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5th January 2018

Breathing in gratitude

Year-end is often a time for reflection and expressing gratitude. For Karen Phillips, the customised tracheostomy tube that allows her son Michael to breathe is at the top of her list of things to be thankful for.

Michael was nine months old when he was diagnosed with Spinal Muscular Atrophy (SMA), a rare genetic disorder that causes progressive muscle wasting, which can also affect breathing and swallowing. Although the 35-year-old has full brain function as well as feeling in his body, he doesn’t have the strength to move his arms and legs. Michael also has to lie on his back in order to breathe, with the assistance of a ventilator and tracheostomy (or “trach”) tube ‒ a curved tube that’s inserted into a hole in his neck and windpipe.

He was first “trached” in 2007, but ran into problems with the standard tracheostomy tubes available. “His first trach tubes were made out of plastic,” explains Karen. This scratched his tracheal wall and resulted in potentially life-threatening infections. Doctors tried various tubes but none worked for Michael’s body and specific circumstances. He says, for instance, that one of the tubes he had inserted was like “breathing through a straw” and others caused him to cough constantly.

Karen and Michael didn’t give up. They were determined to find a solution and began looking into other options which led them to a company that designed custom-made trach tubes. “We did our homework. This is not a one-size-fits-all population,” emphasises Karen. After doctors took x-rays, photos and precise measurements of Michael’s windpipe and tracheostomy (the hole in his neck where the tube is inserted), they were able to design a tailor-made tube with a special cuff that blocks air leakage and assures that he’s well oxygenated.

Karen is thrilled with the result, as is Michael. “It feels absolutely perfect; I don’t even feel it. With the other tracheostomy cuffs, I could always feel right where it sat,” he says, adding that it has yet to leak. Now that his trach tube has been sorted, Michael can focus on the activities that he is able to do, like messaging friends all over the world using a thumb tapping system and a computer monitor that’s suspended above his head. He can also “speak” this way with communication equipment similar to that used by theoretical physicist Stephen Hawking, who has motor neuron disease.

As the saying goes, there is always something to be thankful for.

“There’s no sense being upset about the things you can’t change,” says Michael. “I’ve always been this way so I don’t really know any other way to be.”

Recent studies suggest between one and two people in every 100,000 worldwide have a type of SMA. More information about the disorder can be found at SMA Support UK.

Picture Rights: TVM