Saving Little Hearts

My name is Aidan Meilleur-Wilson and I am 4 years old. Some people have referred to me as “the Miracle Baby”, but Mommy and Daddy always seem to introduce me as “our little devil”. So I’ve heard I’m a real handful. And apparently it all began the day I was born.

January 31st, 2002, started off as a cool and calm day for Mommy as she awoke in the morning, going into slow and painless labor. She made her way to the hospital and had a pretty easy-going day until the pain jumped into effect in late afternoon. That’s when Daddy started to get a little nervous and looking a little pale. Hours went by and after Mommy received a much needed epidural the rest was smooth sailing for her and Dad…so they thought. While Mom was in labor that day my heart beat wasn’t “picking up right” on the monitors. The nurses changed the monitor probes three times and the machine altogether two times, thinking that their equipment wasn’t working properly. Boy, were they wrong as they were soon to find out.

At midnight Mommy started pushing and into the world I came at 12:45 am, Friday, February 1st, 2002! After barely a glance at me by Mommy, I was quickly placed onto a table and had what seemed to be a roomful of white coats surrounding me. All was not well. I was very bluish-purple and not doing favorably at all. I was rushed straight over to the nursery where Daddy watched me get resuscitated over and over, for hours. Mommy had no idea what was going on.

At 4:00 o’clock that morning I was taken from the hospital I was born at (in our end of the city) and ambulanced over to the Winnipeg Children’s Hospital. Daddy and Grandma went with me while Mommy stayed back at the delivering hospital with two of my new aunties.

Later that day after Mommy arrived, she and Dad – along with a few other family members – were called into a meeting room where they were told the news that they hated to hear. I had multiple heart defects and required emergency surgery as soon as possible. I was diagnosed with pulmonary artresia, dextrocardia (my heart is on the right side of my chest, not the left), transposition of the great arteries, multiple ventricular septal defects, an extra superior vena cava, and a cyst on the exterior of my heart. I can almost guarantee that that was a lot to sink in for my family.

Because I was born on a Friday, I would have to wait until Monday to be transferred to the Stollery Children’s Hospital way far away in Edmonton. But, I had lots of visitors who came to the NICU in Winnipeg to welcome me to the world and say hi before I had to leave. That meant the world to Mommy and Daddy to know they had a lot of family support.

So Monday rolled around and off we went. I underwent my first open-heart surgery when I was five days old. I had a “shunt” put in to my ductus which would bide me some time so that I could grow and get a bit stronger before I would get my BIG surgery…the “Repair”. Considering all of my underlying problems, surgery went well and I was in and out of that hospital in 10 days. I came back home to Winnipeg on Valentine’s Day - very appropriately. I spent a couple more weeks in the Children’s Hospital until I was eating well enough, gaining weight and healing from my surgery. Mommy got the best birthday present of her life that year…I got to come home the day before her 25th birthday. I was so happy too because I finally got to sleep in my own crib that sat empty for 5 weeks. It was so much softer and prettier than that darn hospital one! And I wasn’t being woken up every ten minutes to be poked and prodded at by nurses and doctors. Just hugs, kisses & constant cuddles from Mommy and Daddy.

That became short-lived when at five months old life took a sudden turn again.

Mommy, aunty and I were just returning home from visiting my Dad in the hospital (he was having problems with his kidneys and already spent a couple days in the hospital), when disaster struck…I went into heart failure!! I turned blue, was barely breathing and went unconscious. Aunty called 911 immediately while Mommy undressed me, started to massage my chest (to keep the blood flowing) and doing the best she could until the ambulance arrived. Thank God we live a block away from the dispatch!! The paramedics arrived within minutes and off to the hospital we went.

Once we arrived at the Children’s Emergency I was soon rushed into the Resuscitation Room where I was once again fighting for my life. Mommy ran across to the other end of the hospital to get Daddy and ran back down the hallways with him in a wheelchair. They burst into the room where I was being resuscitated for the second time in my short life. Tears were flowing and hopes were slowly going out the door.

Fortunately, the team managed to get my vitals under control and once stabilized I was transferred to the PICU. I stayed there for just over a week and then was sent home to await my next surgery. I was home for hardly few days when I started having major blue-spells again. Off to the hospital again I went. As you can imagine, I was getting pretty darn sick of ambulance rides by then!

It wasn’t long after that the doctors in Winnipeg and Edmonton decided to send me back to the Stollery to await a surgery date. I was having too many ups and downs and I think I was starting to make our cardiologist a little nervous.

Well what a summer that ended up being. I was in Edmonton for seven weeks!! I did have a scheduled surgery date, but I picked up a flu bug in the hospital and surgery was put back more than three weeks. Once I was finally healthy enough to have the repairs done (the Rastelli procedure), I did very well after that. The surgery was very long in length, over seven hours altogether! And as part of the procedure, I had a transplanted valve and tube (conduit) conjoining two of the chambers of my heart. That was used to properly route the blood flow. And if you can believe this…it came from a cow!! Hope I don’t get mad-cow disease, ha-ha.

