition like CHD. For example, siblings can be more resilient—demonstrating increased compassion, a greater sense of wonder and joy, and a greater appreciation for life. Many parents' outlook on life and priorities can change, as well, to appreciate the "little things in life" a lot more.

Additional Resources:

 

Additional information regarding congenital heart defects and lifelong cardiac care is available at the Congenital Heart Public Health Consortium (CHPHC) website, www.chphc.org. The CHPHC is housed at the American Academy of Pediatrics through a grant from the Centers for Disease Control and Prevention in an effort to utilize public health principles to affect change for those whose lives are impacted by CHD. Organizational members of the Consortium represent the voice of providers, patients, families, clinicians and researchers.​

Last Updated
5/19/2016
Source
Congenital Heart Public Health Consortium (CHPHC)
The information contained on this Web site should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.
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