What are the challenges for parents of children with CHD?

​​​​The first expectation from a pregnancy for all parents is a healthy baby. And along with that, there is a mix of emotions ranging from confusion, joy, fear, sadness etc. When any parents are told the news that their child has a heart defect, a can of uncertainties open up.

We are a children heart foundation in India that works towards helping critically ill-underprivileged children who are diagnosed with Congenital Heart Defects. We meet and counsel such parents on an everyday basis.

What are Congenital Heart Defects?

· A congenital heart defect (CHD) is a problem with the structure of the heart. It is present at birth. Congenital heart defects are the most common type of birth defect. The defects can involve the walls of the heart, the valves of the heart, the arteries and veins near the heart.

· It affects 9 out of every 1000 new-borns in India.

· Every year, over 2,20,000 children are diagnosed with CHD in India. Nearly 1,80,000 out of these are born with critical congenital heart defects – ones that require surgery or other medical interventions within the first year of birth to survive. Parents of such children run from pillar to post from one doctor to another, often waiting, hoping and praying by their child’s side for their survival.

· With excellent medical and surgical management of CHD in the past few decades, infants who receive early medical intervention are expected to live a near-normal life.

What are the challenges for parents of children with CHD?

All parents take on the role of caregivers once their children are born. However, parents of children with CHD have to deal with extra challenges.

· Learning specialised parenting skills

Other than the typical stress of adjusting to parent life, when infants with CHD are operated upon, they spend a long time in the Neonatal Intensive Care Unit. Post that their ability to eat is a little compromised and they have to be usually put on a lot more calories to gain healthy weight.

Gaining ample knowledge

It is very important to understand the child’s diagnosis, medication and treatment plan thoroughly. However, it should be from the right sources i.e. a doctor and not off the internet.

Taking extra precautions

Infants and children with CHD might face the issue of a weaker immune system and while other children might recover from simple illnesses like the flu, children with CHD might take longer. It’s better to stay safe and take all the precautions and ensure that children with CHD do not come in contact with anyone who is unwell and through whom they have chances of catching an infection. Having said that, allowing them to live a normal life is equally important for their holistic well-being.

Struggling with financial burden

For a child with CHD, costs for quality medical care are huge. Parents are often over-burdened with private medical care as the waiting lists are long in government health services. Genesis Foundation is a children heart foundation in India that supports families from lesser-privileged families who need support with children and their CHD medical care.

Providing care to other children

Often when parents have a child with CHD, their siblings tend to get neglected due to the focus on one child. It’s a very delicate balance to achieve, but the family should not become only about all things CHD. The siblings also need reassurance about the child who has CHD as well.

The persistence of constant uncertainty

Once a child is diagnosed with CHD, there are follow ups with doctors that might bring up old memories or new fears in the whole family. Lifelong care and attention is a part of bringing up children with CHD.

Life of families after a member is diagnosed with CHD is stressful and in some cases even tragic. But with early medical intervention, life for children can be near-normal and they can experience it like all other kids.