Embracing Your Beat:
Self-Acceptance and Congenital Heart Defect (CHD)

This April I turned forty-five. As I look back on this four-and-a-half-decade long journey, I am grateful for the amazing array of experiences life has given me. One of the things I’ve always felt made me special, was my congenital heart defect (CHD) condition. I was born with what is clinically known as the Tetralogy of Fallot (TOF), or more commonly, the ‘blue baby’ condition.

This write-up is my reflection on what that meant for me, and to share a few life experiences that might be of help to anyone living with, or bringing up a child with a CHD condition.

Tetralogy of Fallot (TOF) or the ‘Blue Baby’ Condition – What is it?

Tetralogy of Fallot (TOF) is a congenital heart defect (CHD) that affects the structure of the heart. It is a combination of four heart defects that are present at birth:

1. 1. A hole in the heart wall: Known as the Ventricular Septal Defect (VSD), this hole occurs in the wall that separates the two lower chambers of the heart (ventricles).
   2. A misplaced main artery: The main artery that carries oxygen-rich blood from the heart to the body is called the Aorta. In case of TOF, the aorta is shifted to the right and overrides (lies directly above) the VSD.
   3. Narrowing Pulmonary Valve and artery: The Pulmonary Valve (PV) and the artery connects the heart to the lungs. Narrowing of these two (Pulmonary Stenosis), makes it difficult for the blood to flow to the lungs to pick up oxygen.
   4. Thickening of the heart muscle: The thickening of the muscle of the right ventricle, which is the chamber of the heart that pumps blood to the lungs.

A lot of CHD children are born with just one or two of the above heart defects. Unfortunately, I was born with all four, or with TOF.

What happens if a child has TOF?

The combination of these four defects of TOF can lead to a variety of problems. This includes cyanosis (bluish tint to the skin and lips due to lack of oxygen), poor growth and weight gain, shortness of breath, fainting spells, and heart murmurs (due to turbulent blood flow).

In my case, the third point above is something I still need to address and deal with. I was born without a Pulmonary Valve (PV). Since I was a child, the doctor had to put a mesh (instead of a valve) in place, to let the blood flow back into the heart. Over the years, the mesh is now torn. So, what I have as a situation today, is called Free PR (Pulmonary Regurgitation). In the context of cardiology, regurgitation refers to the backward flow of blood through a valve that doesn’t close properly. It is with my family’s support that I went through this surgery at CMC, Vellore in 1984. I was just 4 years old.

Children with TOF usually require surgical intervention (sometime multiple times throughout their lives). Long-term care and careful monitoring are key for such children. Now that I am 45, I need to undergo another surgery to put a Pulmonary Valve (PV) in place of the mesh. This PV will either be a bioprosthetic valve or an animal valve. The longevity of such a valve is ten or fifteen years. So, even if I do get this second surgery done, it will not be the last time that I will need one. Depending on when I get this done, I may need another surgery ten to fifteen years down the line again. So, the last decade has seen me doing my best to undergo lifestyle modifications, to postpone the second surgery as much as possible.

I feel there are two major angles to any person living with a CHD – the family side to it (how the family brings up a CHD child), and the individual side to it (how the individual deals with the physical and emotional experience of living with the condition). Both are equally important.

Bringing up a CHD Child – Notes to parents/caregivers: 

For any parent, having a child living with a CHD or TOF, can be one of the most daunting experiences. The fear of the unknown, the uncertainty, the constant thought of ‘What will happen when I’m not there?‘ almost strangles you constantly. Add to that, the crippling economic challenges, and conflicting societal views regarding how best to bring up your child, creates an immense pressure. To all such people who might be reading this article…I see you. You are not alone.

As a person living with TOF condition, I have two helpful tips for anyone bringing up a CHD child:

1.  Get everyone’s inputs, but bring up your child the way you want to:

When there’s a sick child at home, friends, family, neighbors, basically everyone will come tell you how best to go about it. The ‘Do’s and Don’ts’ list will get longer and more conflicting day by day. This can and will get overwhelming after a point. The only way out – absorb all the inputs you get, but finally take the decision to bring up your child the way you want to.

