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Meet Mia, Stefan and their tracheostomized son Tom

October 5, 2022 |

Mia and Stefan live in the south of the Netherlands with their son Tom, a tough boy just under a year and a half old, a cat and a few chickens.

This sounds like a typical family. But when Tom was 8 months old, he was tracheostomized because of an overgrowth syndrome. As a result of this syndrome, his tongue is very large, and his tongue base can block the airway when he sleeps. Thanks to the tracheostomy tube, this blockage is bypassed. Although the original prognosis was that Tom would need a tube until his 3rd or 4th birthday, this has now been positively adjusted and hopefully it can be removed before his 2nd birthday.

Tom is a typical toddler. He does everything one-year-olds do, except make noise: he clambers, he crawls, he puts everything in his mouth, likes to play outside, he draws and paints, he reads books, he sleeps, … And all over again the next day.

Tom doesn’t go to daycare as long as he has a tube, but once a week he goes to Toddler Pop. Other children and their parents go there, and they make music together. Other kids don’t react to his tube or to the fact that he doesn’t make a sound. With his strong mimicry, Tom makes clear what he feels or means without words. It is only when the tube needs to be cleaned that other children show interest and want to know what it is. Mia then explains that it is some kind of “snot vacuum cleaner”. They find that interesting.

Freevent XtraCare Mini

Tom uses the XtraCare Mini on his tube to ensure that the inhaled air is heated and humidified. Occasionally, a ‘shower nose’ is used to protect the tube from water while showering. Tom used another HME for a brief time after the operation, but it was not optimal for him and instead he started using the XtraCare Mini.

XtraCare Mini is available in 3 colors: white, blue, and pink. Tom usually wears the blue one. Given his young age, he obviously doesn’t care what color he wears yet, but his nieces and nephews are thrilled to be able to say that their nephew has a “blue nose” that you can take off and then use a “vacuum cleaner” to get all the snot out.

Mia and Stefan find it a great advantage that the air can pass through the filter from all sides with the XtraCare Mini. This makes it less likely to accidentally block the air supply through the HME, even during sleep. They were a bit afraid of that with the first HME, because it only had an opening at the front.

They also like that the HME is not completely full when Tom sneezes or coughs up a mucus plug.

The sound of Tom’s breathing sounds slightly different with the XtraCare Mini. His parents had to get used to that, but that is now ‘the new normal’.

Parents caring for tracheostomized children

While there can of course be many reasons why a child needs a tube, Mia and Stefan would like to give other parents the following advice: “Don’t worry too much, it runs the way it goes, and children can basically do everything with a tube.” Tom can also keep up with his peers, except for the speech for now.

They have contact with the parents of two other children with the same syndrome as Tom. They like that contact, especially to exchange practical tips (“Does the tube freeze in the winter?” or “What kind of scarf should they wear over the HME?”). In addition, they are members of a Facebook group for parents of currently and previously tracheostomized children, where they find a lot of information.

Contact with Atos Medical

Mia and Stefan appreciate the fact that Atos Medical’s Product Specialist can be reached easily, for example by sending a message or making a call with their questions. They appreciate the informal contact.

On to the future

Because Tom is so active and enterprising, accidents sometimes happen. He falls with some regularity, sometimes also on his HME. His parents find this worrying because the HME can get stuck on the tube in this way. Fortunately, Tom never really hurts himself with a fall like that – he gets up and keeps going.

And that’s what he is expected to do when the tube is allowed to be removed – that he will continue as a happy two-year-old who quickly catches up with his friends.

The testimonials relate to how one individual has experienced the use of Atos Medical products and not every person will get the same results. Atos Medical AB does not suggest, imply or make any claims other than those detailed in the product manual.