Education Amid Tragedy

By Susan Burns, UOAA President

It’s heartbreaking. So many of us are torn apart by the recent news that a ten-year-old took his own life in Louisville, Kentucky. What we know is that he was a kind soul, this boy named Seven Bridges, and he was a victim of bullying. His medical history is also similar to many in our community in that he had an ostomy at a young age. He had an imperforate anus and braved over 20 surgeries in his short life. His mother Tami Charles said he lived an active life with an ostomy and loved swimming and playing as all children do.

In the past year, Tami said his ostomy was reversed but he continued to have some anal leakage and he was teased and ostracized at least in part because of the smell. It is unfortunate that many early news reports perpetrated the stigma that a “colostomy bag” smells and was the reason for the bullying and his despair. Their headline choices were faulty and sensational.

Source: Seven Bridges GoFundMe Page

What we don’t know is what goes on in the mind of a young child and why Seven took the most drastic of actions. His brave parents are taking the rare step of speaking out in this most difficult time. They want other kids suffering bullying to be #SevenStrong and demand that adults take meaningful action. They want all children to understand the dangers of bullying and have already organized local benefit events and forums. We should all be teaching our children love and acceptance of all differences.

Many of you have reached out to me feeling devastated and lost by this tragedy. You are also asking what you can do in light of such sad news beyond reaching out to the family online.

I just ask that you live the mission of UOAA in your daily lives and continue to raise ostomy awareness, advocacy and education in your community. More work needs to be done to fulfill our vision of a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically and psychologically.

UOAA relies on all of you in our community and specifically nurses and physicians to identify families of children who have had ostomies (and reversals) and make them aware of ostomy support resources.

Please spread the word that caregivers, parents and children are welcome at all of our almost 300 affiliated support groups nationwide. We know they may be the only parents or young people in many groups, but we have to start somewhere to build a network and provide a welcoming atmosphere to all at our affiliated support groups. Luckily there are also online support groups for families on Facebook where parents can find each other.

Several years ago we identified pediatric specific resources and education as a pressing need. It is just a start to the work that needs to be done but in the past year we released for your use:

•  Every child matters! Pediatric Patient Bill of Rights, this is a statement of the rights to which infants, children, teens and their families should receive when facing ostomy surgery. It is a tool to empower parents/legal guardians to advocate for their child during all phases of care. These rights are meant to ensure a positive patient experience and best outcomes to achieve a desirable quality of life for the infant, child, or teen living with an ostomy and their family.
• Our Pediatric Messages of Hope Brochure, written for parents of children with ostomies, emphasizes the lives of three adults who had ostomy surgery as children who are now living full lives and sharing their messages of hope. You can email oa@ostomy.org for copies. 
• We also released our Pediatric Ostomy Resources document with links to support organizations, educational resources and teaching/comfort items such as the Awesome Ollie Ostomy Bear.

Online our Ostomy 101 infographic, emotional concerns after ostomy surgery, and surgery-specific ostomy guides are available to caregivers, parents, teachers, and school nurses and administrators.  Our New Ostomy Patients guides are mailed for free to all who need them. Let’s work to get these into the hands of those in need.

We have decided this year to also provide space for families to come together for peer-support and education at our 7th National Conference in Philadelphia in August. The dedicated pediatrics track will feature medical professionals from the Children’s Hospital of Philadelphia. Adults who have had ostomies since childhood such as model Jearlean Taylor will also be speaking to those gathered. In addition, our conference will have a session on the critical issue of emotional healing after surgery and will provide time to develop personal connections with other families.

We also support other organizations beyond UOAA. For years many of our affiliated support groups around the country have raised funds to send children to Youth Rally. This is a wonderful camp for children who have or one day may need an ostomy or intestinal/urinary diversion. We will continue to support their important mission and others in every way we can.

Now is a time of sadness but also a time to recommit to ostomy awareness to fight harmful stigmas. We can all educate not just on Ostomy Awareness Day but in your daily lives. Tell your story in an honest way. Point people to trusted ostomy resources online, speak out against bullying and injustice. Make a personal connection to the person distraught over the prospect of ostomy surgery in a social media post. Certify as an ostomy visitor. The list goes on, and the volunteers, board and staff of UOAA are here to help you change the life of the next person in need. Seven’s parents are speaking out and do not want his death to be in vain, and neither do I.

Our deepest condolences go out to the family and friends of Seven. We can’t even imagine the heartbreak and sadness you must be feeling from this tragedy.

Suicide Prevention Resources

Ostomy Support Resources