Doug’s Story
After reading the story about little Massimo in Le Children magazine, I felt it was time for me to share my son’s story. Douglas was a born on November 25th 1985 with the same condition as Massimo: “Transposition of the great arteries (TGA)”.
The day Doug was born we were left with a million questions. Why was he born with this condition? How many children are born this way? What did we do to cause this? And the biggest question: will he grow up?
It was not until I was exposed to the Neonatal Unit of the Children’s that I came to realize what some parents go through with their newborns.
As soon as Douglas was born, the nurse took him over to the warming lamp and started to clean him up. She showed immediate concern for his color and insisted something was not quite right. That’s when the preliminary diagnosis was made: he had TGA. He was immediately put on an IV to administer a lifesaving drug to keep a little shunt open that lies between the two great arteries. While in the womb this shunt allows for additional transfer of blood, but as soon as the baby is born this shunt begins to close. For Douglas it was imperative that it stay open as it was the only way his little body was to get oxygenated blood!
Once he was stabilized, he was transferred to the Montreal Children’s Hospital. Both my wife and I felt helpless and did not know what to do to make it better. I had to leave her and follow him to the Montreal Children’s. I can only imagine looking back now how difficult that night must have been for my wife, left behind waiting for some kind of update.
There were a great number of questions, information gathering, all of which very important as it was the start of what would become over time the largest dossier that I have ever seen! While answering the questions you find yourself asking your own, “what did we do wrong to cause this to happen?” But it does not matter because nothing can change the journey your family has now embarked upon. The only thing to do for us from this point forward was to work with and take guidance from the very special nurses and doctors to do what was needed to bring our Douglas home!
And so began our emotional journey into the unknown. Every day at the hospital, every day taking care of our 5 year old daughter who did not understand why her little brother was not home. We would often say that when things get back to normal, it will be better. However, what you do not know at the time is that there is no “back to normal”. There is only the “new” normal”. Looking back, it was the caring staff that helped us take our first step into the “new normal”.
Dr. Dobell performed the corrective surgery and Dr. Marie Beland became Doug’s Cardiologist until his mid-teens. Yes his mid-teens! Doug came home to a celebration for the end of a great journey that fortunately he would not know or ever remember. His homecoming is thanks to the dedicated doctors and nurses of the Montreal Children’s which, if not for them, our life would not have been enriched by our Doug!
I recall the wall of pictures and stories during my everyday visits to the 9th floor of the Children’s: babies saved by these special people of the Neonatal Unit. These stories provided us the strength and hope that our Douglas would someday play with his friends, go to school, and attend his Graduation.
As soon as Douglas was born, the nurse took him over to the warming lamp and started to clean him up. She showed immediate concern for his color and insisted something was not quite right. That’s when the preliminary diagnosis was made: he had TGA. He was immediately put on an IV to administer a lifesaving drug to keep a little shunt open that lies between the two great arteries. While in the womb this shunt allows for additional transfer of blood, but as soon as the baby is born this shunt begins to close. For Douglas it was imperative that it stay open as it was the only way his little body was to get oxygenated blood!
Once he was stabilized, he was transferred to the Montreal Children’s Hospital. Both my wife and I felt helpless and did not know what to do to make it better. I had to leave her and follow him to the Montreal Children’s. I can only imagine looking back now how difficult that night must have been for my wife, left behind waiting for some kind of update.
There were a great number of questions, information gathering, all of which very important as it was the start of what would become over time the largest dossier that I have ever seen! While answering the questions you find yourself asking your own, “what did we do wrong to cause this to happen?” But it does not matter because nothing can change the journey your family has now embarked upon. The only thing to do for us from this point forward was to work with and take guidance from the very special nurses and doctors to do what was needed to bring our Douglas home!
And so began our emotional journey into the unknown. Every day at the hospital, every day taking care of our 5 year old daughter who did not understand why her little brother was not home. We would often say that when things get back to normal, it will be better. However, what you do not know at the time is that there is no “back to normal”. There is only the “new” normal”. Looking back, it was the caring staff that helped us take our first step into the “new normal”.
Dr. Dobell performed the corrective surgery and Dr. Marie Beland became Doug’s Cardiologist until his mid-teens. Yes his mid-teens! Doug came home to a celebration for the end of a great journey that fortunately he would not know or ever remember. His homecoming is thanks to the dedicated doctors and nurses of the Montreal Children’s which, if not for them, our life would not have been enriched by our Doug!
I recall the wall of pictures and stories during my everyday visits to the 9th floor of the Children’s: babies saved by these special people of the Neonatal Unit. These stories provided us the strength and hope that our Douglas would someday play with his friends, go to school, and attend his Graduation.
Doug did grow up and enjoyed a full and happy childhood. He played baseball, hockey, biking, camping, was in the Cubs and so much more. Today he is a happily married, and is being followed by his cardiologist.
I share this story of Douglas in the hope that it will provide the same comfort and hope to those parents that are just beginning their own “transposition” journey. I realize now the importance of sharing our experience and coming together in support of one another. I wish for you to know that you are strong and that the tunnel is not as long nor as dark as it may feel at times. You WILL find the strength for your little one! - Joseph Pelletier