The family of a 14-year-old Tillsonburg, Ont., girl is hoping surgery in the United States can help her get her life back, but first, they need enough money to make it happen.
Kaytlyn McKibbon has bilateral thoracic outlet syndrome (TOS), which has left her unable to lift her arms above her head and requiring portable oxygen.
TOS occurs when there is too much pressure on the nerves or blood vessels in the space between the collarbone and top rib. People with TOS can have a wide range of symptoms, but McKibbon’s case is particularly severe and impacts both sides of her body.
McKibbon always had “cracky” shoulders, she said, but about two years ago her left arm went numb and purple. A year later, the same thing happened to her right arm.
“You know when someone takes your blood pressure? It’s like that but your hand’s numb and it really hurts like someone’s almost squeezing it way too tight,” she said.
While doctors quickly determined she had blood clots, it took some time to determine the cause of the clots.
Eventually, she was diagnosed with TOS, which is caused by too much pressure on the nerves or blood vessels between the collarbone and top rib.
McKibbon said that based on a Facebook page for those with TOS, most people have it on one side, not both.
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“I think there’s two other people that actually have clots because of it in their lungs,” she said.
“The problem is most surgeons don’t like to cut when you have clots in your lung, period. I have clots in my lung and my veins are impinged and arteries, which they don’t like dealing with that on top of that.”
There are other challenges too, she said. “When they do the surgery, they would have to be super close near my spinal cord.”
Her father, Dan McKibbon, said the surgery involves removing a section of rib and there is only a handful of surgeons in Ontario who perform this kind of surgery.
One surgeon at St. Michael’s Hospital in Toronto agreed to perform the surgery, he said, but not until she turned 17 due to concerns about how the rib would continue to grow into early adulthood, possibly bringing it back in contact with the nerves and blood vessels.
“The problem we have with the timeline for doing this is … Kaytlyn’s condition seems to be worsening,” he said.
“The longer we wait, the greater the chance of additional clots potentially moving into areas like the heart, the brain.”
That sense of urgency prompted them to keep looking. The elder McKibbon said they’ve consulted with a specialist in Boston, Mass., Dr. Dean Donahue, whose process involves taking out the entire rib on both sides so there is no concern of it growing back into the impacted area.
While the Massachusetts General Hospital Division of Thoracic Surgery was unable to comment on specific case information, it did confirm the surgery process to Global News over the phone. The hospital said whether to perform such a surgery on a teenager is decided on a case-by-case basis, but is not out of the question.
Now, the family said it’s just a matter of financing the $294,000 cost of the two surgeries.
“I think we can probably get the first surgery now with the help we’re receiving and we have some equity. In my case, I sold my home and her mother is looking at refinancing hers as well,” he said.
“Between that and the help we’re getting right now, I think we could probably pull off one and we would start with the worst side. After that, there would be a period to kind of recover from that surgery and then ideally go for the other one to get it done.”
A GoFundMe campaign had raised over $36,000 by 12:30 p.m. Friday.
As for what she’s looking forward to most after surgery, the younger McKibbon mentioned swimming, curling and just hanging out with her friends, doing what they can do.
“Not to mention not carrying around portable oxygen, that would be lovely,” she laughed.