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Aidan’s Story

Aidan's Story

Newborn | Manitoba | Condition: TGA with VSD, Pulmonary Atresia, Dextrocardia.

My name is Aidan, and I am 3 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. She made her way to the hospital and had a pretty easy-going day until the pain jumped into effect in the late afternoon.

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.

I came into the world at 12:45 a.m. on 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 o’clock that morning, I was taken in an ambulance from the hospital I was born at (in our end of the city) over to the Winnipeg Children’s Hospital. Daddy and Grandma went with me while Mommy stayed back at the delivering hospital.

Multiple heart defects

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 atresia, dextrocardia (my heart is on the right side of my chest, not the left), transposition of the great arteries (TGA), multiple ventricular septal defects, extra superior vena cava, and a cyst on the exterior of my heart.

Because I was born on a Friday, I would have to wait until Monday to be transferred to the Stollery Children’s Hospital 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 into my ductus which would give me time so that I could grow and get a bit stronger before I would get my BIG surgery.

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. 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, and constant cuddles from Mommy and Daddy.

Fighting for my life

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 I went into cardiac arrest! 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 did 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. Mom 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.

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 a few days when I started having major blue-spells. Off to the hospital I went again.

It wasn’t long after that the doctors in Winnipeg and Edmonton worked together and 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.

I was in Edmonton for almost seven weeks. I did have a scheduled surgery date, but I picked up a flu 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 over seven hours long and as part of the procedure, I had a transplanted valve and tube (conduit) conjoining two of the chambers of my heart to properly route the blood flow. And if you can believe this, it came from a cow!

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 kind enough 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.

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. Dr. Divekar felt a lump in my abdomen. He scooped me up and took me back to the echo machine. He did some scanning, and 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.

There was a tumor in my right kidney

You could just look at the TV 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 (Wilms 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. 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 and 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!

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, my body, no eyebrows, and no eyelashes. I was very tired looking and feeling. I had sores around my mouth and nose; I was bloated and bald, but I was still happy as ever. Even though I had so many horrific 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, never mind. Not walk – RUN! I was cruising, and I loved it. New found freedom for me!

The doctors gave me a month to recuperate from the chemo then off to Edmonton I went to have the contaminated conduit replaced. Surgery went well as planned – the same seven hour surgery – but I did not “come around” very well in 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.

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. They broke down and it was the only moment that they ever really lost hope. I pulled through as you can tell though, because I am still here to tell my story.

Miracle baby

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 once I saw that familiar face, I did a 180 degree turnaround. Everything seemed to balance 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, steady rate, but my speech and ability to walk was still gone. Those started to work themselves out a month later.

Since that surgery things have been pretty good. I did have two other surgeries – one to remove my left testicle because of another defect that I was born with – Cryptorchidism – 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 catheterizations between all of my surgeries and to date I have undergone 11 surgeries/procedures altogether! And that was all before I turned 3 years old!! I have my next open-heart scheduled for later this year. 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 toy cars, motorcycles (my idol is Jesse James), riding my custom tricycle that my Dad made me, Woody and Buzz Lightyear, and my favorite song is “Cowboy” by Kid Rock. To look at me, you would never in a million years know that anything is wrong with me, although strip me down and the scars might say something different.

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 just as loveable as anyone else. It shows others that there are more important things in life than what you can accumulate and 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 we work with it. We’ve come this far so we will never give up fighting and living life to the fullest.

From Our Hearts to Yours,

Aidan & Parents, Joni and Evan

This story was written by Aidan’s family, and is written from his perspective.

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