Meet The Members of Our Naked Neck Club
We know that a decannulation is a big deal – and for good reason! We want to recognize this monumental accomplishment and celebrate with you – which is we created the Naked Neck Club (NNC). A program that celebrates our trach-free patients, the club honors how far these kids have come and the journey it took to get to where they are today.
Meet a few of our members, and sign up to receive a medal and commemorative case of your own to hold all the memories from the trach days, and be featured on this page. Welcome to the club!
Gavin – age 3
Year of decannulation: 2016
Diagnosis: born at 23 weeks gestation, grade III subglottic stenosis from a failed intubation attempt
Gavin’s hobbies: Playing with cars – he loves his dump trucks and skid loader. He also loves to fingerpaint and play with his puppy Cooper.
How it felt when Gavin was decannulated: “Scary but amazing. Scary because the trach is the only thing we knew; it is a secure airway but amazing because of the little things like, driving alone with him, being able to dump water on his head during bath time, and not suctioning his trach all of the time!” – Gavin’s mom, Karry
Lauren – age 18
Year of decannulation: 2000
Diagnosis: Trisomy 12
Lauren’s hobbies: Going camping, shopping, and going for walks in the spring and summer. Lauren has been to Disneyland and would live there if she could!
How it felt when Lauren was decannulated: “We were so excited to have that trach out that we threw her last one as far as we could!” – Amy, Lauren’s mom
“We had wonderful nurses and care from PHS. You were with us day and night. We still have PHS for our feeding tube needs we don’t know as a family what we would do without you.”
Benjamin – age 2
Year of decannulation: 2017
Diagnosis: Tracheomalacia, chronic lung disease, and pulmonary hypertension secondary to extreme prematurity (born at 25 weeks).
Benjamin’s hobbies: Singing nursery rhymes, crawling over to the piano and hitting keys, and dancing to music
How it felt when Benjamin was decannulated: “There are no words… it was the day we felt would never come.” Marie, Benjamin’s mom.
“We love PHS! You guys were a Godsend to us in the midst of constant upheaval, uncertain diagnoses, and our journey to navigate the world of parenting a medically fragile child. Thank you for not only making our lives that much less complicated and stressful, but first treating us with kindness and respect.”
Brenden – age 6
Year of decannulation: 2012
Diagnosis: 25 week preemie with chronic lung disease of prematurity
Brenden’s hobbies: Bike riding, swimming, playing outside, dancing and singing
One word to describe how it felt when Brenden was decannulated: Thankful
“PHS helped up every step of the way! As parents of a child with a trach and feeding tube, they helped us gain confidence in our abilities to support and help Brenden thrive at home.”
Cayden – age 3
Year of decannulation: 2017
Diagnosis: Bronchopulmonary Dysplasia, or chronic lung disease
Cayden’s hobbies: Going outside for walks and play with trucks
How it felt when Cayden was decannulated: I felt like there should have been a bigger celebration or something but it was strange to have so much free time not having to do all of his trach cares!
Cameron
– age 2
Year of decannulation: 2018
Diagnosis: Prematurity and chronic lung disease, subglottic stenosis
Cayden’s hobbies: Playing with cars and tractors, playing with water, reading books
How it felt when Cameron was decannulated:Getting decannulated was life changing. Freedom. He was supposed to have surgery and be decannulated in January but because of complications it didn’t happen. So we are so grateful it finally happened! As scary as the trach can be at first, it was all worth it to get us where we are today!
Cora – age 5
Year of decannulation: 2019
Diagnosis: CHARGE Syndrome
Cora’s hobbies: Reading, taking walks, playing music
How it felt when Cora was decannulated: She was excited beforehand but nervous when it actually happened
Want to join the club? You’re just a click away from having your own memorabilia box and medal.
Originally published: May 17, 2017