BEGINNING OF HIS JOURNEY

Allah knows what every female bears, and that of which the wombs fall short of completion and that which they grow. And everything with Allah has a measure.      Holy Qur’an Surah 3:8

I decided to share our story because it is an extraordinary one that my son had overcome and I wanted to share our experience with family and friends but mostly with families new to the Congenital Heart Defect Community. To offer hope, be an inspiration, and be a living testament of what Allah will allow us to go through and with nothing but belief and faith in Him, He will allow us to come out of it successfully.

On August 28, 2006 my son, Qadar, was born with a congenital (present at birth) heart defect called Hypo-Plastic Left Heart Syndrome (HLHS). HLHS “is a congenital birth defect that affects the left side of the heart. HLHS is a condition in which the left side of the heart, which pumps blood to the body, fails to develop properly. It is the most common fatal congenital heart disease in newborns; without treatment greater than 95% die before one month of age. Most babies die by ten days of age if the condition is not diagnosed”. Qadar’s condition was known before his birth so there was a special medical team assembled, in my room, that was ready to receive him and tend to him upon delivery. I was only able to admire him from a distance, say I love you and kiss him from a distance before he was stabilized and whisked off to Children’s Memorial Hospital in Chicago. I was in recovery for less than 24 hours before I discharged myself to go be with my baby.

Oh my God, he was so adorable laying there; surrounded by a soft plastic apparatus shielding his crib, in place to keep in his own atmosphere, so peaceful and content not knowing what was to become of him in the days ahead. I remember he didn’t like to be touched; every time the nurse would take his vitals or run tests he would always cry but the moment you took your hands off of him – instant silence. I learned that just by observing him. I tried putting booties on his feet. Guess what, he cried and kicked them nearly off; but, the moment I left him alone there was silence.

I remember staring at his chest watching him breathe wondering why?

There is no concrete understanding as to why this defect occurs. Most research I’ve come across says outright, “they don’t know”. Others attribute it to either the environment or genetic factors.

The survival rate remains to be seen. Thanks to Dr. Norwood, Dr. Glenn, and Dr. Fontan for creating procedures that ultimately extended life expectancy greatly because prior to 1983 (the year Dr. Norwood created the procedure) there was an extremely high mortality rate. HLHS patients have to have a total of three surgeries to ultimately get the right side of the heart to do the work of both the left and the right.