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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Stories of Courage: Priyansh Amit

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 The current pandemic of the novel coronavirus (COVID-19) is a difficult time for everyone. This has rapidly affected our day to day life, business, employment and overall presents an unprecedented challenge to public health. But amid a disconcerting pandemic on 3rd December 2020, Amit and Priyanka, residents from Palghar, Maharashtra were over the moon as their little bundle of joy arrived at 11.30 pm. The baby boy was delivered at Rural Hospital in a city called Mahad (their hometown) in Raigad district.

The family’s happiness knew no bounds as Amit’s parents began calling everyone to give them the good news and sent pictures of the little one. Then everything changed after a month when their son, Priyanshatonly six and a half weeks old, struggled to drink milk and suffered from reflux. He would be sick after each feed and was barely gaining any weight.Priyansh’s condition wasn’t picked up at ante-natal scans or soon after birth and now his condition was a growing concern for both his parents. Over the next few weeks,Priyansh’s condition got worsened and Amit took his son to a clinic for the first time as they were anxious aboutPriyansh being sleepy and refusing feeds. It was the end of January 2021.

 


The doctor examined their child and found something wrong with his heart. Amit was asked to show his son to a child specialist, meanwhile, Priyansh was given medication for stabilization. Amit returned back home with his son, until this time, Amit had no clue about what lay ahead for him and his family. Priyanka started the medication routine for Priyansh as advised by the doctor. But even after a couple of weeks, Priyanshcontinued to be sick, and his weight gain was still minimal.

 This worried both Priyanka and Amit and they booked their tickets for Palghar and decided to show their son to a pediatrician. In February 2021,Priyansh was examined by the pediatrician who noticed his struggle to breathe and could see his ribs sucking inwards. After examination, the doctor suspected Priyansh to have a Congenital Heart Defect. Priyanka and Amit was immediately referred to Jupiter Hospital in Pune for further medical investigations. The treating doctor helped the family in arranging a vehicle for transporting the baby and it took them four hours to reach Pune. Priyanka and Amit left for Pune early in the morning and this seemed like the longest ride, not because they were going slow, but because their world had flipped upside-down. As soon as Amit and his wife Priyanka reached the hospital, the doctor on duty conducted Priyansh’s first Echocardiography. Priyansh’s grandparents weren’t allowed to accompany them because of coronavirus restrictions.

At Jupiter Hospital, the doctors diagnosed Priyansh with Ventricular Septal Defect (VSD). VSD is a hole present in the wall that separates the lower chambers of the heart. The bottom line, Priyansh required an open-heart surgery to live.

 For Priyanka, it felt like the ground beneath her feet collapsed and a deep fear enveloped her mind, and she was worried for her child. Priyanka said “I will never forget that day when my sweet baby boy was diagnosed with VSD and would need an open-heart surgery before six months of age. It was devastating.”Amit was also in shock as he was unable to support an open-heart surgery with an earning of just Rs 12,000 a month as a salesman in a private company. But the doctor counseled the parents and explained to them the need for it. Since Priyansh had low body weight, he has again prescribed medicines, and the parents were asked to come after a month for review.



After a month in April 2021, when Priyansh was four months old, the parents returned back for review. “When we got there, it seemed like every screening test being performed on Priyansh was extremely traumatic for both him and us”- said Amit.Priyansh was taken for his surgery on 20th April 2021, but before that he required to undergo a COVID test which thankfully came negative. Then Amit was worried about the funding and he was looking for an NGO for heart treatment in Mumbai and found Genesis Foundation. After that, Priyanshunderwent a successful Surgical Closure of Ventricular Septal Defect and after a few days, Priyansh moved from the intensive care unit to another ward. Six days after his open-heart surgery, Amit was able to take Priyansh home. SeeingPriyansh post-operative was a sight for them. To imagine at such a young age, he could go through this was beyond comprehension. But what was more amazing, was how quickly he bounced back from his surgery.

By this time, he was crawling around and pulling himself up on things. Priyanka and Amit were amazed by his strength and determination.Priyansh is the beat of their hearts and makes them prouder every day. Priyanka and Amit are thankful to be home and spending quality time together, watching their son grow and learn.

 

Genesis Foundation is an NGO for heart treatment in Mumbai, though their office is in Gurgaon. They support the surgeries of children with Congenital Heart Defects pan-India. You can reach out to them by visiting their website www.genesis-foundation.net

-Contributed by Arti Barwa

Location: Gurugram, Haryana, India

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