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.
https://youtu.be/UoodTQL6IJc?list=PLoIs_Tx7jNgQuKta-edkjI1kVSiymR8Gc
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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