Three years of pain, trauma and sleepless nights. One family visited over twenty healthcare professionals in their attempts to diagnose their son’s Tethered Oral Tissues (TOTS). None could. This is their heroic but needless story.
“All this over a piece of skin.” Barry McSweeney is emotional as he recounts the experience he and partner Hannah had with their four and a half-year-old son Billy. This small family of three have been through enormous heartache, and all because their son couldn’t get his TOTS diagnosed as a baby.
Tethered oral tissues are a medical condition, where a piece of skin called a frenulum, ties or restricts the tongue, lip or cheek. These ties can prevent correct tongue posture, muscle movement and development.
Tongue and lip ties are the most common kind of tethered tissues. This condition is not always symptomatic, but when it is, it can have serious consequences for children and their parents.
Experts like Dr Larry Kotlow, Dr Bobby Ghaheri and Dr James Bronson (all American health practitioners) believe tongue tie is strongly linked to conditions such as sleep apnoea, reflux, swallowing and speech issues, as well as digestive and other health problems.
Billy has both a tongue and lip tie. Barry says, “from day one we were saying he was tongue tied because his tongue was tied down, it never came outside his teeth, and we were saying it, and saying it but nobody looked.”
Instead, they’d say things like “If he’s able to eat toast he’s fine… or if he’s able to suck a bottle or a dodo he has no problem. Nobody, not one of them looked in his mouth.” Hannah adds, “They made us feel silly.”
A blonde-haired Billy is full of energy as he plays on the floor with his parents with his action figures including the Incredible Hulk and Spider-Man. Billy could be considered something of a superhero himself given what he has battled.
When his oral ties weren’t identified by any health professional early on, it left him unable to speak. He was completely non-verbal, the only times he made noise according to his parents were one sound “bubba bubba,” and the sounds of him crying as he dealt with his constant digestive issues.
Hannah says “The poor child, he was constipated from the day he was born,” as he grew, they tried five or six types of formula, special diets, anything they could find, but nothing helped their baby.
Sleep was another issue, they exclaim in unison, “We didn’t sleep for three years.” Barry continues “Yes, he’d be breathing away normally and then it was like he was caught for breath… then that would wake us, and we’re up saying what the hell!”
One night while running to her son’s bedside, Hannah fell and broke her jaw. She recalls “I had my jaw wired shut for ten weeks,” Barry interjects quipping, “it was kind of a blessing really!” They both erupt into laughter, relieved it is now a distant memory.
When he turned three years old, his digestive issues got worse, Hannah and Barry finish each other’s sentences as they explain “It was pretty traumatic for the child, it got so bad a couple of times, he’d be roaring crying on the toilet.”
Billy who was now using sign language to communicate was referred to the early intervention team. It was here that they would reach rock bottom. Hannah recalls with a somber expression “that’s where we were told he would never reach his milestones, and he’d only go backward, rather than forward in his development.”
How did this brutal diagnosis make them feel? Hannah cut in, as if she’s reliving the moment “I was really cross…I was so cross because I was like, how can they tell me this, when they’ve only met him for forty-five minutes to an hour, and we live with him”. The early intervention team recommended that Hannah and Barry send Billy to a special needs school.
They didn’t listen. Instead enrolling him in a mainstream pre-school. It was a teacher at this school who noticed Billy’s tongue tie and advised them to go to a doctor and demand he be put on a waiting list. Unfortunately, the waiting list was three years long, and not wanting more sleepless years full of trauma and tears, they searched elsewhere for help.
They then found Bridget and Tony O’Connor, who have a dental practice specializing in this condition in Cork. Hannah gratefully recounts “we took Billy (then four and a half) to see Bridget and in the first 10 minutes, she could tell us every single one of his problems and what was causing it. She was amazing, and she set the ball rolling really, really quickly.” Barry finishes the story. “It was December when she and Tony diagnosed it…and by January the operation was done.”
Billy before and following the release procedure
So once his oral ties were released, did he improve? ” Oh my God, he was like a new boy”. Within days he was speaking. His first word? Hannah beams, “he said Billy, it was amazing really, he was jumping up and down saying yay, I’m Billy, and I’m Billy.”
Hannah continues “he was also sleeping better, he slept and slept and slept.”
His digestive issues also cleared up. Barry recalls “After three days there was an improvement and after three months he had started going regularly.”
Hannah excitedly shares “He got assessed yesterday and they told us that they’re going to discharge him from the early intervention because there is absolutely no need for him to be there…and we saw another psychologist not so long ago, she said he’s above average for everything.”
Having been through this unfathomable experience, what do they think needs to change? “It’s a piece of skin…it’s just so simple…I don’t understand that, how did it take so long for somebody to help him”. She looks over at Barry, who is now visibly emotional and says with a warm smile, “Pull yourself together”. Hannah rubs his knee and following a manly sniffle, Barry emphatically states “We need to get the information out there.”
More information on TOTS (tethered oral tissues) treatment in Ireland: HSE Or contact one of these practitioners: Tony O’Connor (Cork): Dr. Rachel Quigley (Cork): Dr. Justin Roche (Tipperary): Dr Dermot Murnane (Athlone/Offaly): Dr Rose-Marie Daly (Tralee, Co Kerry).
