It hasn’t been an easy start for Mark Smith, a 20-month-old Fergus infant who has been tube fed since birth.
Feb. 9 to 15 is Feeding Tube Awareness Week, and Trish and Eric Smith, Mark’s parents, hopes their story will raise awareness about tube feeding.
“We aren’t looking for people to feel bad for Mark’s situation, but to raise awareness for tube feeding and organization’s that help families,” said Trish.
“So if we go to a restaurant, the mall, or any public place, and we are using syringes to feed our son, then people will understand what we’re doing and why. Hopefully with the awareness other families who are struggling being out there with the tube will be inspired to also not let the tube prevent them from living life.”
Mark was born with a condition called tracheoesphageal fistula, meaning his esophagus and trachea were attached. The doctors at Groves caught it within a few hours after he was born, and sent him to the Children’s Hospital in London.
Mark and his parents spent three months there as Mark had many complications. They were sent home in September, but returned again in October.
In December Mark was transferred to Sick Kids Hospital in Toronto. He has had six major operations, and over 10 procedures. His last operation occurred in June 2013 and he has not needed one since.
“The Ronald McDonald House makes our lives so much easier to be close to Mark at all times,” Trish said.
The theme for Tube Feeding Awareness Week is “Nothing holds us back,” and Mark is a prime example.
He still runs around, plays, climbs and gets into things like a normal child, although the tube prevented him from being as mobile as a young baby could be.
After maternity leave ended for Trish, she realized she had to quit her job as a teacher at Cornerstone Christian School in Guelph, and stay at home with Mark.
“We get a lot of emotional and spiritual support from our church community and family,” she said. “We can see God’s guidance helping us financially.”
A nurse from the Community Care Access Centre (CACC) visits Mark once a week, and takes care of him so Trish can take care of any errands or appointments she may have for herself.
A dietician visits Mark roughly every four to five weeks. He currently gets 300 millilitres of pureed food three times a day.
Trish told the Advertiser her and her husband tend to keep Mark inside or out of the public when he has a cold, because he has sensitive airways and a cold often turns into pneumonia.
Mark had pneumonia 12 times before the age of one, and for the first year of his life, he was hooked up to a pump, attached to an intravenous pole, which directed milk into his intestines for 18 hours of the day.
“Even when he was hooked up for 18 hours a day, it didn’t hold us back from enjoying life,” Trish said.
As long as Mark can accept the food he may be able to eat orally one day.
But since his esophagus doesn’t mobilize food very well he’ll have to continue eating through the tube for at least four to five years.
Mark is slowly starting to take drinks of water orally. It may be just a couple drops before he stops, but it’s a great start.
