April 26, 2022

Harper’s exciting news – Tracheostomy decannulation

Meet Harper! She’s an adorable, smiley almost three-year-old who recently reached a major milestone in her journey.

Soon after birth, Harper was diagnosed with Tracheomalacia, meaning the cartilage in her trachea (windpipe) was floppy rather than rigid, causing airway blockages and breathing difficulties.

Harper’s mum Gemma says “Harper’s airway would collapse on itself with a cough, cry or even trying to poop.”

When Harper was just two months old, she had a permanent tracheostomy placed and by her first birthday she’d undergone 18 surgeries.

“The tracheostomy acted as a stent for her airway, allowing her to finally breathe on her own,” Gemma says.

Hannah’s House first met Harper and her parents when she was 3.5 months old. We have been supporting her with in-home care since she was discharged from Perth Children’s Hospital at six months old. 

At first doctors expected Harper’s tracheostomy might be removed by the time she was five or six years old when her cartilage had grown stronger. However, Harper has defied the oddsa month before her third birthday, she successful went through the decannulation process (removing her tracheostomy)! 

We asked Gemma to share a little about the lead up to this huge step in Harper’s journey and what comes next:

What is the process of decannulation like?

“Every child’s decannulation process is different. In Harper’s case, we downsized the tracheostomy size she had in and placed a cap on the end. By doing this, it encouraged her to breathe through her nose and mouth instead of breathing through the tracheostomy.

Harper’s first birthday.

Unfortunately in Harper’s case, she has a ginormous tracheostomy hole in her neck so she could still breathe around it. We had to encourage Harper to bypass breathing through the hole and focus on breathing through her nose and mouth.

But she worked it out so her doctors were happy to go ahead with the decannulation process.”

What does decannulation mean for Harper’s daily life and ongoing future?

By not having a tracheostomy, Harper can start kindergarten next year with a support worker or nurse going along with her. Harper can also be enrolled into day-care or move to the next class at her kindergym because she doesn’t need a support person with her at all times.

Since decannulation, Harper has found another volume level on her voice. If you had of asked us two years ago if we would be able to hear her beautiful voice or even be asking her to be quiet we would have said no way!

She is now eating a lot more orally too.

Harper is thriving!”

As Harper’s mum, how did you feel throughout this whole journey, going from placing the tracheostomy to decannulation?

“It was honestly a shock when they told us she would be getting a tracheostomy. We were always told it was the last resort but then that time came.

But the day after having her tracheostomy placed, she was breathing all by herself for the first time since she was born and that made everything worth it. It was the biggest relief! I’m a pretty positive person along with Ash (husband) so we always came into the hospital with good vibes and positive thoughts. Throughout Harper’s journey we have made sure that she never misses out and lives as “normal” life as possible.

Don’t get me wrong there have been times where I have cried, not slept, been angry at the world, asked the why me questions. But Ash and I have supported one another from day one and lifted each other up. Having Harper’s tracheostomy removed was both exciting and scary with a lot of unknowns. But again, we will ride this wild ride and enjoy the twists and turns it has in store for us.

Harper and Gemma regularly attend our Playtime Playgroups and family events. We love seeing Harper participate in fun play activities with the other children, such as Messy Mat and sensory play, as well as explore new places like Scitech, the Winter Festival and the WA Museum during Playgroup excursions! Gemma also enjoys catching up with the other mums and has herself become a wonderful support to other mums.

Our Playtime Program is kindly sponsored by Telethon 7 and WA Charity Direct. 

Hannah’s House is so grateful to have watched little Harper grow and we love seeing her little personality emerge and develop. We are so proud of Harper and can’t wait to see what’s next for this cheeky little girl!