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Parents of a child with an ostomy face unique challenges that those who receive ostomies as adults do not. Ostomy Toronto has been working to provide more support to parents, but we were missing a parent who has “been there, done that” to take the lead in this area. In May 2011, a parent stepped forward to fill this gap. Ostomy Toronto is pleased to welcome Michelle Wan to our Board of Directors as our first parent to serve on the Board.
When my baby girl was first discharged from Sick Kids after having emergency colostomy surgery at just 36 hours old, I thought to myself “how am I ever going to manage looking after a new baby AND figuring out how to change a colostomy bag?” It all seemed so overwhelming and I honestly didn’t know if I was going to make it. Managing an ostomy for an infant is very different from an adult – the skin is much more sensitive, you have to constantly research new products to adapt to the baby’s rapid growth and development, and often the system needs to be changed as frequently as every 6 hours. (The longest we have ever been able to keep her colostomy bag on was 24 hours!). It took about 6 months and countless hours of research to finally figure out a system that worked for us, but we weren’t out of the water yet! In the back of my head, I knew I would have to return back to work to help pay the bills and it finally dawned on me that I was going to have to find a daycare that was willing to learn how to change an ostomy! One of the first phone calls I made was to Ostomy Toronto and unfortunately, no one had ever inquired about finding a daycare for an infant with a colostomy before so there were no existing resources. In fact, no place I called, from Toronto Children’s Services to the department of Social work at Sick Kids Hospital had ever heard of someone trying to find a typical daycare that could change a colostomy! After phoning pretty much everyone in the City (and being known as “Oh you’re the mother who is trying to find a daycare for your daughter with a colostomy –I’ve heard of you!”), we finally found a daycare that was willing to build an infant colostomy training program for their staff from scratch. I am happy to report that our efforts were successful and my daughter was fully integrated into a typical City daycare! The training program is now being used to help train ET nurses at St. Elizabeth Healthcare, and it was even recognized by the Ontario Lieutenant Governor, David Onley at Queen Park during the 2010 City Kids Inclusion Awards. Opportunities Since my daughter’s birth, I have been able to pass on my knowledge and experiences to other parents who have had similar challenges. Many of these parents live in the US and even overseas so unfortunately, I have never met them in person. Having a parent group at Ostomy Toronto would be an invaluable resource for other Ontario families going through similar experiences. We have only been able to connect with one Toronto family so far and I can’t even express what a positive experience this has been for both families involved. We spend so much time trying to explain our situations to everyone and it has been such a stress reliever to meet up with people who know exactly what we are going through! Our daughters will grow up together knowing that they are not the only ones in the world with their condition and they will be able to form a very special friendship as a result. As a parent, we want our children to grow, to thrive and to be happy, and being able to provide this type of a positive experience for my daughter brings us one step closer to achieving our goal. Resources for Parents Ostomy Toronto’s online handbook has a section especially for parents. In addition to the handbook, some resources that may assist parents include: Tax and Funding Links
Disability Tax Credit |
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