Kaitlyn O’Brien doesn’t shy away from talking about her below-the-waist challenges. To urinate, she needs to insert a tube into an opening in her abdomen. To pass stool, she uses another tube inside her abdomen to flush out her intestines.

“This is really the only normal I know,” the Seneca Practical Nursing student said. “I don’t know what it’s like to live any other way. I still go to school. I’ve run marathons. I try not to let my illness hold me back.”

You may have seen Ms. O’Brien in a recent commercial for SickKids — the Hospital for Sick Children — in which she talks about the rare and incurable VACTERL Syndrome. Each letter of VACTERL stands for a different birth defect in the spine, anus, heart, windpipe and esophagus, kidneys and limbs. People with VACTERL may have some variety or all of the abnormalities. Ms. O’Brien has all of them.

When she was one day old, Ms. O’Brien had her first surgery at SickKids. By the time she was 18, she had had 52 surgeries and six ostomies (openings in the abdomen surgically created to reroute bodily waste). Since “graduating” from SickKids, Ms. O’Brien has had seven more surgeries at other hospitals. Each year, she needs to have a procedure to change the tube that helps her eliminate stool.

“I lived at SickKids for the first two years of my life and didn’t go home,” she said. “The doctors created a butthole for me, but then I needed more surgeries on my bowel, bladder and digestive system to help me do the everyday things. I was in and out of the hospital and was often too weak to eat.”

Ms. O’Brien had a feeding tube in the middle of her abdomen for the first 16 years of her life. She used to throw up from eating until doctors removed that bodily function for her.

“It means I need to watch what I eat,” she said. “If I eat something bad, I don’t have the ability to vomit and get it out of my system.”

Ms. O’Brien explains that the procedure to stop stomach acid from backing up is called fundoplication. The word is just one of the many medical terms she can rhyme off without hesitation as a lifelong student of her condition.

“In class, the teacher would be talking about a procedure and I’d say, ‘Oh yeah, I’ve had that done,’” she said. “I’ve always been very open about my condition, and I can see that it’s helpful for the other students to see and hear from someone who has gone through that. It also helps them to understand more about the care they are going to provide as nurses.”

While the 24-year-old had originally wanted to get into a nursing degree program right out of high school, she has taken a different academic path to achieve her career goal.

“I missed a lot of classes in high school, and my grades weren’t the best,” said Ms. O’Brien, who completed a bachelor’s degree in health studies at York University before coming to Seneca. “It’s taking me a bit longer to get to where I want to be, but it has been really great to get hands-on experience at Seneca.”

Ms. O’Brien plans to eventually apply for the Seneca Nursing degree program. 

Before that, she’ll be busy organizing the fifth annual A Walk in the 6 for SickKids fundraiser taking place this summer. The event, which she co-founded, is part of Ms. O’Brien’s ongoing effort to support the hospital where she received life-saving treatments. When she was 12, Ms. O’Brien became a SickKids patient ambassador and created a fund in her name. She has since raised more than $50,000.

“Having grown up surrounded by caring and loving nurses made me want to give back and use my experience to help other patients the way I was helped,” she said. “I spent the majority of my life in the hospital. I was exposed to that. I want to work at SickKids one day as a nurse and make it a full circle. It’s my second home.”