Mom and Dad had a hard time sitting in the waiting area that day, wondering how things were going. Dr. Ross performed that surgery and he was (and is) a Saint in our eyes for performing the miracles that he does. He was kind enough too to let my Mom and Dad know how surgery was going half-way through and again after it was all done. He is our hero.

Nearing the end of July I went home to my family again. Unfortunately, while I was gone my great-great grandmother fell ill and passed away the morning after our return. We were going to make the trip to see her in hospital but she could not hold on. Sad news for our own happy day.

Well everything was just hunky-dory when all of a sudden the next chapter in my life started. The next set of bad news bears came knocking on our door that winter, and boy were they not nice!!

Mom and Dad received a call one day - it was not pleasant. Apparently, the conduit and valve that were transplanted into my heart may have been contaminated. A random check was done on the petri dish that the tissue was stored in and it was found to be growing fungus on it. Because of this find, Mom was asked to bring me in for some tests.

At my appointment I had an echo done. I had some blood work taken and underwent a routine exam by Dr. Divekar, my cardiologist, while we waited for our results. Well that’s when all hell broke loose. Dr. Divekar felt a lump in my abdomen. Mom laughed and said that it was probably one of my big air bubbles that I like to let go once in a while, but he did not laugh along with her. He was serious. He scooped me up and took me back to the echo machine. He did some scanning then took me and Mom down the hospital tunnels, over to the Children’s Hospital and up to the ultrasound department. There he and the techs did some more prodding and finally allowed Mom to hear the news and see their results.

IT WAS A TUMOR IN MY RIGHT KIDNEY!!

You could just look at the ultrasound screen and see the large white mass in my abdomen that should have been a kidney. Mom tried to stay calm as they told her that I would have to be admitted for more testing to see if it was cancerous and what the plan would be for me. While they checked me out some more, Mom went to call Dad and tell him the devastating news. He had just gone out of town to visit my half-sister, Hailey, when he had to rush right back in. He was very overwhelmed and upset and so was Mom by then.

I was admitted to the ward that day, diagnosed with cancer (Wilm’s tumor) two days later and had my right kidney removed on day seven. This was all going on just two weeks before my first Christmas. Merry Christmas to me! I stayed for another week in the hospital post-op and started chemo before I was discharged. I did manage to get home before Christmas Eve and Mommy & Daddy went out and bought the biggest Christmas tree you ever saw!! I got tons of gifts from everyone and even received a Christmas hamper from the Heart Clinic as well. That helped out a lot, because neither Mom nor Dad had yet to return to work since I was born. We definitely made the most of Christmas that year!!

My first birthday rolled around a month later and I could not have a big celebration. Because I was undergoing chemotherapy I had to stay clear of everyone and everything so that I would not get sick. My parents and our immediate family came over for pizza and cake and again I got lots of special presents…especially the early birth of my first cousin on my mom’s side (I was the only grandchild up until then). I think she came early to say “happy 1st birthday” in person.

May came up quickly and I had my last dose of chemo, and had my chest tubes removed May 13th. I had no hair left on me by then – not on my head or my body, and had no eyebrows or eyelashes left either. The months of treatment were sometimes hard, as I would puke for days after each dose of chemo drugs, I was very tired looking and feeling, I had sores around my mouth and nose, I was bloated and bald, but I still managed to have many happy days as well. Even though I had so many dreadful things happening with me, I rarely lost my smile and ability to flirt a smile onto other people’s faces as well. Once my chemo was over and the numbness in my hands and feet went away (that happens from the drugs), I finally started to walk. No, not walk – RUN!! I was cruising and I loved it. New found freedom for me!

Well back to the story. The doctors gave me a month to recuperate from the chemo then off to Edmonton I went AGAIN, to have the contaminated conduit replaced. Surgery went well as planned – the same seven hour surgery – but I did not “come around” very well the days that followed. It took days to stabilize me and my vitals would fly through the roof and then plummet down through the floor. I was constantly being pumped full of drugs to keep me as level as possible. Then on day three post-op Mom and Dad noticed that something just wasn’t right with me. Every time I was moved or picked up, the right side of me was totally limp. They persisted in voicing their concerns and sure enough, after a scan of my brain was taken, they were proven correct. I had suffered from a stroke on the left side of my brain and the right side of my little body was paralyzed. What else could go wrong?!

I was transferred over to the ward a day or two after that (can’t remember exactly, it was all a blur) and that’s when the worst moment of Mommy and Daddy’s life occurred. My vitals went berserk again and my heart rate shot up to 300 beats per minute. I went lifeless and unresponsive and my parents saw me be resuscitated again for the third time. That was the first time all of our drama took the best of them. They broke down and it was the only moment that they ever really lost all hope. I pulled through as you can tell though, because I am still here to tell my story.

