We had known for some time of our genetic Thalassemia traits. My wife especially took care of our family’s medical matters.
We had come across the name “Thalassemia” when one sharp (female) doctor at Dubai’s Al-Wasl hospital came down hard on using Iron supplements other doctors prescribed for my child’s Anemia before testing for his bloods’s Iron content. When tests showed Iron levels as “more than sufficient” she went on to the next stage of testing to rule out all possibilities but a genetic malfunction. Brilliant investigative doctor she was. Not assuming anything but the worst-case scenarios until the truth was uncovered. She was the first to tell us, but it never really seemed to matter. We leisurely had 5 more children since then … before being hit with our predicament !
My sixth child “Omar” was born in April 2004. He was 3 months old when I had to leave my family for an extended period of time. His mother contacted me less than a month later to tell me our child was diagnosed with Thalassemia. The world spinned around me. Being away from my child at the time heightened my feelings the more. It made things even worse that I would not see my child or family until December of that year.
My wife was always suspectful with each child, and with Omar’s birth she was even more in fear. She could see something very wrong with the child that others around her dismissed ordinarily. His skin was paler by the day. Lips and flesh seemed to constantly dry up, not from the outside, but as if they were withering from the inside. Everyone around her dismissed it as normal for a baby of that early age to go through such changes. But as she saw no positive progress, only a decline, she consulted a doctor in Bahrain’s governmental “Salmaniya Medical Center”. She picked carefully, for he was not only a pediatrician but also a hematologist (an expert in blood-related issues). The doctor confirmed her fears and it was one of her worst nights. It did not make it any easier to have to tell me such news through her tears while I was away, nor to see my shock and breakdown at hearing it.
Our initial ideas and views of our child’s future were:
- Our child will have a life-threatening disease for as long as he lives, as no cure is (or will be) available for genetic diseases.
- His health will deteriorate to the point his face and body will become completely deformed as each day passes.
- His life span will only be for a few years of utter and intolerable physical and psychological agony for both him and ourselves as parents.
Because time has shown myself and my wife that none of the above is necessarily true, the story does have a happy ending.
But it’s in telling the story that we need to emphasize: some have unfortunately had that sad ending. Our prayers go to them, and our support to their families and loved ones.
That “sad ending” is what we aim to help others avoid, for themselves and their children, through our account of what happened to us since that very first “day of shock”.
Until then … be safe, have hope.
What’s your story ? And as a parent, what was your “day of shock” like ?
Tell us – and the world – with a comment by clicking the “Add a comment” link below.
