Reichen's Story. Written by his Mom, Adrien

I am fortunate enough to have a great group of friends and we call ourselves runners. The Island Girls running group meets in Kensington, Prince Edward Island and we have just started our training for the Johnny Miles half marathon in mid-June. On Wednesday, April 6th, 2011, a Running Room store is opening in Charlottetown, PEI and as part of their Grand Opening, they are sponsoring a 2.5k and a 5k run/walk with all monies going to the IWK Childrens' Hospital in Halifax, Nova Scotia.

Adrien and Wayne have just run their first 10k race last weekend in a spring snowstorm as part of the W3 Wear Red race festivities.  Below is their IWK Story...Come join us on Wednesday evening to run/walk as far as you can and help the IWK help little children like Reichen.  

Why we LOVE the IWK - Reichen's story

by Adrien Bernard Sherry on Sunday, April 3, 2011 at 9:33pm

keywords: IWK, Isaak Walton Killam Childrens' Hospital, Halifax, Spina Bifida, 

Reichen was born with a "hole" in his back; it looked like a belly button.  We saw numerous doctors in Summerside but none of them knew exactly what it was, or if it was serious. UNTIL we saw Dr. Wong, one of the Paediatricians in Summerside.  He knew right away that it was something that required immediate attention.  He took pictures and emailed them to the neurology dept. at the IWK and we were sent for an MRI the next week.  Reichen was 7 weeks old for our first trip to the IWK to have his MRI.  The MRI was in the morning and we had an appointment with a pediatric neurosurgeon at 1pm to discuss the results.  

Dr. Dan McNeely, is one of the pediatric neurosurgeons at the IWK.  He told us that Reichen had Spina Bifida Occulta and Tethered Cord Syndrome.  Spina Bifida Occulta is the mildest form of Spina Bifida and referred to the hole in his back.  The hole was open all the way into his spinal column so he was had a major risk for meningitis and other infections.  Tethered Cord Syndrome was something they would NOT have seen without the MRI, but is quite common in children with Spina Bifida Occulta.  It meant that his spinal cord was attached (tethered) to his spine.  The spinal cord is supposed to float freely in the spinal fluid but his was attached/tethered.  The risk was that as Reichen grew the spinal cord would stretch and worst case scenario, break causing paralysis from the waist down.  We were terrified but Dr. McNeely and his nurse Coleen were so supportive and understanding.  Dr. McNeely pulled out his blackberry and said “We need to schedule surgery as soon as possible; I am available June 22nd or July 6th.”  It was amazing, there was no waiting for phone calls or letters, and we scheduled Reichens surgery right there for June 22nd. 

Dr. McNeely preformed Reichen surgery on June 22nd, Reichen was 9 weeks old.  The absolute hardest thing I have ever done was hand over my 9 week old baby to the surgeons, but they took such great care of him.  They were able to “un”tether his spinal cord and close the hole into his spinal column.  The surgery took about 5 hours.  Reichen was a trooper, he had to lay flat on his back in his bed for the first 48 hrs (very challenging for breastfeeding!) and needed pain medication but was a pretty happy little baby!

We were able to come home 4 days later, amazing! We returned in August for a check up and Reichen passed with flying colors. Every year we attend the spine bifida clinic at the IWK  where Reichen has an ultrasound and appointments with specialists who check to make sure everything is working properly.  At our appointment in 2010, they were so pleased with his progress that we got to skip a year!! 

We are so fortunate to have such a wonderful facility available to us.  Reichen is doing extremely well; he can do everything a normal 3yr old can do.  He is also fully potty trained!!  Bowel and bladder function were a concern in the beginning but he is doing just great!

This year we are celebrating Reichen’s success with his first ever 2.5km fun run on Wednesday April 6th. PLEASE JOIN US!!  The Running Room is opening in Charlottetown and they are having a fundraiser for the IWK.  EVERYONE is welcome, it is a family event.  There will be a 5km run/walk and a 2.5km run/walk.  Registration is $10 and 100% of that goes to the IWK.  PLEASE register for this event, if you can’t attend at least you made a donation to one of the BEST hospitals in the world!