What is the Support Group for Children with Heart Conditions?

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21 February, 2024

What is the Support Group for Children with Heart Conditions?

Congenital heart conditions affect a large percentage of children around the world. While with improvements in medical science, most children born with these defects can today live near normal lives with just one intervention, there is a significant percentage of children who are unable to access these interventions due to a lack of awareness and resources. Timely diagnosis and intervention are the key to ensure that children are given the right support. 

Even in situations where children are able to go through the treatment, the treatment is difficult and challenging for most families. Ranging from trying to find out more about the condition, to understand the prognosis, to navigating financial challenges, many families need help and support to keep  strong on this journey. While not many there a few child heart foundations in India which help provide this support to families in India. 

The support they offer are: 

Financial support: The treatment for congenital heart defects is usually expensive and many parents struggle to meet the cost. This is because the treatment uses sophisticated technologies and equipment. Even those who are able to afford it want more information about the authenticity of the cost being proposed, the available options for insurance, financial support etc. Genesis Foundation is one such Foundation that provides financial support to lesser privileged children born with a congenital heart defect. 

Information: a treatment for congenital heart defects is overwhelming where families need to understand the condition the child has been diagnosed with, the details of the treatment being proposed, they need support with information on nutrition and physical exercise that needs to be followed, details about medication – the list is endless. Many organisations either provide this information or able to connect the families with the right resource persons who would have this information. 

Emotional Support: having to go through a medical treatment for a child is hard and extremely difficult emotionally. From accepting the condition to finding out the right medical help, the journey can be extremely draining. At this time speaking with someone who has been in the same place or who understands what the family and children are going through can provide a big sense of support and help. 

Even though congenital heart defects are one of the most common birth defects, awareness regarding the same is low. Hence, the number of support groups that exist to help such families and children are limited. following are some of the child heart foundations in India which support such children: 

Genesis Foundation: This is an NGO that facilitates the medical treatment of lesser privileged children born with a congenital heart defect. In supporting the children, the Foundation regularly interacts with the families often counselling them and handholding them to help them get through the treatment. They also follow up each child upto 3 years after the treatment to ensure that the child is developing well. The Foundation works through a network of 34+ partner hospitals spread across the country. 

Child Heart Foundation: This is another NGO that builds awareness on congenital heart defects especially around diagnosis. They offer free diagnostic services at the centre in Delhi once a week. They also provide financial support to children diagnosed with a heart defect and who are unable to bear the cost of the treatment. 

Amrita Heart Care Foundation: Conduct and support heart surgeries for needy children who require an intervention. 

The Children’s Heart Foundation: is an international organisation dedicated to advance the diagnosis, treatment, and prevention of congenital heart defects by funding the most promising research. 

Children’s Heart Link: An international organisation dedicated to build local level capacity of pediatric cardiac care through long term partnerships and robust monitoring. 

In addition to these organisations, there are a few Facebook groups that work as a support group for families who have children born with a congenital heart defect. Congenital Heart Disease India is one such Facebook group that functions as an active platform for families and doctors connected with congenital heart defects to interact on. 

In essence there is a great need to build more support groups both for children and families impacted by congenital heart defects that provide both information and emotional support to those in need.