There are thousands upon thousands of stories at Sainte-Justine. Some are happier than others to write about, but they’re all worth telling. With her eyes brimming with love and her heart full of courage, Lamyaa describes how she and her husband have learned how to live day by day with a child who has a life-threatening heart defect.
Lamyaa was 29 weeks pregnant when she received the diagnosis from Sainte-Justine. Her baby had a complex heart defect: a severe case of hypoplastic left heart syndrome.
My world came crashing down. As I was trying to wrap my head around words that didn’t make any sense to me, my only wish was to find out what options were available to my child to give them the best possible life.
The only avenue that would be open to Adam was an intensive series of heart surgeries. But they would have to wait until he was born to find out if he was strong enough to withstand them. That’s when his parents started living life one day at a time.
Adam came into the world on January 12, 2017. Against all odds, the birth was a natural one at full term.
I was able to hold my son in my arms for 30 seconds before the doctors took him to the NICU. He was beautiful and pink – the picture of health. That gave me courage and hope.
At only eight days old, Adam had his first operation. It went smoothly. He was discharged from the hospital after a month and a half.
Adam’s first three months at home were bliss. But his situation quickly became more complicated.
Procedures, appointments… and disappointments. There have been plenty of each since Adam was born. He has suffered multiple infections, undergone liver failure and been diagnosed with pulmonary vein stenosis, an obstacle to subsequent heart surgery.
Hope for life
Life may not always be perfect, but Lamyaa and Badr are happy to have the chance to live every moment to the fullest with their son, even through they don’t know what tomorrow holds.
Adam has taught us how to make the most of every moment. One day at a time, one smile at a time, one fight at a time. If we eventually run out of options for him, we know that the specialized teams at Sainte-Justine will do everything in their power to optimize his quality of life right up until the very end.
In addition to the many specialized cardiology services he receives, Adam has access to a wide range of professionals at Sainte-Justine who work together to ensure his experience is as comfortable and pleasant as possible.
All about today
Little Adam will soon turn two. He is still fighting – with the same beaming smile. He is currently being pre-screened to determine whether he would be a good transplant candidate.
Every extra day is a gift for Adam. How far will life and modern medicine get him? Nobody knows for sure. His parents have learned to live with this ambiguity. Tomorrow may be a mystery, but today is full of laughter and hugs for Lamyaa, Badr and Adam, who are taking advantage of every single second they have together.