When Mom and Dad felt that they couldn’t do it alone anymore they called my Grandma in Manitoba. With money they raised at our fundraiser before we left, they flew her out as soon as they could. She arrived the next day and man, was I glad to see her!! Before she had gotten to the hospital I was feeling like crap. But once I saw that familiar face I did a 180 degree turnaround. Everything seemed to balance out inside of me and radiated to the outside as well. Within a couple days of her arrival we were all flying back home together. The movement in my leg and arm was coming back at a slow but steady rate, but my speech and ability to walk was still gone. Those started to work themselves out about a month later. I was back to running after some work in physiotherapy, got full movement in my right arm from occupational therapy, and although my speech did come back I still attend speech therapy. Since my stroke I have become a southpaw and do have some mild side effects including hyperactivity. They say that heart kids are supposed to be lacking in energy, but not me!!! Just ask anyone who knows me…they’ll say the same. Ha-ha-ha!

Again like the last return, another great-grandparent of mine passed away. He was my favorite and I was his. Luckily I did get to visit with him before he left us and brought a big smile to his face. I miss him a lot and hope that I am still making him proud “up there”. Miss you Mooshie!

So since that surgery things have been pretty good. I did have two other surgeries since then – one to remove my left testicle because of another defect that I was born with – Cryptochidism – and another more minor heart surgery to open the artery going from my heart to my left lung (it keeps closing up on me for some reason). I’ve had multiple heart catherizations between all of my surgeries and to date I have undergone 12 surgeries/procedures altogether! And that was all before I turned 3 years old!! I have my next open-heart scheduled for when I am around kindergarten age. Hmm, maybe I do see why they call me the Miracle Baby after all.

Despite all the turbulent and unfortunate things that have happened to me, I am a very cool and well adjusted kid. I love swimming, “fixing” my toys cars, riding my custom tricycle that my Dad made me, Woody & Buzz Lightyear (well, anything to do with Toy Story really), and my favorite songs are “Cowboy” by Kid Rock and “You Are My Sunshine”. To look at me, you would never in a million years know that anything is wrong with me, although strip me down and you’d say different. Considering all of my scars I have proudly accumulated I have done modeling professionally. I have been in the local newspapers countless times and am a poster child for our Heart Centre’s website, the Variety Club of Manitoba’s website & Telethon advertisements, the Rainbow Society’s website/pamphlet/commercial, and the Western Canada Children’s Heart Network’s website. My parents and I were featured on the Variety Club Telethon two years in a row and we were also speakers for the Children’s Hospital Miracle Radiothon and Rainbow Society’s gala events. The three of us are also VERY active members of our local Family Support Network call the “Circle of Hearts”, through the Variety Children’s Heart Clinic. My Mom is now the President and is the Newsletter Editor for the COH and she is also one of two Family Representatives from our province for the Western Canada Children’s Heart Network. My Dad is a Member-at-Large for the COH too, and is the only dad on the entire Committee. We try to give back to the people and places that have helped us out through the years and help out other families who are in the same sort of situation as us. Some of my bestest friends in the world are the fellow hospital kids that I have met along the way.

I am proud of my scars and show them to people all the time. It shows them the true strength of a child and the relentless will to live. It shows that not everyone is perfect, but is still just as loveable as anyone else. It shows others that there are more important things in life than what you can accumulate but rather what you have to lose. Mom’s motto is “bad things happen so that worse things don’t” and so we take the bad news with the good and work with it. We’ve come this far so we will never give up fighting and living life to the fullest.

(Besides my parents) I’d like to make mention of the most wonderful and beautiful people in my life. They are my family and friends who are always there for us in good times and in bad; the community of Peguis (where half of my family is from) who have supported me and my parents in every way possible since the day I was born; the many charities that we’re closely associated with, the Circle of Hearts who provides us with support, education, good-times, and best friends; the Rainbow Society for granting my wish of meeting Woody, Buzz Lightyear and the rest of the Toy Story gang in Florida at Disney World, the Children’s Wish Foundation for granting my second wish of having a puppy named Buster (wiener dog just like in the movie Toy Story), Dr. Ross & Dr. Rebeyka who have saved my life time and time again (love you guys with all my heart…and the extra pieces too, ha-ha); the LONG list of specialists who keep a close and watchful eye on me (there isn’t a single section of the Children’s Hospital that I haven’t dealt with!), and last but not least the wonderful doctors and staff at the Variety Children’s Heart Centre, CancerCare Manitoba & Children’s Hospital who work their butts off to keep me safe and healthy. They are like a second family to me and my parents, and they are the greatest people in the world!! Keep up the great work everyone!
Lastly, we are grateful for CarePages for helping us to keep all of our friends and families updated on how I am doing – the good and the bad – and for allowing us to meet other families who are on the same journey as we are. You can find my personal page at www.carepages.com and my page is AidanMW. We love to have new visitors and read the postings that people send to me and my parents.

From Our Hearts to Yours,

Aidan Meilleur-Wilson & Parents (Joni & Evan)