Today (19/05/19) is the start of Global Tracheostomy Tube Awareness Week. A tracheostomy is an opening created at the front of the neck so a tube can be inserted into your windpipe to help you breathe. There are numerous reasons as to why a person may require a tracheostomy, so I thought to mark the week I would introduce you to some fellow neck breathers and their stories.
My Story
My airway collapsed when I was born meaning I can't breathe through my mouth or nose. I had my tracheostomy put in when I was 2 weeks old and will have it for life. I have had several reconstruction attempts and stents fitted to try and and strengthen my airway, unfortunately the repair work has not been successful.
Since I rely solely on my tracheostomy for breathing, I get out of breath much quicker than the average person does, so I rely on a manual wheelchair when out and about.
Mackenzie
"My name is MacKenzie. I am 15 years old. In December 2016, I got a Tracheostomy. Prior to that I had a lot of issues with severe asthma and recurring pneumonia. After many ICU stays and a lot of work keeping my airways clear and me breathing, it was decided the best option for me was to have a Tracheostomy. Ever since, I have had less hospital admissions and recover from illnesses faster. I am able to spend less energy on trying to breathe and enjoy life more." - Lynda Henneberry.
You can read more about Mackenzie's story on her Instagram here.
Phoenix
"Phoenix is 2.5yrs old, he has been a ‘neck breather’ since April 2017. He had his tracheostomy placed after multiple failed attempts to extubate (remove his breathing tube), aspiration complications, and frequent oxygen desaturations.
Phoenix was born with a chromosomal defect called 22q11.2 deletion syndrome (DiGeorge Syndrome), which in hand caused him to have multiple complex congenital heart defects. He was also born with a congenital virus he contracted in utero, Cytomegalovirus (CMV).
We are not 100% sure which specific diagnosis caused Phoenix to require his trach, as all of his diagnoses can play a part in requiring a tracheostomy. We do not let Phoenix’s trach limit him. We see it as a part of him, a little extra accessory that makes him who he is, and allows him to live to his full potential. Having a trach doesn’t have to limit you, and I think that’s so important for new parents, or adults that are looking at the ‘trach life’ in their potential future. To learn more about Phoenix’s journey, and our version of the ‘trach life’ you can follow @phoenix_thefighter on Instagram" - Dominique Barnes
Lily
"This is Lily, my one pound, 24 week surviving twin. She has overcome quite a bit in her first seven months, including a bowel perforation, three surgeries, a jejunostomy, several infections, high frequency oscillating ventilation, and most recently a tracheostomy. Lily has severe bronchiopulmonary dysplasia, so she will rely on a ventilator until her lungs grow larger. She has been in the NICU for over 250 days and we’re hoping to bring her home soon. The long-term plan is that she will be decannulated before kindergarten, though she doesn’t seem to mind- she loves her trach!" - Jessica Wolff
You can read more about Lily's story on her Instagram here.
Thomas
"This Thomas, he has a Tracheostomy due to long term ventilations from his heart surgeries. He has Hypoplastic Right Heart Syndrome. It helps him because underneath his voice box his airway is 2mm. He’s due a reconstruction soon so hopefully that works for him." - Ryan King.
You can read more about Thomas's story on his Facebook page here.
Alyssa
"Hey everyone my name is Alyssa and I've had a trach since I was a couple of months old.
I have a spinal cord injury due to my birth doctor using forceps and breaking my c1-c2 which led me to not breathing.
The trach and breathing machine helps me breath 24/7." - Alyssa Iorio.
You can read more about Alyssa's story on her Instagram here.
Joel
"Joel was born with a rare defect called a Laryngeal Cleft. This meant he had an opening between his wind and food pipe that would let anything he swallowed enter onto his lungs. He was fitted with a tracheostomy at 2 weeks old and still has it today 3 years on. Although his cleft is repaired Joel has an extremely weak airway so the tracheostomy is vital in giving him a safe airway and allowing him to breathe normally." - Claire Baines.
Thank you to everyone who took part in this blog post, you're all amazing! To learn more about 'neck breathers' take a look at the official Facebook page for Global Tracheostomy Tube Awareness Week here.