Heart Talks: Understanding the stages involved in having a child with a congenital heart defect. - Blog

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Heart Talks: Understanding the stages involved in having a child with a congenital heart defect.

February 20, 2023 | Contributed by Preeti Kumar

Last week, February 7-14th, was globally observed as the Congenital Heart Defect(CHD) Awareness week. The focus of this week is to honour families who have children born with a congenital heart defect and at the same time raise awareness about the condition. Raising awareness is important because not only are most people unaware of CHD, but the more awareness we raise, the more likely it is to lead to timely diagnosis and a timely child heart treatment. Increased awareness also is likely to influence more funding into research for CHD treatment. It is also likely to help divert CSR funds towards NGOs for heart treatment, that are working to make a difference in this area.

Last week, as part of the many efforts we undertook to build and increase this awareness, we produced a video series called Heart Talks – a 4-part series that looks at different stages of CHD right from early detection during the pregnancy, to preparing to deliver a child who has been diagnosed with a CHD, to living with a CHD.

This Blog briefly encapsulates the essence of the 4 videos during the 4 critical stages:

1. Early Detection and Screening: Congenital heart defects account for 1/3rd of all birth defects – that is a huge number. While there are no known causes of a baby being born with a congenital heart defect, there are number of things that can increase the risk of having a child with one. Some genetic conditions, for example, predispose a child to being born with a CHD. 50% of children who have Down Syndrome, for example, also have a CHD. Turner’s Syndrome is another condition that usually affects females and includes CHD in it’s spectrum. Abnormal insulin levels of the mother can also impact the development of the heart of the foetus. Smoking, consuming alcohol, eating certain medicines such as Isotopes can also impact the heart of the foetus. Infections such as Rubella and measles can predispose the foetus from developing a CHD. All the above should be looked at during pregnancy to minimise the risk of the child being born with a heart defect. In addition, screening during pregnancy must be done to check for the normal functioning of the foetus’s heart. Between 5-6 weeks of the pregnancy, the heart rate and rhythm should be checked to ensure that heart rate of the foetus should be between 120-180 beats per minute and the rhythm should be regular. At 20 weeks a detailed structural ultrasound should look at the development of the heart and at 22-24 weeks a foetal echocardiogram should be done to assess any defects in the baby’s heart.

2. Pregnancy and Childbirth after the foetus is diagnosed with a heart defect: Once a foetus has been diagnosed with a heart defect, it is important to prepare for a healthy pregnancy. It is critical for parents to understand that the foetus being diagnosed with a heart defect is not due to anyone’s fault. It is important to focus on a healthy pregnancy to ensure that the child born is healthy. In an ideal situation, in cases where the heart defect is severe, the child should be delivered in a facility which also has a a pediatric cardiac care center to look after the baby right after birth. Where that is not possible, the delivery should take place near a facility with a pediatric cardiac care set up so that the child can be taken immediately for the child heart treatment that is needed. In some cases, families need help to arrange the logistics and finances. These families should connect with organisations like NGO for heart treatment to get the necessary assistance.

3. Looking after a child born with a heart defect: managing a child born with a heart defect can sometimes be challenging. In the event a child who has a heart defect, falls unwell, it is important to adhere to the treatment protocols and remain in touch with the team of doctors. The pediatric cardiologist and pediatrician should function as a team, guiding the family at every stage with the child’s growth and development.

4. Living with a CHD: Congenital heart defects are of different types and how they impact the child and the family long term depend on the type of defect. Children with milder defects do well and go on to live their life almost like their peers. Children born with critical heart defects, however, need lifelong support. It is important to look at the children not only from the lens of the heart defect but as a whole and focus on their overall development that includes their nutrition, their performance at school their emotional wellbeing etc. The neurodevelopment of the children born with a heart defect should be checked at every stage of growth.

A timely diagnosis and child heart treatment can help many children live a near normal life. Children born with critical defects will need long term hand holding and it is important to ensure that these children have the right ecosystem to be able to grow and thrive. It is essential to talk about this most commonly occurring condition and spread the awareness so that people when faced with this challenge know exactly what needs to be done and where they can reach out for help. NGOs for heart treatment are doing a lot of work here to build and spread awareness regarding congenital heart defects.

Share this blog and help us spread the awareness as every child deserves a chance at life as #HarDilDhadaknaChahe

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