Family Dynamic
Megan and Matt Herrett are extraordinary parents who are raising two young children living with ostomies. While some may perceive their circumstance to be a challenge, the Herretts recognize this as an opportunity to help educate their community in and around Boise, Idaho. Their children, Maggie and Winston, have a rare liver disease that necessitated lifesaving ostomy surgeries to drain harmful bile in lieu of liver transplants.
"We are in a unique medical subset that doesn't fit the usual ostomy mold," explains Megan. "My biggest support came from a Facebook group related to the children's disease."
One approach learned through the group was to be totally open about the children's ostomies with others that interacted with them on a daily basis. When Maggie started kindergarten, the Herretts planned to go into the classroom and speak to her classmates and teachers, but their daughter was adamant about keeping the ostomy hidden from the world.
"At the end of the day we had to respect it," says Megan. "After all, it is her body."
At ten years old, Maggie still struggles with the idea of having to wear a pouch. Since she was just over a year old at the time of surgery, she has no recollection of life without an ostomy. The Herretts explained to Maggie that the procedure saved her life and showed her "before" photos of herself looking terribly ill.
"We remind her that life was pretty scary, and this was the thing that gave us all our lives back," says Megan.
Even though she doesn't talk about it, Maggie doesn't let her ostomy stop her. She's a talented gymnast, and when asked to try out for the competitive team, Maggie's mom hoped her ostomy wouldn't disqualify her. Megan reached out to the United Ostomy Associations of America (UOAA) who put her in touch with a Wound, Ostomy and Continence Care Nurse (WOCN) for tips on keeping the pouch secure. The fix was simplea tight leotard and an ostomy support belt helped Maggie feel confident and ready to compete.
"It's amazing how strong she is," beams Megan. "Part of me hopes that she becomes a successful gymnast to show other girls that her ostomy doesn't stop her from doing these hard events."
When Winston was born with the same disease, the Herretts were understandably devastated, before accepting it as a blessing in disguise. Since both children have an ostomy, they can rely on each other when the going gets tough.
The siblings are undeniably different sides of the same coin. At seven years old, Winston is an extrovert who can have a conversation with anybody. He actually agreed to have his parents speak to his teachers and classmates about his ostomy.
Megan's ostomy perspective took a turn after someone made an ignorant comment about Maggie's ostomy pouch in public. She knew right then and there that she had to do something to educate the community at large about ostomies. Megan contacted the UOAA about bringing the Run for Resilience Ostomy 5K to Boise. Now in its third year, the race has become a huge triumph.
"The real success of the event occurs when participants later explain ostomies to others in the community who may know nothing about them," says Megan.
Megan's advice to parents of children with ostomies is to respect the child's wishes on how to approach the issue. It's also important to strike a balance between normalizing the experience and being an advocate for your child. Matt Herrett's way of normalizing the ostomy for the children was to get an ostomy pouch tattoo on his abdomen. It's also his way of starting a dialogue about ostomies at the pool, beach or gym.
Megan is sure she has changed more ostomy pouches than any other mom, but seeing her kids succeed in life keeps her going. When she occasionally gets "down in the dumps," an opportunity to help educate others arises, and that lifts her back up.
"We're in a unique position to be able to offer insights," concludes Megan. "I feel it's our obligation to contribute to the conversation and advocate for people in the same situation."
Wondering how you, too, can make a positive impact in the ostomy community? You don't have to get an ostomy pouch tattoo to spread the word, but you can participate in the Run for Resilience 5K in Boise, or in several other cities. For more information or to sign up for an event, go to Ostomy5k.org.
Megan Herrett is an attorney from Boise, Idaho, and the mother of two children with ostomies. She and her husband, Matt, are the organizers of the Boise Run for Resilience Ostomy 5K, now in its third year. When Megan and Matt are not traveling with Maggie to gymnastics meets, they love to spend time camping with their family in the mountains of Idaho.
Financial Disclosure: Megan Herrett received compensation from Hollister Incorporated for her contribution to this eNewsletter.
Photography used with permission from Natalie Koziuk Photography and Megan Herrett.
