Stoma Awareness Day: Theo's Story
For Stoma Awareness Day on October 7th, our stoma families have been sharing their stories and the importance of spreading stoma awareness.
A stoma is an opening on the abdomen that can be connected to either the digestive or urinary system.
When little Theo was born, mum Sarah had no idea about the challenges that would lie ahead for her little brave boy and the family before he was fitted with a stoma as part of several surgeries in the early stages of his life.
Sarah said: "Theo was born at 32+2 weeks gestation, weighing just 3lb. He seemed to be thriving and doing well until a few weeks later, when we were blue lighted to Glasgow Children's Hospital severely sick with NEC (necrotising enterocolitis, where the intestine becomes inflamed and may leak).
"Theo had three surgeries to try and save his life. In the end he was left with 54cm of bowel and we were told had he lost much more things would be considerably different.
"Over time, Theo has had more surgeries to help with nutrition to get him a better quality of life including, in September of 2022, a stoma. A year later it was decided that Theo would get his stoma reversal as it was deemed safe to do so at this point and his stoma had been very complex for quite some time.
"The stoma team were very helpful at all times to try and find what could work best for him, but getting a bag to stick was such an issue due to his skin and with him being a very active boy. In the end it was all worth it to make Theo safe and make sure we're going forward to the best quality of life we can possibly give him."
Sarah believes it's crucial that more families get to know what having a stoma is like for children, because her family was lucky to lean on others for support.
"I feel raising awareness is vital in all aspects of Theo’s journey," she added. "Having some knowledge to help understand you’re not alone is so important.
"There are people out there with similar stories who can help you to understand or even sometimes just vent. I also find awareness can also help ease some of the fears many people get on these journeys.
"Knowing your child is getting a stoma can often be a scary and daunting experience. We were fortunate to have met people along the way who's children have a stoma and just talking to them helped us to understand a lot more. It also helped us to compare resources used so we could ask to try new things we may not have known about otherwise."
Whether it's a special Christmas visit or daily activities on the ward, activities funded by Glasgow Children's Hospital Charity have helped Theo and his family through their journey.
"Theo often benefits from the charity-funded services at the hospital during his stay. We have a weekly slot in the sensory room where Theo gets a session every week and he loves to be able to move around freely and safely as he has CVI (cerebral visual impairment) and he loves the lights. He also loves spending time with the Play Team, whether it's singing, reading stories, playing or art, we find they have been an invaluable service for him.
"His room is covered in different art and activities he has done with them. They are also great to chat to to keep you sane some days and nothing is too much trouble for them. Then there are the many characters and sports teams who have been to meet Theo which is a great experience for him. One sports team even sang him a carol at Christmas time!
"On our toughest days, my partner and I are there to support each other. We have been each other’s strength through all this and we just have to look at Theo and see the strength he has to get through what he has in his short life to know we can do it too.
"The staff on our ward have also became like family and are always there for us when we need. They are so supportive."