Aidan Meilleur-Wilson
Multiple Congenital Heart Defects
On February 1st, 2002 our beautiful baby boy, Aidan Meilleur-Wilson, came into our world. What was the happiest day of our lives, was the most heart-wrenching as well. Unforeseen before the "big day", Aidan had numerous congenital heart defects that were discovered hours after birth.
After many tests, Dr. Divekar confirmed that Aidan had the following conditions:
VSD (Ventricular Septal Defect)
Pulmonary Artresia Transposition of the Great Arteries Dextrocardia (his heart's on the right hand side of his chest) Narrowing of the Left Pulmonary Artery An extra Superior Vena Cava coming to his heart A valve that did not develop A cyst on Aidan's heart which the doctors are monitoring for any changes Aidan's first year and a half has gone as follows:
He underwent his first heart surgery when he was 5 days old in Edmonton, which Dr. Rebehka performed. Aidan's first surgery consisted of a BT Shunt to reroute the blood flow away from his heart. Because of the holes and other deformities in his heart, the blood was directed into his lungs to be oxygenated and be pumped out to the rest of the body. Because his heart was still so small, the doctors wanted to give it a chance to grow before they performed the more complicated surgeries.
One week after surgery (on Valentine's Day) Aidan was transferred back to Winnipeg where he spent the next month in the Intermediate Care Nursery. He finally got to come home the day before my 25th Birthday! It was the best birthday present I could have asked for!
After only two months of being back at home, he was urgently rushed to Health Sciences Centre Children's Emergency with what seemed to be cardiac distress (at home he turned completely blue, went unconscious and was barely breathing ). It took about ten doctors and nurses to resuscitate him in the emergency room and once stabilized, he spent another couple weeks in the hospital. Realizing that Aidan's heart was too weak to survive the way it was, he was transferred back to Edmonton to undergo his 2nd heart surgery. This one was done by Dr. Ross.
Aidan's second heart surgery consisted of making most of the repairs to his list of defects. The surgery took over seven hours and was one of the most complicated heart surgeries that Dr. Ross has performed. The man is a genius and a saint all in one! Aidan's open heart surgery went as planned and as part of the procedure, he had had a transplanted valve and conduit (tube) placed between two of his chambers to properly route the blood flow. Unfortunately, the transplant was later found to have "a kink" in it and had to be removed during his third heart surgery. It is now replaced with a tube and valve from a cow!! Every couple of years Aidan has to have the conduit and valve replaced because the transplants do not grow with him.
Aidan spent a month and a half in Edmonton due to illness pre-op and also from a couple postponements.
Once we thought that all was well for a while, we received more terrible news. During a routine examination by Dr. Divekar, a massive lump was found in Aidan's abdomen. Just three weeks before Christmas we found out that Dr. Divekar's concerns were confirmed to be a cancerous tumor (Wilm's tumor) in Aidan's right kidney. Aidan had been admitted to the hospital that day of the exam and one week later, had his kidney removed (the tumor was the size of large orange!). He got out of the hospital just in time for Christmas, but had to undergo 6 months of chemotherapy as a precaution. He is now in remission.
After all of Aidan's cancer treatment was finished, he was given a month to recuperate and off to Edmonton we went again. (This past June). The 3rd Heart surgery (again by Dr. Ross) went well itself, but unfortunately Aidan suffered a stroke soon after surgery. He was temporarily paralyzed throughout his right arm, but has since gotten most of his strength back. There are some long-term effects that we may have to deal with later, but right now Aidan seems to be doing fine.
Aidan does have to go for more heart surgeries in the future and even another unrelated surgery (removal of his left testicle due to another condition he was born with, Cryptorchidism) this October.
Despite the very rough start in life that Aidan has come to face, and the many scars he has over his little body, you would never know that our beautiful baby has ever known pain. He is very active, smart and happy and he's always able to bring a smile to anyone's face!
Presently I am still a stay-at-home mom because of the never-ending doctors appointments and ongoing surgeries. We are lucky when we have a week off from appointments, since it doesn't happen very often. Aidan's father (my spouse) does work outside the home, but he always makes sure he's there for Aidan's more important appointments and every surgery, of course.
It's been a lot for us to deal with, but we're doing the best we can. Like us, you may come across people who say "You're so strong" and "How do you deal with it all?". It makes me feel like saying "I'm not strong. I feel like the weakest person alive because I can't take away my son's problems and pain" and "I didn't know there were any other options than to deal with it". But I stop myself and remember that some people don't know what its like and also, that we are not the only two parents who are going through this. People like you can relate, and we can both know that we are not alone on this journey through the Cardiac Life.
Although I have listed a lot of unfortunate things that have happened over the past year and a half, the good times with Aidan override it all!! We are so thankful to have him in our lives and we show him all the time!
~ Joni Meilleur & Evan Wilson ~
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e-mail: circle_of_hearts_vchc@hotmail.com
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