Until a year after my surgery, I was under a lot of restrictions. I wasn’t supposed to have any salt, and could only have measured water. We were in Delhi those days. Now, imagine how difficult it must have been for a mother to not give water to her thirsty 4-year-old, amidst that scorching Delhi heat. Add to that, there must have been a zillion suggestions from people regarding what to do and not to do. I have this faint memory of my mother dipping cotton in water and moistening my lips whenever I grew too thirsty. She helped me get through it all, in a way she thought was best for me and her.

2.  Educate. Normalize. Communicate – The key to providing the best possible life to a CHD child.

The most crucial caregiving tip to any parent is that – educate yourself about your child’s condition and normalize your kid’s growing up as much as possible. I know this sounds conflicting. “If my kid is not like everyone else, how can he/she grow up like everyone else?” Well, they can. And it’s important that they do.

As difficult as this may sound, I will suggest not to be excessively overprotective, and to not make the CHD condition the centre of your child’s life. Doing this will constantly remind your child about his/her condition. This will achieve nothing apart from transforming your child into an overly anxious and dependent person.

However, this also does not mean that you never talk about it or keep it a secret from your child. It is crucial to eventually communicate to your kid about the condition he/she has. And you, as a parent, are the best person to figure out the right time to do so.

Communicating with your child:

Growing up, I was aware that I had a heart condition. But the best thing about my childhood was that I had no need to reflect on it seriously all the time. It was just something about myself, that I knew as an information. I went about life as usual, like anyone else my age. Looking back, I can only appreciate the importance of my family communicating the right thing, the right way, at the right time. My parents took care not to communicate too ahead of time, too much, or too little. I was aware, but it was never something driving my day-to-day life.

Parity in upbringing:

My parents also continuously strived to give me and my brother the exact same upbringing. In case of siblings, keeping this parity is key for the wholesome emotional development of the CHD child. In my case, both me and my brother left home and went to the same boarding school. This must have been a huge decision for my parents, but one of the best decisions for me. Moving out, studying at a boarding school, living and working abroad, have all helped me live a very normal and regular life.

Living with CHD/TOF as an adult:

Once you are an adult, things change. Your body changes. You start to have health related experiences that are not exactly pleasant. You might also have to undergo more surgeries. In my case, life changed 2012 onwards, and at a drastic pace post 2016.

As a CHD person, it is also very difficult to express such experiences to anyone else. But what is important is to still stay positive, and not let such experiences divert you from living a rich and meaningful life.

The year 2012, and Dr. Egbe’s words

2012 happens to be the year when my TOF condition finally caught up with me. Shortness of breath, erratic high palpitations, sudden black outs, feeling like passing out in the middle of public places, such experiences had become too many. I had to go for a thorough cardiac check-up. It is at Mayo Clinic in Rochester that I met congenital heart specialist Dr. Egbe, a doctor who changed my life.

As I sat across Dr. Egbe that day, upset about my health condition, he told me something that completely changed my life perspective. He said,

“Rahul, you are not a normal child having an abnormal experience. You are an abnormal child, who has lived a normal life till now.”

My memory of myself and my life, right up to that point was that I was a very normal person, living a very normal life. But this perception was completely shattered with Dr. Egbe’s statement. The fact that I was infact NOT like others, was something that dawned on me for the very first time. However, this statement is also what helped me in future to come to terms with my reality, and showed me a path towards dealing with my challenges.

The emotional conflict:

Initially I struggled to accept the fact that I was not like everyone else, and henceforth might not be able to live my life the way I was used to, anymore. In 2016, my palpitations became even more serious, and I was also told that I might need to undergo another surgery within the next 4 years.

