Understanding congenital heart disease in babies

By: Jasmine Marfatia

Published On: July 30, 2018

We explore the rise of congenital heart disease in babies and heart attack treatment cost in India.

Parents of children born with congenital heart diseases go through terrible emotional and financial troubles. By receiving financial aid for medical treatment, the financial implications of treating such a condition can be reduced.

We often think of ailments like high cholesterol or high blood pressure as age related or adult health issues. But you’d be surprised to find that most of these conditions that are progressive in nature, actually start at a very early age. 

In fact, so many infants and children today suffer from heart diseases such as congenital heart diseases, kawasaki diseases, atherosclerosis, and so on. The contributing factors include lifestyle related habits, eating disorders, obesity, environmental effects, and genetics. Living with heart diseases, or living with a loved one who suffers from a heart diseases is not easy, but for a child to have heart problems at a young age is tragic in so many ways.Recent studies have indicated that the prevalence of CHD in urban India has jumped from 1% to 10%, and in rural India from 1% to 6%, in the last 60 years alone. 

It is disheartening to find that a large part of the population of sufferers have been infants, newborns, and children. Each year, more children are becoming victims of fatal heart diseases, specifically coronary heart diseases (CHD). For this reason, pediatric cardiology is now increasingly being recognized in India. 

Of all the heart related conditions in children, congenital heart disease is the most prevalent one yet. So let’s get a deeper insight into what it is, and what are its implications.

What is congenital heart disease?

Congenital heart diseases refer to deformities, malformations, or defects in the structure of a child’s heart. The most common heart defect seen in children is ventricular septal defect (33%), followed by atrial septal defect (19%) and tetralogy of Fallot (16%). 

The majority of CHD cases (58%) diagnosed were between 0 and 5 years of age. In fact, treatment for congenital heart diseases is often a part of premature baby treatment and newborn baby care, as it is a common complication of preterm babies. 

Most people know these conditions as holes in the heart, abnormal valves, and abnormal heart chambers. There have been many cases that have gone untreated for years owing to high cost treatments (mainly in low income groups), and caused long term complications. 

This begs the question - could this be prevented if treatment was more accessible by all? This article will discuss various treatments and expenses involved with congenital heart disease, and whether crowdfunding may pave way for practical financial solutions for child healthcare.

Heart attack treatment cost in India: Options available 

  1. Catheterization: This process involves inserting a catheter through a this tube from the leg vein that reaches the heart. This technique fixes holes or narrowed arteries. Catheterization doesn’t require surgical opening, and is therefore preferable. 

  2. Open heart surgery: As the name suggests, the child must undergo a surgery to open the chest and repair/ correct the defect. Owing to the fact that it is a highly invasive surgery, the risk factor along with the medical expense is quite high for sufferers that need this treatment.

  3. Heart transplant: Certain defects that are irreparable and have high risk of causing fatal and/or long term complications cannot be fixed. This means the child would have to undergo heart transplantTransplant procedures too, are highly invasive open heart surgeries, that significantly increases the expense of treatment. 

Role of crowdfunding in pediatric cardiologyFortunately, modern medicine and technology has allowed us to battle these diseases with various medications, and treatments. But there is another challenge to overcome - all these medications and treatments come at very high costs, the kind that most of the Indian population is unable to afford. For example, the atrial septal defect surgery cost in India starts from Rs. 60 lakhs! 

This is why, cardiac diseases in some children go undetected and untreated, and they grow into adults who then have their own children with genetic predisposition to get the same heart diseases. 

The clear solution to this problem is to make treatments for heart disease, especially among children, more accessible to all. As a crowdfunding platform, we at Impact Guru have had a lot of experience in assisting families to get funding for medical treatment, which is why we believe it is a viable solution to ensure treatment for children with heart disease. 

On an average, the cost of an open heart surgery in a private hospital in India would go upto INR 1.5 lakhs to INR 2.5 lakhs. Further, one would also have to account for additional expenses such as postoperative care including hospitalization, medications, tests, follow-ups and consultation charges, and eventually rehabilitation. 

  1. Raise funds not only for open heart surgery, but also for other expenses associated with it - tests, medication, postoperative care, and rehabilitation.

  2. Caregivers and families may raise debt free funds without the burden of paying back with high interest rates.

  3. Starting a fundraiser on platforms such as Impact Guru is free, easy, and quick, taking less than 10 minutes to launch.

  4. Access to a community of philanthropists, donors, survivors of similar diseases, and other well-wishers who are willing to lend financial support.

Here’s how to go about it:

Start a heart crowdfunding campaign on an online fundraising website (it is free to raise funds on some platforms like Impact Guru). Then all you have to do is tell people about your child and the heart disease he/ she is going through. 

Give them details about the treatment needed, and the cost for it. Then make an appeal asking people to donate funds and share your campaign with others. 

By doing so, you’ll be able to reach out to thousands of well-wishers, philanthropists, and communities of people who have been through the same diseases. 

Contributions from them will accumulate and hopefully help you cover the cost of treatment for your baby. 

To give you an idea of the potential of crowdfunding in saving the lives of ailing children, we’d like to share the story of little Keerthisha.On September 24th last year, Madhuri and Kalyan were blessed with a little bundle of joy they named Keerthisha. Their newborn baby Keerthisha was the apple of their eye, and the source of their new world of happiness. 

Imagine their plight when they were given the crippling news that little Keerthisha was born with multiple holes in her heart and PDA (patent ductus arteriosus). 

Their whole world came crashing down within moments. 

It had only been a month since she was born, and for her to go through heart diseases so severe, at such a young age was completely unfair. 

As per the doctor's advice little Keerthisha underwent Patent ductus arteriosus Closure + Pulmonary artery banding surgery at the age of one month, which costed Madhuri and Kalyan INR 4,50,000, an amount well beyond their means. 

Though it was a very turbulent time for them, they struggled, but somehow managed to put together the funds for their baby to get the treatment that would save her life. 

To their greatest relief, the surgery was successful, and some of the holes in her heart were fixed, Keerthisha was saved.

 

It had been 9 months since her surgery, and the time had come for the remaining holes in her heart to be treated. Her second surgery brought on an emotional and financial rollercoaster for her parents, as the hospital had estimated the cost to be around INR 6,51,000. 

They already dug into their savings for the first surgery, which completely depleted them off funds for the second surgery, making it impossible to afford hospital bills, doctor’s fees, medication, and postoperative care. 

To add to their woes, the doctors advised that the surgery should be conducted between 20th - 25th July 2017. Such a short time frame left them with little scope to finds another way to arrange the funds.

When Keerthisha’s parents were told about crowdfunding, they instantly decided to give it a shot, not knowing whether it would work - but this was their only hope. When the campaign went live, they were delighted to see how many people cared for their child and came forward to make donations that would help her get treated and recover. 

They were able to raise more that their target amount well in time for Keerthisha's surgery (who is now well).Heart diseases and cardiac problems are one of the leading medical causes of death among the young and middle aged populations in India, and is now increasing in children too. 

We share this inspiring story of Keerthisha so that more parents gain the courage to adopt alternative methods of raising funds for child medical treatment, such that it is easy to rise and entirely debt-free.

We suggest you also read:

All You Need To Know About Overcoming Open Heart Surgery Costs In India 

Why Parent Should Crowdfund For Premature Baby Treatment

If you have any suggestion or feedback, reach out to us at engage@impactguru.com


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