Sienna's Story

I am a mother of an incredibly happy and vivacious 3 year old named Sienna.  As a mother you plan on teaching your children all about life but I’ve learned more from her in 3 short years then I can ever hope to teach her in a lifetime.

When Sienna was born she had a bigger then average head but we just figured it was “full of brains” and she was just going to be an exceptional child.  What parent wouldn’t think that??  But at her 6-month check up, they measured her head circumference and found her head had grown and the measurement blew off the chart.  An ultrasound and then MRI found a cyst on the lining of her brain.  I didn’t know what that meant for her or us.  It was one of the scariest and most confusing days of my life.  We met with Dr. Mark Hamilton at the Alberta Children’s Hospital and he reassured us that these cysts were common.  Her head was much larger then average but could be fixed with a surgery called a craniotomy. He explained that a Craniotomy is where they cut out a flap of her skull and poke holes in her cyst so it would drain naturally on its own. Dr. Hamilton explained this surgery has a 95% success rate.  As parents, we were on one hand terrified to pass our baby over for brain surgery, but on the other, we had faith in our doctor and Sienna would be fine.

Unfortunately, Sienna fell into the 5% of patients who the surgery was not successful for and had a shunt installed in her head to drain the excess fluid from her brain.  Again, we were reassured that millions of people worldwide have shunts and live full, complete lives.  We were told most shunts average about 2 years before having to be changed but some people can go more then 10 years without ever having to change it.

Two weeks later, her first shunt failed and she had surgery to change it out.  And then it happened again and again.  Her body just kept rejecting them.  Her surgeons had never seen anything like it.  And this is when her ordeal really started.  They found she was full of infection when they removed the shunt.  Over the course of the next 4 months, she had about 15 surgeries, 4 more cases of meningitis and countless IV issues as all her veins were blowing from having so many procedures.  She was losing weight at an alarming rate and seemed to be fading before our eyes.  The Alberta Children’s Hospital became our home and we didn’t leave for close to 3 months.  Despite it all, Sienna seemed to be the one comforting us.  She always tried to give us a smile or blow us a kiss.  It was almost like this little 14 month old was trying to give us hope and strength.

She did eventually stabilize and we got to go home.  But two months later she took a turn and the Alberta Children's Hospital became our home once again.  Sienna developed severe Hydrocephalus due to all of the complications and part of her brain ballooned so severely, we almost lost her.  They rushed her in for surgery to stabilize her and then the long weeks of uncertainty followed.  Our team was unsure how to proceed as they had never seen anything like this before but they were determined to get her up and out and well.  They had to put her on special drugs to try to get rid of it the reoccurring infection once and for all as it had become almost as big a problem as the shunt issues we had been dealing with.

After what felt like a lifetime, Sienna’s team of surgeons – she had a team by this point - came up with a plan that was risky.  But the alternative was losing our daughter. They went in and performed a brain surgery that lasted 9 hours.  She was only a year and a half and had already held the record at the Alberta Children's Hospital for the most surgeries in a child so young.  That was the turning point.  She started coming back to us.  It took a long time and by that point, she’d been lying flat on her back for 10 weeks.  She was weak, she was severely underweight, but it was looking like maybe she finally had a fighting chance.

And fight she did.  Sienna has now been stable for just over a year and she’s finally thriving.  She still relies on a shunt that was designed especially for her and we know she will face her own set of challenges.  But we have full faith and confidence in her doctors, her surgeons and her care team at the Alberta Children's Hospital that we know we can face those days ahead with the best support we could hope for.

To look at her now, it’s hard to imagine Sienna’s had 30 surgeries in total, only 2 of which were scheduled surgeries, the rest were emergency situations.  She weighed less at almost 2 years of age then she did at 7 months old, and she couldn’t even sit on her own without some sort of support.  In the last year, she has learned to sit, learned to crawl, learned to walk along furniture and is now walking all on her own.  She talks a mile a minute and is constantly keeping us on our toes with how clever she is. 

Living in a hospital room for about 9 months combined, conscious of the fact that we could lose our baby, taught us some very valuable lessons.  We celebrate the small things and we celebrate every day.  We now know that life is NOT about who has the biggest house or the flashiest car.  In fact until our baby’s life was in jeopardy – I don’t think we actually “got it”.  All life is about is love.  That’s it.  What a gift Sienna has given us to find such contentment and joy in our lives.

Last year, we were full of hope and dreams of what her future could be if she survived.  Now, thanks to the Alberta Children's Hospital and her doctors and nurses, we are living it and loving every minute of it.  I can’t imagine where we would be now without the hospital.

I wish that we never had to find out what amazing life-saving things the Alberta Children’s Hospital could do - but we are only too familiar with the miracles that happen in this building.  Without these people and their knowledge and perseverance, we would have lost Sienna.  People always ask me:  How do you say thanks to everyone who helped Sienna?  Well there is no way I could possibly express the gratitude I have.  There simply are no words.  But I can show my gratitude by living life with Sienna to the fullest and to celebrate what we have been given back – everyday.

Brenda, mom to Sienna