Mark Smith loves to have his picture taken. “Again,” he says with a laugh after each click of the shutter.
As far as two-year-olds go, Mark is relatively ordinary, running circles around his family’s living room during an Advertiser visit on Jan. 8.
“Don’t chase the cats,” his mother Trish warns. He smiles and scampers away.
But Mark was born with esophageal atresia/tracheo-esophageal Fistula (EA/TEF) – a rare congenital birth defect in which the esophagus is shortened, closed off and improperly attached to the trachea.
Since birth, Mark has had six major surgeries and many minor procedures to improve his quality of life, but his condition still makes swallowing and breathing difficult – so he has been tube-fed since birth.
“Everything goes straight into his stomach and his esophagus doesn’t function the way it should, so he throws up a lot,” Trish explained. “His reflux is a big thing.”
Trish says the family is hopeful Mark will be able to eat normally in the future, but the big thing right now is conquering his oral aversion.
Having never ingested food through his mouth, the idea is entirely foreign to him.
“He doesn’t put any food near his mouth, once in awhile he takes a bit of water, but only very small amounts at a time,” Trish says. “One day he allowed us to put some yogurt on his lips, so that was a very big step for us.”
For the last year, Trish and her family have been trying to raise awareness about tube feeding and Mark’s condition. The number of children diagnosed with EA/TEF is small – only 1 in 3,500 – so in a rural community, Trish said it is not uncommon to “get looks” when they are out in public.
Because a portion of Mark’s trachea is not as stiff as it should be – sometimes called a “floppy trachea” – coughing spells are frequent.
“He has a really terrible-sounding cough, but it’s normal (for him),” Trish says. “We get a lot of looks in public because he sounds like he has a croup cough … when we go in a store and he does his cough, I feel the looks of ‘what are you doing with your child’.”
Currently there are no charities or fundraising events specific to Mark’s condition, so Trish encourages those who wish to make a contribution to donate to Sick Kids hospital or Ronald McDonald house.
“Mark has been in the hospital so often that we’ve made Ronald McDonald House our home quite a few times,” she says.
Social media sites such as Facebook have also been invaluable resources.
Trish says they are part of a few family support groups online which allow them to connect and share information with people from around the world. She says this keeps them from feeling isolated.
“We use Facebook a lot. We find diagrams and information online and then post that on Facebook and share it with friends and family.”
She says Mark is also part of a new grouping of children of various ages with EA/TEF at Sick Kids hospital and this helps them foresee future complications they may encounter.
“It’s not really a research group per-se but if they’re monitoring children who are 14 or 15 and what problems they’re having a lot more closely, then that might help Mark when he gets to be that age,” she said.
She added the most difficult part of the journey this far has been the uncertainty.
“It’s the uncertainty of what is coming next … There have been many times when things were very intense with Mark’s health, times when he was in the ICU and things didn’t necessarily look the greatest.”
During the last two years, Trish says she and her husband Eric have gotten through the scary times by relying on their faith and the support of family and friends.
“We knew that Mark was in God’s hands no matter what,” she said.
Ultimately Trish believes more recognition is needed about many rare conditions to develop a stronger sense of understanding.
“There’s a lot of different conditions that children can have, but I think it’s good that more and more people are aware of [them],” she said.
“Part of the awareness is an understanding that everyone’s situation is different.”
