Michael's Story

I remember it like it was yesterday. The date was Friday August 6, 2002 close to midnight. It had been a rough week with our amazing four week old baby boy, Michael.

It had been a few weeks of flu-like symptoms – the things that all babies go through we thought. But that Friday was different. His body was swollen, he was sleeping all hours, and he was bleeding from diarrhea. We made our first trip to the Alberta Children’s Hospital that night.  And we didn’t leave for the next six months.  

The next day was agonizing as we watched our tiny baby go through countless tests and waited hours for the answers.  We eventually got our answer when four doctors came into our room and told us news that would forever change our lives.

That was the day a doctor introduced himself as Dr. Midgely.  “A kidney guy,” he’d said.  We didn’t know at the time he was the Chief of Nephrology at the Alberta Children’s Hospital. He revealed a diagnosis of Congenital Nephrotic Syndrome, which is an extremely rare kidney disease.  It’s so rare the team at our hospital had never seen it before.   It’s a condition where the kidneys leak all the protein from the body. Dr. Midgely took so much time with us and explained so many things in that hour.   But all that I really remember was holding my precious baby boy and hearing the word “transplant”. 

Michael was put immediately on Albumin and Immunoglobin infusions. He was taking 10 – 12 meds three times per day.  

Although the thought of a kidney transplant was daunting, it was nothing compared to the two and a half years that followed.  Our lives were turned up side down and became centred around achieving a weight of 12 kilograms before he could have the only operation that would save his life.

The Alberta Children's Hospital practically became our home as our life became eight hours of infusions followed by two hours of more infusions daily.  We couldn’t leave and our lives were put on hold.  It broke our hearts to see one son so sick and to see our other son Zack passed around to friends and family.  It took many months of this “routine” but we finally got authorization for Trevor and I to perform Michael treatments at home.  After that we only had to come to the hospital every week for one treatment that could not be done at home. His room at home was just like a hospital room with an IV and feeding Pump.  His toy box held all of his medical supplies.  Michael wasn’t eating or growing so a g-tube was inserted into his tummy so he could get the proper nutrition.  This was our life and it controlled everything.

In February of 2006 we learned that Michael’s kidneys had failed completely and he would have to start dialysis. He began dialysis treatments that were on twelve hours per night. Hooking your child up to dialysis is a skill parents should never have to know about but another skill Trevor and I took on at home.  Michael spent 9 months on dialysis. 

In the winter of 2006 our life changed forever.  And thankfully - for the better.  Michael had his kidney transplant and it was a complete success!

And I had the very rare and privileged experience of being a patient at the Alberta Children's Hospital, because I gave him one of my kidneys.

The first few days after the surgery were the scariest of our lives.  Michael developed fluid on his lungs and ended up on life support in the ICU where he spent 5 days – almost lifeless.  Those days were the hardest thing we’ve gone through on this journey so far.  Michael of course battled his way back and he is truly the most amazing little boy.  He is our Hero! 

Words can never express how thankful we are, and how overwhelming it was to receive so much care and support.

Each time we walk into the Alberta Children's Hospital, I look at the doctors and nurses and everyone who works there in complete and utter awe.  They are remarkable and we would have never been able to go through those terrifying days without them.  The people at the Alberta Children's Hospital saved our beautiful son’s life…and they without a doubt saved our hearts.

The Alberta Children’s Hospital is world-class!  While it’s a reflection of the amazing people within its walls who care for our children, it’s also a testament to the generosity of the people who support it.

To all of the people who were involved in caring for our son…Thank you, for your time, your dedication, your care, your friendship and most of all the love you show for Michael and our entire family.  I hope you know how much you mean to us. You are our heroes and you’ll be in our hearts always!   

We Love You and We Thank You!!

Kristy, grateful mom