If My Baby Needs a Trach: Part 1

The first time I heard the word “trach”, and had it explained to me, I had extreme nausea and felt I would faint. The emotional response was huge. Imagining my daughter with a ventilator hooked to her 24/7, a tube down her throat permanently, and not even being able to hear her voice was so terrifying that her death seemed easier. Death is something I can understand and imagine, if that makes sense. Life with a trached baby was something I’d never experienced, me or someone else – I didn’t know what it looked like, what to expect, and what my life would be like from now on. So, this is me now – writing to you – after my baby got a trach. I am pretending I am writing to me, 2 years ago, so I’m hoping it helps you too. This won’t be the best blog – in fact, it’s only for a certain category of people. Parents facing the choice of giving their child a trach – and that’s not very common! Bear with me, and I hope this helps you.

Disclaimer: every single trach baby is different. I am writing from my own experience. My daughter has a condition with transient symptoms, one being severe central apnea on an episodic basis. Nothing is wrong with her lungs or airway, it is all neurological, therefore my experiences will be based on that. 

What does it look like? 

This is something I thought was important, but in the moment it really wasn’t. Whenever I looked at pictures, it made me sick. For this blog, I have a feeling any moms who are reading this really want to know – and yet you may feel sick too. So, we’re going to do it the big picture style!

• Paige’s trach size is 3.5 inches from top to bottom. You can hold it in two fingers. It’s very light, and you can see through it well if you get the bivona flex tend. Its flimsy, like rubber, and the part that goes inside the trachea is very soft and flexible. It won’t hurt a bit!
• When it’s secured in Paige’s trachea, it looks like she has a blue choke necklace on with a white thing on her throat. You don’t see the hole; you only see the HME (heat moisture exchanger. It’s very easy to not think she has a hole in her throat – you only notice that when you do trach care and trach changes, especially. 

Will it hurt them?

Long story short, no, a trach doesn’t hurt. Paige uses a Bivona flextend which moves with her, and she can’t feel it. What is uncomfortable is when we do trach care and she must be restrained (she hates being restrained) and then when we do a trach change it always hurts a little bit, but that’s only once a month. She has had it for over 2 years and has never been in pain because of the trach. It looks like it hurts, but it doesn’t!

Will I hear their voice? 

This was the biggest one for me, and medical staff have trouble answering it since they only have one side. I am going to give you the truth of my experience with Paige (again, read the disclaimer!)

A trach sits underneath the vocal cords. We make noise by exhaling past our vocal cords. Therefore, with a trach, the breath escapes BEFORE it gets to the vocal cords – and therefore no voice can be heard. 

I did not hear Paige’s voice – crying or cooing – until about a month after the trach, when we were doing a trach change and I accidentally forgot to take the obturator out. The obturator is a little metal thing you put in the trach to harden it so you can easily place it correctly. It also closes the airway. Therefore, she was crying during the trach change and all the sudden her cry rang in my ears – and I started crying too. The beautiful sound of her cry was more than I could ever explain to you – then, you take the obturator out and the voice disappears, just like that. 

Doctors will say that the vocal cords aren’t affected – but that’s hard for us to understand if you don’t know how a voice works. When the trach airway is closed off, that means the voice now travels up the airway like it’s supposed to – and you hear her voice clear as day.

So, the short answer is, no you will not hear their voice especially in the first year. 

However, as I’m writing this, my daughter is cooing – and I hear it. She is not using the speaking valve (more about that to come) and you can hear the voice. It’s not as loud as it would be if she didn’t have a trach, due to “leakage”, but I can hear her express her emotions. 

Don’t be Ashamed for Asking Questions

If you’re in the position I was, know you’re not alone. Your questions are valid. Don’t be afraid to ask, and don’t be afraid to compare answers. The medical world is hard to understand sometimes – so I hope this little perspective from another mom helps!