Cover Story: Light at the end of the

Light at the end of the

My world came crashing down when I discovered that my son was born with a congenital heart disease and had only a few years to live. How could God have allowed this to happen?

It was June 1996 when our second son, Ken, was born. Steve, our first son, was 4 years old then. Little did we realize that the joy of a new addition to the family would not last for long. Life gave us a rude shock when we discovered that Ken was born with a congenital heart disease of a complex nature. The trauma of the discovery was even more painful due to delayed diagnosis and events that led to it. On the second day of Ken’s birth, we noticed his feet had an unusually purplish tinge. We drew this to the attention of the Neo-Natal Care Chief during his regular rounds to the wards.

He rubbished this by saying that mothers get paranoid for silly reasons. Life carried on for the next five months; Ken had difficulty taking feeds, crying for no apparent reason, things that I thought were normal for newborns. But it was when he started missing developmental milestones that we became a little anxious. Doctors told us that some male children show slowness in development. When we took Ken to the hospital for his fifth month vaccination, a junior doctor noticed the bluish discolouration on his finger nails.

That day itself they found that the oxygen saturation in his blood was below normal. This raised the suspicion of the paediatricians and a battery of tests followed – each one taking us closer to what we did not want to hear. The final test confirmed what we feared; he was diagnosed of a complex heart condition known as TGA (Transposition of Great Arteries) along with a few other deformities. I was devastated. I hoped and wished the doctors were wrong.

I will always remember the moment when I was gripped with an intense sadness as the doctor who did the Echocardiogram, bluntly told me that my son would not live.

We took Ken immediately to Chennai to one of India’s leading medical centres known for paediatric cardiac care. The specialists there told us that it would have been possible for Ken’s heart condition to be surgically corrected in a near-total form, had we brought him within the first month of his birth. I was shattered. I was so angry as I remembered the way the neo-natal specialist had just blatantly disregarded our concerns. Images of him standing at the door of my hospital room and refusing to even come inside for taking a look at my baby’s feet enraged me.

My anger then turned towards God. How could he have allowed this to happen? Why me? I had had a difficult childhood already with a schizophrenic brother who had died at a young age. How could He be so cruel to me? I lost all faith in God who I had trusted in all my life. across a verse in the Bible that said that children are a gift from God. That made me think –

“I had two options before me – either I can fight and be angry with God and miss out on my life, kids and husband, or, I can be thankful for every day of Ken’s life; play with him; and rejoice over his milestones when they do happen.”

I decided on the latter and thus began a new life with Ken and my family. I have never regretted that decision. Now as I look back, I have only fond memories of Ken which brings both tears and smiles to me. There were times when Ken called me to play with him and I would stop everything I was doing at that point in time, to be with him. Never has there been a day when I thought I should have done this or that with him. I clung on to God too for His strength to go through this period.

Ken had his first surgery when he was 5 months old and a second when he was 1.5 years old. Everything went on well although I feared the worst. After the second surgery there was remarkable improvement in his health. He was very active, playful and cheerful. The doctors told us that he would need another surgery when he was 8 to 10 years old. In the meanwhile we were to take him for medical check-ups every six months. During one such examination, when Ken was 3 years old, doctors felt he would need another surgery soon. It was a very painful period.

Ken was growing up as an adorable, loving, brat. The bond between us was growing stronger and stronger and there was always a tug in my heart; “God, how long will I have him with me? How are my husband and Steve going to take it if something happens to Ken?” There were times when I would watch him sleeping peacefully, without a care and my mind would connect with God spontaneously to pray, “God, please have mercy on him”. But God’s plan was different. It may not have been the one I had desired, but something that is good for us and Ken, which I came to realize later.

The third surgery was scheduled four days before Ken’s fourth birthday. As a four-year old, he had a lot of questions and in every possible way he could understand, I explained to him about the surgery. I told him that he would be away from me for a while (in the ICU) but there would be others who would take care of him well, and so on. He was hesitant at first, but later, agreed! From the day he was admitted, a cloud of gloom settled on me. I remember when the doctor was explaining to us the procedure and its risks, I felt like the whole room was spinning.

I could hear only words and had difficulty comprehending what they really meant. During that time my husband, who was mentally and spiritually stronger, was my pillar. Complications started a few hours after his surgery. He went into coma on the second day. One by one his life systems were failing. My husband and I clung on to each other. Sometimes we used to go and sit in the hospital chapel to pray. More than once I chanced upon a verse in the Bible, which goes like this: “…in all things God works for the good of those who love Him, who have been called according to His purpose”. Strangely, my husband too came across the same verse.

On the ninth day after the surgery, Ken passed away. I felt numb inside. Everything moved very fast from there on. Once the funeral was over and the guests gone, we returned to Bangalore.

That’s when reality hit me! I have lost my son forever; no more of his laughter; no more playing with him; no more feeding and putting him to bed; no more fights to be resolved with Steve; no more of him welcoming Steve when he returns from school… my world came crashing down!

I felt I had lost a part of me. There was no end to the tears. Every morning I would start the day by looking at his pictures. Many friends of mine spent time with me. My husband was there for me through it all and consoled me in every way possible. He came early from work, took leave when I felt very low, and so on. Added to this was the trauma Steve was going through because of the loss of his younger brother. He was 8 years old at that time. He could not express his grief the way adults do. During the funeral, he didn’t cry… but stayed at a distance from everyone around.

We thought perhaps he is not able to comprehend what is going on. We realized later that there was something going on inside of him when he started throwing temper tantrums. During this phase he would hit me and his friends in the neighbourhood. When things seemed to be getting out of control, we took him to a child psychologist who gave some simple, but effective, ways to cope with the problem. He advised us to sit with Steve and browse through family pictures that would allow him to reminiscence the good times he had with Ken.

These sessions involved both laughter and tears. Not before long we could see changes in his behaviour and we knew he was recovering from the trauma.I slowly and steadily began to come to terms with my loss. It wasn’t easy but I tried to think more positively. I praised God for Ken’s four wonderful years – quite literally –for every single day of his life. This, I guess, prevented me from going into depression. I came to realize how God strengthened me and prepared me to go through the loss; He gave me four years to enjoy my son and prepare me for what was to come.

I was thankful that amidst all this, I still had the strength to take care of my family. I was grateful for the support I received from my extended family and friends. This mind-set helped me immensely and I began to feel sort of empowered. I felt I had a deep understanding of what pain is. I noticed that when people shared their problems with me, I was able to connect with them in their pain; I became a good listener and shoulder to cry on. I found that I could empathize with those in pain and genuinely cared for them.

People told me that they felt that their conversations with me felt more real and helped them make positive changes about their feelings when compared to others who tried to help them. I began to see a sense of calling within me to be available to people in their crises. My mind went back to the verse that I came across in the hospital chapel… that the “good” that God works in MY life actually transcends me and my family but includes humanity at large!

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