Light at the End of the Tunnel

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. Our first son, Steve, was four years old then. Little did we realize that the joy of welcoming a new member into our family would be short-lived. Life gave us a rude shock when we discovered that Ken was born with a complex congenital heart disease. The trauma of this discovery was compounded by a delayed diagnosis and the events leading up to it.

Early Signs and Missed Warnings

On the second day after Ken’s birth, we noticed an unusually purplish tinge in his feet. We brought this to the attention of the Neonatal Care Chief during his regular ward rounds. He dismissed our concern, remarking that mothers often become paranoid over trivial matters.

Life went on for the next five months. Ken had difficulty feeding and cried frequently for no apparent reason—things I assumed were normal for newborns. However, when he began missing developmental milestones, we grew anxious. Doctors reassured us, saying that some male children develop more slowly. During Ken’s fifth-month vaccination visit, however, a junior doctor noticed a bluish discoloration on his fingernails.

That very day, tests revealed that the oxygen saturation in his blood was below normal. This raised serious concerns among the pediatricians, and a series of tests followed—each bringing us closer to what we dreaded hearing.

A Diagnosis That Changed Everything

The final diagnosis confirmed our fears: Ken had a complex heart condition known as TGA (Transposition of the Great Arteries), along with several other deformities. I was devastated and desperately hoped the doctors were wrong.

“I will never forget the moment when the doctor bluntly told me that my son would not live.”

We rushed Ken to Chennai, to one of India’s leading pediatric cardiac care centers. The specialists there explained that his condition could have been surgically corrected almost completely had he been brought in within the first month of birth. I was shattered. Anger consumed me as I recalled how casually the neonatal specialist had dismissed our initial concerns.

Anger, Grief, and a Crisis of Faith

My anger soon turned toward God. Why had He allowed this? I had already endured a difficult childhood, including the loss of my schizophrenic brother at a young age. I lost my faith in the God I had trusted all my life.

Around that time, I came across a Bible verse that said children are a gift from God. It made me pause and reflect.

“I had two options—either I could fight and be angry with God and miss out on my life, my children, and my husband, or I could be thankful for every day of Ken’s life and rejoice in his milestones whenever they happened.”

Choosing Gratitude Over Bitterness

I chose the latter. Thus began a new way of living with Ken and my family—a decision I have never regretted. Whenever Ken asked me to play, I dropped everything to be with him. I clung to God for strength during this season.

Ken underwent his first surgery at five months old and a second at one and a half years. Though I feared the worst, both surgeries went well. After the second surgery, his health improved remarkably. He became active, playful, and cheerful. Doctors told us he would need another surgery later in childhood.

Loving Deeply Under the Shadow of Loss

When Ken was three, doctors advised another surgery sooner than expected. It was a painful time. Our bond grew stronger, yet my heart constantly whispered:

“God, how long will I have him?”

I would watch him sleep and pray instinctively, “God, please have mercy on him.” God’s plan, however, was different—not what I desired, but something I later understood was best.

The Final Surgery

The third surgery was scheduled just four days before Ken’s fourth birthday. Though young, he asked many questions, and I explained everything in ways he could understand. From the day he was admitted, a cloud of heaviness settled over me. As the doctors explained the risks, the room felt as though it were spinning.

My husband became my pillar of strength. Complications began hours after surgery. On the second day, Ken slipped into a coma. One by one, his vital systems began to fail. We spent hours in the hospital chapel, clinging to prayer.

“In all things God works for the good of those who love Him, who have been called according to His purpose.”

Saying Goodbye

On the ninth day after surgery, Ken passed away. I felt numb. After the funeral, we returned to Bangalore—and that is when reality truly hit.

No more laughter. No more playtime. No more bedtime stories. My world collapsed.

I felt as though a part of me had been torn away. Every morning began with looking at Ken’s photographs. Friends and family surrounded us with love, and my husband supported me tirelessly.

Helping a Child Grieve

Steve, only eight years old, struggled deeply. His grief surfaced through anger and tantrums. With the help of a child psychologist, we began healing sessions—looking through family photos, remembering happy moments with Ken.

Healing came slowly, through both laughter and tears.

From Pain to Purpose

Slowly, I began to come to terms with my loss. I thanked God for Ken’s four precious years—for every single day of his life. This gratitude protected me from depression and helped me see how God had prepared me to endure this loss.

I developed a deep understanding of pain and found myself naturally drawn to those who were hurting. I became a better listener, a safe place for others to share their grief.

People often told me that conversations with me helped them heal. That is when I sensed a calling—to walk alongside people in their darkest moments.

The “good” God worked in my life extended beyond my family and reached others in pain.