Tracheostomy in the NICU: The Test Family’s Experience

November 7, 2022

This article is sponsored by Neotech

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Photo courtesy of the Test family.

For NICU mom Teresa, news that her daughter, Teigan, needed a tracheostomy came after her family had already been in the NICU for three months. Teigan was born with an omphalocele, a condition in which some of her abdominal organs formed on the outside of her body in a small sack in her umbilical cord. Due to her organs growing on the outside of her body, Teigan’s chest cavity was smaller than expected. She now faced the issue of having underdeveloped lungs.

After spending weeks trying to wean Teigan off of CPAP and oxygen, Teresa and her husband, Michael, faced the hardest decision they’d had yet to make as new parents: the decision to undergo tracheostomy surgery to aid in Teigan’s breathing.

What is a tracheostomy?

A tracheostomy is a hole in the windpipe (trachea) created by a surgeon to help a person breathe. This hole, called a stoma, allows air to flow into the lungs, instead of coming through the nose and mouth. A tracheostomy tube is inserted into the stoma to keep the hole open and provide an entryway for air to enter the lungs.

Why would a baby need a tracheostomy?

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Photo courtesy of the Test family.

There are many reasons why a baby or child may need a tracheostomy. The most common reason is to relieve severe breathing difficulties due to a blockage or narrowing in the upper airway, or in Teigan’s case, underdeveloped lungs.

“We ultimately knew that having Teigan undergo a tracheostomy surgery would be the best thing for her,” said Teresa. Teigan’s omphalocele was healing nicely, and she and Michael desperately wanted to take her home after five months of back and forth visits to the NICU.

Still, the thought of sending their six-month-old baby in for surgery was terrifying. “You worry about how they will handle it being so small, all the things that could go wrong, and then what recovery would look like.”

Approximately half of all pediatric tracheostomies are performed in infants younger than one year.1 Still, tracheostomy is only performed in just over 2% of patients in pediatric or neonatal ICU.2

Daily life with a trach

Coming home from the NICU with a trach involves a lot of preparation. Teigan was 7-and-a-half months old and fully dependent on a ventilator to breathe. The family had 24/7 home health care that provided them with nurses around the clock. Teresa came up with a daily schedule that the nurses could follow once she went back to work.

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Photo courtesy of the Test family.

A day in the life of Teigan typically consisted of a lot of play time on the ground with various toys, tummy time to work on neck and back strength, reading books, listening to music and naps. She also had occupational and speech therapy in the home once a week. As Teigan got older and less dependent on the vent, the family ventured to parks and other kid-friendly places. “Although we always had a lot of things to pack with us on our adventures, it was always well worth it to be able to give Teigan the chance to experience life like any other child her age.”

As Teigan got older, she understood what her trach did for her and how it helped her to breathe. “Kids at the park would ask her, ‘What’s that?’” as they pointed to her neck,” Teresa recalls. “She would proudly respond with, ‘Oh this! It’s my trach. It helps me breathe.’”

Skin irritation with trach ties

Skin irritation with trach ties, especially around the stoma area where secretions often collect is common.

“When we were in the hospital we used the EZCare Softouch Trach Ties because I liked the lining on the inside of them and felt they were the best at keeping Teigan’s neck cool and keeping the irritation at a minimum,” says Teresa.

Other ways to keep skin irritation to a minimum are by:

  • Doing trach care daily. If you aren’t able to change out your trach ties daily, make sure you clean the neck area with soap and water and change the dressing around the stoma area.
  • Keeping the dressing around the stoma area dry. If there are more secretions collecting around the stoma area, you may want to change the dressing more throughout the day.
  • Using a powder-like substance around the neck area to keep the area dry. Teresa recommends cornstarch or Desenex.

Life beyond the trach

tracheostomy, Hand to Hold, Neotech, EZCare Softouch

Photo courtesy of the test family.

Teigan was decannulated at four years old and is thriving! And it’s important to Teresa and Michael that she knows her story and the incredible journey she has overcome.

“We often show her a photo book we created with all of the pictures of her time in the NICU and even before when she was in ‘mommy’s tummy,’” says Teresa. “We feel that showing her these photos and sharing her story with her is such a beautiful thing she can find pride and strength in and always carry with her.”





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