My Family Wrapped me in love during my pain

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After 4 surgeries including a major heart surgery, Sonal Dua has endured more than any teenager her age can imagine. She shares her childhood memories of growing up with a heart defect with SHEFALI GUPTA, while her surgeon relates the open heart surgery.

My mother says that within hours of my being born she noticed an unusual throbbing on my head, which was the first sign of trouble. I was told I didn’t cry, like normal newborn babies do. Subsequently mom noticed my fingers and lips turning blue. While playing I would often get out of breath and was unable to play for a long time unlike other children. I loved to ride a bicycle but couldn’t.

At first the doctors we visited couldn’t detect the cause. My parents spent a few years just going to and fro visiting countless hospitals. Once it was found I have a defective heart from birth, I was referred to a specialist, Dr Iyer, a pediatric cardiac surgeon presently at Escorts Hospital.

I learn’t that as a result of the defect in my heart, I wasn’t producing adequate blood and needed blood transfusions. Surgery was advised and I remember it even though I was just five. In fact I had two surgeries that year. Another surgery, the third one, took place when I was eight. The biggest one was the eight and a half hour long ‘open heart surgery’ when I was in class seven.

I was fearless and handled all this with determination. Even though I was young I understood what was going on and asked doctors lots of questions. I would take the decisions required on behalf of my parents, whether to go ahead with the operation or not, since I was the person in-charge, even though I’m the baby of the family. We had full faith in the doctors.

My parents were of course traumatized by all these events. They would be in tears just watching me get pricked by needles. Since this could distract doctors, I asked my parents to sit outside or tell them to cheer me up by getting me ice cream. In fact, I would tell them each time I was admitted to the hospital for a surgery to get me toys. They were given a wish list – sometimes teddy bears, a barbie doll, or a kitchen set – and each time I returned home my wishes were met. I still have each of those toys.

The unexpected illness and long treatment put a lot of strain on my family, physically, emotionally and financially as well. The surgery costs were running into lakhs of rupees, and couldn’t be covered by insurance – as I was born with the defect. But you can say God appears from somewhere and helps you. All four of us – my elder brother, father, mother and I – supported each other during those rough years. My father did a lot for me, and I will never forget him for that. Now I’m 20 years old, and I have completed a course in fashion designing and have even won awards at reputed fashion shows. I look forward to earning and looking after my parents well.

Dr Iyer and his entire team have been so great. I remember days spent in the ICU, which were so lonely as my parents couldn’t come, but doctors kept me company. It was my brother’s birthday once when I was in the hospital for a long time, but I was determined to go home to celebrate with him. Doctors knew they couldn’t keep me there even if they tried. Jokes apart, I really am grateful to the doctors for bringing me where I am today. Dr. Iyer says I can now lead a normal life and go on to marry also. I have to ask him though if my heart can take the stress of labour if I had a child…I’m not sure.

If the open heart surgery had not been performed on time I may not have survived or otherwise may have had encountered other problems because of the defective heart. I have scars from the multiple surgeries till date right across the chest (from the open heart), up the shoulder and down on my back till the waist.

It’s been a difficult childhood, up until I was in my teens. But look at me, I’m fine now. And like my brother says, I was the chosen one! Yes I have seen a lot of hardship, but till the time you go through difficult times, you can’t mature.

Dr. Krishna S. Iyer, Director, Pediatric & Congenital Heart Surgery, Escorts Institute & Research Centre, says: Any abnormality in the heart from birth, called congenital heart disease (CHD), can be fatal if not rectified. One in every 100 children born will have a heart defect.

Sonal’s situation was complex. The blood supply to the lungs from her heart was not uniform- she was born with an absent connection between the heart and lungs. The arteries to the lungs (pulmonary arteries) were also small. As a coping mechanism, the body had developed abnormal blood vessels (arteries) going to the lungs, from the main artery to the body (aorta), to reach blood where the heart wasn’t able to. It was a condition called Pulmonary atresia with Ventricular Septal Defect and small pulmonary arteries.

We planned a series of four surgeries, after the parents were told about the diagnosis. The final goal of these surgeries was to have a normal blood circulation going.

We started with the small arteries, because unless arteries grew to normal size they couldn’t cope with the blood flow. It’s like organizing the water piping system in the house: first you have to lay the pipes of the house, and connect them to the main water supply.

A shunt operation was done to increase flow to the small arteries, stimulating them to grow , first to the left lung then to the right lung. When arteries were of reasonable size the abnormal arteries from the aorta were disconnected at the third operation. In the final operation, the hole in her heart (defect in the heart chamber) was closed and an artificial conduit with an inbuilt valve was placed between the right ventricle of the heart and the arteries to the lungs to replace the pulmonary artery that she was born without. At the same time the shunts that had been placed earlier were disconnected.

Basically, the first three surgeries were all to work on the lung blood vessels.
The last operation was the big one: we needed to get into Sonal’s heart. For the open heart, we used the heart lung machine. Aided by artificial circulation, we made the necessary corrections.

These types of problems constitute 5% of all the congenital heart defects. Sonal made some big decisions about her own treatment. She’s very mature for her age, because she has gone through so much. Others in her position would be pessimistic or depressed, but she has a very positive personality.

The entire purpose of the treatment is not just to give a life, but a meaningful life. When you do such multiple procedures, which you can’t predict at the outset, it’s very heartening to see – 20 years hence- everything falling into place and see Sonal do something with the opportunity she was given. She’s a perfect example of what can be achieved with modern day medicine and more importantly with the good upbringing of a well-grounded family.

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