Challenges Faced By Parents Of Children With Congenital Heart Disease

Challenges Faced By Parents Of Children With Congenital Heart Disease

 

Even before a child is born, the experience of giving birth is often linked to a variety of unique and complex feelings—ranging from anxiety, guilt, sadness, shame, and uncertainty. Many parents of children with CHD feel ashamed of experiencing these feelings, but it's essential to remember these feelings are common and expected.

 

Understanding Unique Parenting Challenges

 

Parents of children with CHD face unique challenges. Let's take a look at some of them.

 

Learning "normal" and additional specialized parenting skills: aside from everyday stressors and adjustments that new parents typically face, parents who have a baby with CHD also struggle to care for their baby who may have spent a few months in the Neonatal Intensive Care Unit (NICU) and may have tubes or attachments to their tiny body.

 

When babies go through open-heart surgeries, their ability to learn how to eat can be compromised. Some babies need to be fed through a feeding tube; additionally,  many children with CHD have trouble gaining weight and need to follow high-calorie diets.

 

Becoming an expert and advocate: Knowledge is power. Parents often immerse themselves in learning as much as possible about their child's diagnosis, medication, and treatment plan. Remember to stick to reputable websites and trustworthy content.

 

Making changes to protect their child's health:As their child grows, parents need to balance letting their child live 'everyday life and protecting them. Creating a boundary between healthy limits and over-protectiveness is a fine line and ongoing concern.

 

Struggling with the financial aspect of treatment: For a child with CHD, medical costs can be enormous, even with insurance. The costs of prescriptions and ongoing appointments can add up quickly. Countless children with CHD are on multiple medications, some taken various times a day. It's not uncommon for children who've had open-heart surgery to come home with multiple new medications.

 

Caring for siblings: If there are other siblings in the family, parents must also consider their needs. Young children, particularly, may have fears and anxieties about their sibling's condition that they aren't verbalizing. It's essential to spend one-on-one time with each child and time together as a family that isn't focused on CHD.

 

Educating the school and others: Sending their child with CHD to school can pose challenges for parents. Not only is avoiding major illnesses a cause for concern, but educating school staff about CHD and their child's limitations can also be challenging. In some cases, parents find it helpful to get everyone together to work with their child to understand the condition or defect.

 

Living with persistent uncertainty: Even if a child doesn't need any more medical procedures, there will always be appointments that will inevitably bring up some old memories. As children grow older, it's also instinctive for parents to fear the inherent risks of CHD and their child's lifelong care. The journey is never over, so support can make a massive difference in these parents' lives.

 

Relating to other parents of children with a CHD: Parents and relatives are encouraged to connect with others who also have a child in their family with a heart defect. Other caregivers, for example, can provide a dependable model of how to cope positively with these exceptional life circumstances.

 

Talking with a  mental health professional

 

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

 

According to research conducted by NCBI, families may be helped by early interventions to alleviate stress and reduce children's emotional and behavioral issues. It's suggested that medical professionals check in with parents during routine checkups regarding stress, family functioning, psychosocial functioning of the family and child. 

 

Takeaway

 

Being the parent of a child diagnosed with CHD can be overwhelming, stressful, and in some cases, painful to cope with. However, some families have seen a silver lining in having a family member with a complex medical condition like CHD. 

 

For example, siblings can learn to be more resilient, in which they are demonstrating increased compassion and greater affection for life. Many parents' outlook on life can change, and they appreciate the "little things in life" that much more.

 

Resources

https://mendedhearts.org/wp-content/uploads/2017/03/MLHGuide-Lite.pdf

 

https://www.achaheart.org/media/1521/lifelong-care-bro-child-2016_final.pdf

Keywords: CHD, congenital heart disease


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