Living With a Trach Tube: Four Things to Know

Finley (left), Laynie, Presley, and Spencer each use a tracheostomy tube to breathe. 

Four-month-old Finley was struggling to breathe on her own. When doctors approached her parents about inserting a tracheostomy tube (often called a trach) through a hole in her windpipe, her mother, Alisa, was initially reluctant.

“I wanted this ‘normal’ baby. I wanted to come home from the hospital and have her learn to eat and walk and crawl,” Alisa recalls. “I just couldn’t see a way that would happen if Finley had this huge thing coming out of her neck. That’s all I saw in pictures online.”

Trachs are not as scary as they seem

Fortunately, Finley’s nurse showed Alisa and her husband pictures of trach tubes, which allow children to breathe when they can’t breathe normally through their nose and mouth. The nurse explained that Finley could leave the hospital if she had a trach — and that was the turning point for Alisa.

“When it became clear that Finley would need to start using the CPAP machine again or have the trach surgery and potentially go home, that was music to our ears,” Alisa says. 

Now 14 months old, Finley is thriving, and Alisa loves caring for her at home.

“Finley has never been happier. She breathes easier, she doesn’t get ‘air-hungry’ anymore. She just doesn’t struggle,” Alisa says. 

For Calyn and Trevor, whose 8-year-old daughter Laynie got a trach at 2 months old, the surgery was life-changing.

“As soon as Laynie got a trach, it was like my child came alive again. It’s amazing what your child can do when they can breathe easily and they’re not fighting for every breath,” Trevor expresses.

Your child doesn’t need to be limited by
their trach

Nine-year-old Presley has had a trach for more than 7 years, but her mom, Mindy, says their family continues to live a full life.

“When we first took a trip, it was to Park City, which is just 45 minutes from our house. Once we realized we could do that, we started going to California and lots of places around Utah. We’ve flown to Hawaii, we’ve gone on hot air balloon rides, and Presley plans on going to Mexico. We just live a really normal life,” Mindy says. “You have to give it more thought when you do go places, but it’s doable. You can still live the life you want to live and carry on as you were doing before the trach.”

Laynie has performed on a cheerleading team for 3 years and loves to be involved in family activities, including swimming.

“Her grandparents have a pool, and we all go swimming as a family probably 3 to 4 times a week during the summer. We just have to keep our hands on Laynie at all times, and we don’t let her go above her stomach in the water,” Calyn says. “She has a little mermaid tail she likes to splash around in.”

You have support all around you

Alisa recalls that her sister, who lives about 20 minutes away, attended the trach classes with Alisa and her husband.

“She came to all 5 of them, and she was learning right as we were learning. Then she came back and would practice on Finley and with us,” Alisa recalls. “I knew that out of everybody, she was going to be the closest family member, and that was a huge lifesaver.”

Alisa also connected with other moms at the hospital and through social media.

“There are a lot of Facebook communities for trach moms. Some of those moms who have older kids with trachs have all the tricks,” Alisa shares. “One of the NICU moms I met also became one of our best friends. She has a trach baby, and we text or call each other every single day. It’s been really nice to have a friend to lean on who’s going through the same thing we are.”

Mindy says her family, including her 6-year-old daughter, helps a lot with Presley’s trach care.

“Talk with your family and allow them to help. In the beginning, I really wanted full control. Allowing them to help and do things is actually going to save you a lot of stress, and it’s helpful for the child to know there are other people that can help them, too,” Mindy says. “If you let your kids be a part of trach care and explain things to them, it’s not scary.”

Your child can live a normal life

Trevor says Laynie’s doctors are amazed by how well she’s adjusted to the trach and other health problems.

“Laynie has the best attitude on the whole planet. Her trach has given her life, and she wouldn’t be here without it. Doctors can’t believe the progress she’s made,” Trevor says. “It’s pretty amazing what [your child] can accomplish.”

Mindy says Presley’s trach has become a natural part of life for their family.

“People always ask us how we do it, and I just let them know that this has become our new normal,” Mindy expresses. “You just have to have the mindset and the perception that your child can do anything. Decide what kind of life you want your child and your family to live, and figure out a way to make that happen.”

Learn more about tracheostomy tubes in the Intermountain Healthcare handout Let's Talk About: Tracheostomy and watch the Caring for Your Child With a Tracheostomy video below!