Now, at this point, you might ask me, is it not better to bring up CHD children in a not-so-normalized way then? I will still argue against it. Though my memory of normalcy led to an initial conflict in my mind, perhaps it is only because of that memory, that I was internally empowered to continue life in a normal way in future.

Living your best life with a congenital condition – Life Notes from a CHD person

My story might be different than yours. And we are all trying to do the best we can. These are just a few solutions that helped me in my journey:

Mindset Change 

First, mindset is everything. Your thought patterns, your attitude towards life, and your worldview defines the quality of the life you lead. This is where Dr. Egbe’s words helped me comprehend my reality and make that mindset shift. If we come to think of it, it is only our minds that can ‘limit our limitations’.

Body has limits. But life can be limitless

Bodies in their physical forms will always have limitations. This is true for any human being. For example, the body of a sports person might face limitations due to an injury. People also have limitations due to aging if not anything else. In my case, the limitation is because of a heart condition. That’s about the only difference. So, do we stop living for that? The answer is ‘No’.

Since everyone will have physical limitations in some form or the other, at some point in time, let’s just look at life beyond physical limitations, shall we? Try not to make your life about a health condition that you have. Have twenty other important things in your life. Let’s make our lives limitless. I believe your attitude towards life matters more than the condition itself.

Common fears of a CHD person 

Some common anxieties will always be present. My worries have usually been around whether I will need surgery again, or what if I have to live by myself in future without my parents. These anxieties are natural. I do not try to stop myself from thinking them. Neither do I let these drive all my life’s decisions. There will always be days of emotional upheaval. But it is important to still stay positive and get through such days.

Family and friends matter

I cannot emphasize enough the importance of having positive, matured, kind, and constructive people around. Build your chosen family and surround yourself with great friends. In 2016, when I was going through severe health experiences, I had to undergo major lifestyle modifications. It was my group of closest friends who normalized it all, just through conversations, and by just being there for me. I remember we spent evenings just sitting and talking about life. It’s also a time I realized that everyone is dealing with something or the other, with or without CHD.

Gratitude, compassion, and spirituality 

We are all living our own stories, and I can only suggest what has tremendously helped me and turned my life around. It is spirituality. I firmly believe that cultivating gratitude and compassion works as a solution to most of life’s problems. Cultivating gratitude for what I have, instead of focusing on the lack of it. Cultivating compassion towards self and for others. Reading philosophical texts, engaging with spiritually aligned people, meditating regularly, reflecting on my thoughts and behaviors, and introspecting on the kind and quality of life I want to live, have all helped me in accepting the changes in my life and being at peace with it all.

Moderation is key

I usually do a bit of everything in life but in moderation. My suggestion would be to live as normal a life that your health would allow. Take your doctor’s advice. See what all you need to stop and what all you can continue. Remember, life is very thought driven. Pain and suffering will come and go. But whether you are happy or not, depends more on your mindset and thoughts than the actual circumstance you are in.

It’s been a long journey… 

I am forty five now. I still need one or more surgeries. But I am grateful to be living my best life filled with gratitude, compassion, and peace. I do not take my health or time for granted. I know both are finite. I try to live in the moment. I live for ‘now.’ I spend time with my loved ones and engage where I feel I can make a difference.

I still feel very normal, perhaps with some limitations, yet with limitless passion and purpose towards life.

It was 2016 when I was told I need another surgery in the next four years. It has been eight years since then. I like to believe that with my mindset change along with major lifestyle modifications I have been able to keep the surgery at bay, at least for the time being.

I am here to help 

One of my life’s missions is to help children living with CHDs, and to support marginalized families in getting the best treatment for such children. With this aim, I wish to support as many CHD surgeries as the number of years I live on this beautiful planet.

If you are someone living with a CHD, or are a caregiver to a CHD child, or know anyone who might need support, feel free to contact me. I am here to help.

The above is a promise. In the words of a close friend of mine – A promise by a very ‘heartless’ person.

**This article is dedicated to parents of children having CHD, or anyone living with a CHD condition.