by Marty Barnes
Our daughter, Casey, was born with MANY medical complications. One major complication was that she did not have the ability to gag, suck, or swallow. This left her airway at constant risk. Add this to her reflux and GI issues, and we spent a LOT of time suctioning her airway to prevent aspiration and infection.
Very early on, we noticed that Casey’s care team was divided. Some felt (strongly) that Casey should get a trach, while the other half did not agree that it was necessary or that it would even help. Ultimately, it was up to us as her parents to decide what made the most sense.
Some children with trachs are able to still go swimming, make sounds or talk, and some are even able to eat by mouth. We know that a trach does not immediately equal a lesser quality of life. For Casey, however, we felt that it would.
While we did suction, some days nonstop, we could tell that all of her secretions were above the location where a trach would be. She usually hid them all just behind her tonsils. While a trach would make her care easier in the event of aspirations and hospital procedures, it would not help with her day-to-day care. We would still have to suction frequently.
She had little to no purposeful movement, and the only movement she was able to consistently perform was a head nod. Sure, she would possibly be able to relearn that movement, but immediately after having a trach she would not be able to do this. The risk of losing the head nod was huge for us.
One of Casey’s most favorite things was swimming. Her care team advised that if she were to get a trach that swimming would no longer be an option (at least not in her immediate future). Taking away one of the few activities we knew she loved was not an option for us at all.
Then there was her voice. She had to work very hard to make sounds. We knew her sounds well. Again, there was a chance she could relearn this, but the thought of taking it away was not worth the risk to us.
If Casey had lower secretions where we felt a trach would help, if Casey had more body control so that a trach would not completely impede her, or if Casey had frequent hospitalizations due to aspiration infections, we would have had to consider a trach. When we weighed all of our options, a trach simply was not the answer for us.
Risks versus Benefits
With each surgery there is risk. With each new stoma there is additional infection risk. The cons far outweighed the pros for us when it came to a trach. Eventually, Casey’s entire care team came around and all agreed that it was not the route for her.
Casey passed away on March 10, 2016. Her body had been fighting to stay alive since the moment she was born, and it finally just gave up. I am so glad that we did not get a trach. I think that we made the best decision for our child, and that gave us the best quality of life that we could attain for her during these nearly 10 years.
Each child is unique, and each family needs to really do its homework and talk with care teams when making this type of decision. We know many families that have a trach and that trach has improved the quality of life for their child. As a parent, it is our job to know our children and to trust our instincts on what is best for them.