Failure to Thrive

Ecstatically pregnant with twins to begin with, we were subdued a little at 10 weeks when we were told that one twin did not have a heart beat. The rest of my pregnancy proceeded without much ado except for the usual temperamental ups and downs which was kindly attributed to hormones by my husband. This was our first baby. I enjoyed the tiny movements I felt inside me and we could see that the baby clearly responding to loud thumping music.

The expected date of delivery came and went, and the baby showed no signs of coming. 2 days later, the doctor said she would induce delivery. That night my water broke. However, there was still no pain. Finally after a whole day of waiting and the pain inducer affecting my head more than my delivery, we finally decided to go in for a C-Section. It turned out that was one of the first good things that happened to little Arijit, a bright pink baby boy whose eyes sparkled with amusement. He had some jaundice from which he recovered soon enough and we went home with the baby. I settled down to enjoy the rest of my maternity leave with him.

Our second visit to the pediatrician, when Arijit was a month old was when I felt the first sense of foreboding. The baby had just gained a hundred grams. Subsequent visits grew more and more alarming. The baby was simply not gaining weight! His other milestones were OK though, he turned around at the right age, he smiled radiantly when he was a little under two months and was a frightfully friendly baby though tiny.

We changed the pediatricians and took him for a round of blood tests. Because he was so tiny the whole procedure was a sheer torture for me to witness. I consulted doctors across the globe who told me that this was “Failure to thrive” and asked me a list of questions. They always asked how active he was. And I had to honestly say he was extremely active. By this time 6 months, and unable to sit because of his lack of weight, nothing stopped him from whirling around the house in his walker.

He was a thoroughly enjoyable kid, except for the fact that my heart sank whenever I heard someone say,” Why is he so small?” I became obsessive about his gaining weight.

When he was about 7 months old he came down with high fever and a racking cough. That was when the pediatrician decided to refer us to his ‘guru’. That was the second good thing that happened to Arijit. We took a fretful Arijit to see Dr. Bhargav who took one look at him and said “ I hope we are not too late” A series of X rays and tests were organized and the X ray revealed that he had a congenital heart defect. The defect by itself was not complicated but the fact that it was diagnosed late and he was so terribly underweight could be fatal we were told. He weighed about 4.6 kgs. ( approx 9 pounds) at 7 months of age.

Somehow, despite our best intentions to give him the only the best, none of the earlier pediatricians were able to diagnose the real cause for his lack of growth. Since he had one ASD and two VSDs his heart was pumping away furiously. This was consuming calories. He needed to be on a high fat diet. And surgery was the only way out.

It did not even take us a day to decide to go for the surgery. The only delay was in arranging the funds. The doctors also wanted to wait to see if the high fat diet would help him gain weight.

In the meantime, I found myself getting extremely superstitious and looking for signs from God. Mostly begging for my son’s life and sometimes raging at Him, I asked the inevitable “Why us?” question several times. One night I was lying in bed next to Arijit despairing with my eyes closed, I felt some gentle comforting touches on my cheek. I opened my eyes to see little Arijit comforting me with a smile.

From that day on, I resolved not to despair. I told everybody who came to sympathize that Arijit needed their good wishes not their sympathy because he was going to be just fine. I saw more concern in people’s eyes, but I just kept that moment with Arijit in front of me and strengthened my resolve.

There are other pictures which are clearly etched in my mind. My husband had a very man to man relationship with Arijit. He was in a constant stage of denial when we investigating the cause of his failure to thrive. He strongly believed that the boy would simply shoot up one day and there was nothing to be worried about. One day shortly after we came to know, I caught him quickly snatch the baby bring him up close to his face and give him a very emotional kiss on his heart.

Meanwhile, things seemed to be getting worse. Arijit kept contracting minor ailments all of which kept pushing the date of his surgery backwards. He had the conjunctivitis, which though a minor ailment apparently has serious post operative complications. Finally when he was through with his infections, dengue broke out in the city. We went ahead with the surgery despite the dengue.

I was in the hospital with him for his pre-checks. I stayed awake looking at him every night. He was so happy to have me to himself, and kept gurgling to express his appreciation.

October 3rd 1996 was the date scheduled for the surgery. The previous night, the surgeon had come in and educated me about the risk …25% rate of risk given his low body weight. The anesthetist had come and gone telling me how they would gently put him to sleep. It was easily the worst night of my life.

My baby actually went in cheerfully with the band of green masked surgeons not in the least terrorized by their appearance. I quickly sat down to gather myself before going down to meet the concerned band of relatives and friends who had gathered to wish my son well.

Looking at the concerned faces did not help. Especially pitiful were the expression of my parents who looked after Arijit when I went to work. I paced up and down and was grateful to be joined by my friend from many years in my pacing. We talked as we paced of things other than Arijit and the operation.

The surgery was scheduled for 3 hours. There was one moment of sheer agony when our name was called one hour through the surgery. It turned out they wanted some donors for B+ve blood group. When it was almost 3 hours, my husband could wait no longer. The announcement for the parents of Arijit came almost on the dot and we went in to see our son in the recovery room. We had been warned before, but it was still a shock to witness the tiny body with 18 tubes running through almost every organ of the body. The operation had gone off without event, we were told, but he would be in Intensive Care for sometime under close observation.

This was not the end of our torturous journey. Now relegated to wait in the reception, we shared our experience with other parents with similar plights.. sometimes worse.

I did the day shift and my husband the night. The first night when we were changing shifts we were horrified to hear loud wails. From a mother who had brought in a blue baby. She did not want the child to be cut open and operated. The second night, the hospital lost a baby. There were no wails, but intensive pain in the eyes of the parents. The baby had contracted dengue. These were times we felt selfish to hold on to hope for our son who had the highest risk of them all.

Then there was little Baby More, who had flown down immediately after birth with her father. She was hooked on to the artificial respirator and would valiantly try to suck her thumb through it all. When her mom had recovered enough to travel to her, she went in with me to see her baby. The baby used to be opposite Arijit. Since the last visit, she was shifted next to Arijit. The mom was obviously told to go to the baby opposite, so she went and stood by the wrong baby. I went by Arijit and did my customary talk about his being strong and a hero and coming home soon. I did this every time I went in. By the time I noticed, some of our time had lapsed. I led the mother to the right baby.

When Arijit was conscious, the third day after surgery, the doctors asked me to talk to him. As soon as I opened my mask, Arijit went berserk. He tried to get up, wanted to be picked up and started crying. I was sent away. I did not go in to see him for 2 days after that for fear of upsetting him. There cannot be a worse punishment for a mother. All he wanted was to be picked up and be comforted. But because he was bound to so many life-saving machines, I could not do that.
When they finally shifted him out of the Intensive Care into a room, both of us were pretty cranky. The nurses came in every 8 hours to pump the excess fluid from his lungs and Arijit hated it.

After 13 days, which seemed like 13 months, we were told that Arijit was ready to be discharged.

When we took him home and he sat in his walker, life seemed to be complete. We slept that night like we had not for many nights, no nurses coming in to wake him up. In the next one week he had gained 500 gms( 1 pound) and he kept making progress. Soon he was sitting up and then crawling and 6 months after the surgery, we were told we did not have to visit the hospital for the next one year. He was thriving.

9 years today, Arijit thrives. Still small for his age, he is great at computers. He is best at negotiating though and can work his way through the toughest deals. We land up poorer every time we get into a deal with him; but we are richer for having this wiry fighter in our lives.