Many of the children admitted to the inpatient rehabilitation unit at Kennedy Krieger have experienced a trauma or illness that resulted in needing a procedure called a tracheostomy. The procedure involves placing a tube in a patient’s neck to help him breathe, but the downside is that it robs them of the ability to speak. Seeing a child with a “trach” tube in place can be heartbreaking for the casual observer. Seeing your own child with it is devastating.
As a mom, it is hard to imagine my boys without the ability to speak. Not hearing their voices greet me or saying “I love you, Mommy” would be unbearable. I am inspired by parents who learn to live with this loss.
However, many of our patients are able to recover and ultimately get their tracheostomy tubes removed.
I should probably tell you here that I am a huge Disney fan. And every time I encounter a child who’s undergone a tracheostomy, I’m reminded of one of my favorite Disney characters, Ariel, from the Little Mermaid. When her voice was stolen from her by an evil witch, it was only through the miracle of love that she recovered the ability to speak and sing.
For kids with a tracheostomy, though, it takes much more than a kiss to restore their voices. The first step in the process is the placement of a speaking valve. And, even without the kisses and fireworks, the first time that valve is placed is an emotional experience.
One of my patients, Sarah Eber, was a typical bubbly teen until she had a severe illness called Acute Respiratory Distress Syndrome (ARDS). ARDS is a life threatening condition in which an infection causes an inflammatory response which can destroy lung tissue. Many do not survive ARDS, especially older people. Luckily, Sarah was young and healthy before she ended up in the ICU on a machine that was breathing for her.
Thankfully, Sarah survived ARDS. She was left weak and required a ventilator to help her breathe when she became my patient on Kennedy Krieger’s inpatient rehabilitation unit. During her time with us, she grew stronger and stronger. She eventually recovered enough to breathe on her own and she started using a speaking valve. Once she could speak again, Sarah’s true spirit and personality was able to shine. I will never forget Sarah’s smiling face as she used her voice for the first time in months. It was beautiful.
I remember watching Sarah call her parents for the first time with her speaking valve. She was beaming. I can only imagine how relieved her mother and father were to hear their girl again. Their joy was evident on their faces when they saw her in person following that special phone call.
Of course, for our patients, the process of recovering their speech and voices isn’t as quick as for Ariel. It takes time and practice and therapy. But just like Ariel, our kids face enormous challenges to return to health and ‘sing’ again. And just like Ariel, their emotional triumphs seem made for the big screen.