How do you let go?

On December 25, 2008 I was informed by the doctor on duty at the maternity ward at the Sangre Grande hospital that my son had a heart murmur — mere hours after he was born. A second, third and fourth opinion with a general practitioner, a paediatrician and a cardiologist in the days that followed confirmed it.

"Some heart murmurs in children are most times harmless and don't need treatment because they heal on their own," the cardiologist offered when he saw the panic on my face after allowing me to listen to the "whooshing" sound of my newborn's heartbeat with his stethoscope. But that did little to comfort me. Prior to the visit I had done some research and discovered there are two types of heart murmurs — innocent murmurs and abnormal murmurs. Innocent murmurs are common in newborns and children and heal without treatment, abnormal heart murmurs are more serious and are caused by congenital heart disease. What if his wasn't innocent? What if... my mind was racing. The cardiologist referred us to the paediatric cardiology clinic at the Eric Williams Medical Sciences Complex, where #1son and I spent many long days and where he underwent a series of tests, until he was discharged a little over a year later. As it turned out, like him, his murmur was innocent.

But those were difficult months. The worry and fear was real, very similar to what I had seen my aunt Elsie live through many years ago when her son, Brian, had been born with an atrial septal defect, a hole his heart, and had to undergo risky open-heart surgery. Like her, I was constantly checking my son for any signs of blue skin, especially on his fingertips and lips. I listened for shortness of breath and looked out for enlarged neck veins. Many nights I would stay up as he slept just to be sure he was alive, and I guarded his diet religiously. Even after he had been discharged from the clinic I remained vigilant, and even now, at ten, if he complains of the slightest of discomfort in the chest area I schedule a doctor's visit.

When I recently learnt of the plight of baby Israel John, who is one day shy of being a month old today, my heart bled for him and his parents, Jenesis Scoon and Deron John, because I was able to relate to the unsettling fear that their baby could be gone before he had even begun to live. Just like my JJ, his murmur was discovered a few hours after his birth on May 3. Israel, up to press time on Friday, remained warded at the Neonatal Intensive Care Unit at the Port of Spain General Hospital after being diagnosed with hypoplastic left heart syndrome (HLHS), a birth defect that affects normal blood flow through the heart. Babies with HLHS need surgery or other procedures soon after birth, making it a critical congenital heart defect. Israel needs to have a series of surgeries to place valves in his heart in order for him to live. But it comes at a great cost — at least US$250,000 — which his parents are desperately trying to raise. Without it, their only other option will be to take their son home to live out his life of maybe a few days or a few weeks.

I empathise with them and I wish I had the funds to give them. But my empathy can only extend so far. For although I've experienced the pain of watching needles being inserted into my child's little arms and legs to draw blood, lived through the agony of keeping his flailing little body still for an X-ray or ECG while trying to keep his woeful screams to a minimum, and had to fight to keep an otherwise healthy child from wiping the floors of the clinic with his body on the days we were required to be there, at the end of it all the fear of him dying from his heart murmur was not a real possibility, except maybe in my head. He was never required to take any medication nor did he ever have to overnight at the hospital. I don't know what it is like for Scoon and John, and many parent like them, to have to practically live on a hospital ward watching their child struggle with every breath, not knowing which one would be his last. I have no clue how it feels to try to raise life-saving funds for my child, monitoring and counting every cent that comes in, wishing it could magically multiply to reach and surpass the required target. I cannot even fathom the thought of having to consider having to buy a box in which to bury my child even before he found comfort in the crib that was waiting for him at home.

Losing a child through a miscarriage is heart wrenching, I can attest. Delivering a stillborn child must be even more difficult because of the bond that would have been formed during pregnancy. But how does a parent deal with the possibility of having to say goodbye to a baby whose breath they have felt on their face, whose warm, tiny fingers have tightly grasped theirs and refused to let go, into whose little eyes they have stared and seen their own? I have a few friends who were in similar situations. Some believed in a miracle and got it, others believed but didn't. I don't know and will never know why. What I do know is that no matter which way the pendulum swings, life always goes on. Whether our trying situations result in rejoicing or grief, life goes on. Dealing with the emotions of having a critically ill child, I imagine, may be a little more difficult than coping with that of a critically ill parent or grandparent. But I also imagine that a parent will know, and as difficult as it is to accept, when it is time to let go. As British psychologist Henry Ells said, "All the art of living lies in a fine mingling of letting go and holding on.”

Anyone who would like to assist Israel can contact Jenesis Scoon at 312-1185.