Understanding Congenital Heart Disease: Causes, Symptoms, and Treatments

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Congenital heart defects refer to defects in the heart that children are born with. These are one of the most common congenital defects globally. In India too, 200,000+ children are born with a congenital heart defect (CHD). These are the numbers of the cases that are recorded – there maybe many more which go undiagnosed and hence untreated. Only 25 per cent of the children diagnosed with a congenital heart defect are able to get the required treatment. A lack of awareness and access to resources are the biggest challenges in children getting timely treatment. Organisations like Genesis Foundation, a congenital heart foundation India has been taking steps to both build awareness and provide financial treatment to those who cannot afford the cost of treatment. The treatment for CHD is expensive and families that do not earn enough to meet their daily needs have to depend on funds they receive as a congenital heart disease donation to support the treatment. Symptoms of Congenital Heart
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Psychosocial Aspects of Congenital Heart Defect Treatment: Supporting Patients and Families

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Congenital heart defects (CHDs) are a group of structural abnormalities in the heart that are present at birth. They are among the most prevalent birth abnormalities, affecting around 1 in 100 infants. As one can imagine, since this condition affects children from birth, the parents and the child go through a lot of challenges – medical, financial, emotional, psychological, social and many more.

A diagnosis and timely congenital heart defect treatment can give most of these children a chance to live a near normal life. However, the journey is difficult, and these families need a lot of emotional and psychological support to stay strong.

Congenital Heart Disease Treatment frequently includes surgical procedures, drugs, and continuing medical attention. Going through a medical diagnosis, accepting that their child has a defect in the heart is by no means easy. To add to that going through the medical procedure with their young child is emotionally overwhelming for any parent.  The treatment for congenital heart defects, therefore, must be interdisciplinary to cover patients' and their families' medical and emotional requirements.

Some of the Psychosocial Challenges Faced by Parents of Children Who Have Congenital Heart Defects:  

1)   Acceptance: Accepting that their child has a defect in the heart is often one of the toughest parts for parents of children with a congenital heart defect. Many emotions arise ranging from guilt, anger, frustration, despair that are very often left unaddressed as parents throw themselves into dealing with the situation at hand. Addressing some of these issues is critical for parents to not spiral down emotionally themselves

2)   Medical Challenges: Congenital heart defect treatment has evolved in the recent years with most children being able to get a chance to live a near normal life. However, identifying the right doctor, the exact defect the child has, the best treatment option can be extremely daunting. In cases of families which struggle to make their daily ends meet, accessing and comprehending such information can be extremely nerve wrecking.


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3)   Financial Challenges: Congenital heart disease treatment is expensive. In India, most of the pediatric cardiac care centers equipped to deal with such children are in Tier I and Tier II cities and that too in the private sector where the cost of treatment is expensive. For underprivileged families this leads to huge mental stress. The parents are thrown into a whirlwind of trying to save their child and staring at closed door as they so not know how they will organize the funds.

In light of the above patients and families of children born with a congenital heart defect, it is critical to provide them with psychosocial support. Some of the ways this can be done are:

 

1)   Counselling families and children: Counselling families and children diagnosed with a congenital heart defect is a good way of equipping them with the information they need to steer through their medical journey. The counselling sessions should include information about the diagnosis, the treatment and the prognosis. The child should also be counselled on what the treatment and the healing process will entail.

2)   Financial support: Providing financial support, especially to families who do not have access to the same can be a big help. NGOs like Genesis Foundation provide financial help for the congenital heart defect treatment of underprivileged children across the country. The Foundation has supported 4200+ children suffering from critical medical illness since it’s inception.

3)   Information: One of the best ways to support families and children on this journey is to empower them with the right information so they know what to expect and what not to.

4)   Connect with other Families: Speaking and interacting with other families who have been in a similar situation is great way to offer support to families. Hospitals and NGOs working in this area can connect families where they can exchange information, experiences and concerns.

Providing complete care for patients and their families requires consideration of the psychological components of congenital heart disease treatment. Genesis Foundation, an NGO that facilitates the medical treatment of underprivileged children born with a congenital heart defect, is aware of how important it is to meet the emotional, social, and psychological requirements of those who have congenital heart disease. To read more about their work visit www.geensis-foundation.net.

 

Citations:

1.   “Congenital Heart Defect Facts.” Www.childrensheartfoundation.org, www.childrensheartfoundation.org/about-chds/.

2.   Conqueringchd.org, 2023, www.conqueringchd.org/learn/facts-statistics/.

3.   ‌ “Congenital Heart Defects.” Www.aap.org, www.aap.org/en/patient-care/congenital-heart-defects/.

4.   “The Impact of Congenital Heart Defects.” Www.heart.org, 2019, www.heart.org/en/health-topics/congenital-heart-defects/the-impact-of-congenital-heart-defects.

5.   Mayo Clinic. “Congenital Heart Defects in Children - Symptoms and Causes.” Mayo Clinic, 2018, www.mayoclinic.org/diseases-conditions/congenital-heart-defects-children/symptoms-causes/syc-20350074.

6.   “Learning and Educational Needs for Children and Young Adults with Heart Defects | NCBDDD | CDC.” Www.cdc.gov, 25 Jan. 2022, www.cdc.gov/ncbddd/heartdefects/learning-and-educational-needs.html.

7.   “Congenital Heart Defects.” Medlineplus.gov, https://medlineplus.gov/congenitalheartdefects.html#cat_77.

8.   “Challenges Faced by Parents of Children with Congenital Heart Disease.” HealthyChildren.org, 2019, www.healthychildren.org/English/health-issues/conditions/heart/Pages/Challenges-Faced-by-Parents-of-Children-with-Congenital-Heart-Disease.aspx.

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