Help Baby Billie Get Her Voice

Hi! My name is Ben, and this is my daughter, Billie.

Billie is a wonderful, bright-eyed, happy little girl. She loves to watch cars drive by our house, she smiles every time she sees herself in the mirror, and she is happiest when she is being flown around the house like a chubby airplane.

She was also born without a voice.

Back in June, we were so excited to meet our new baby girl. All the tests and check-ups pointed towards the birth of a perfectly healthy baby, and the delivery went off without a hitch. Even when she came out silently and had trouble breathing the doctor assured us that sometimes babies just have a bit of trouble when they're born and that a night in the NICU would have her right as rain. And so we waited, somewhat dampened but still hopeful, to take her home.

A few days later we heard the news that would change our whole life: our baby girl had an extremely rare condition aptly named CHAOS. CHAOS stands for "Congenital High Airway Obstruction Syndrome". In short, the opening where her vocal cords should be is fused together, leaving an airway the size of a straight pin for her to breathe through. As I said, CHAOS is extremely rare; since 1989, fewer than 50 cases have been reported, and many of those babies die because they can't breathe long enough to be treated. Miraculously, Billie was able to breathe on her own for an entire day before receiving an emergency tracheostomy, but that was only the beginning; in time, we learned just how difficult CHAOS would make our family's life.

The most obvious symptom of CHAOS is that Billie can't vocalize. As someone for whom music is very important, this is the part that was hardest for me to accept. Hearing my daughter sing silly little songs, and singing them with her, was something I had looked forward to since deciding to have a kid. That was and still is devastating to me.

Because she can't cry, we can't just wait for her to tell us when she needs something like most babies either. We have to watch her like hawks at all hours of the day and night, especially because she is so active.

She also needs regular airway cleanings since she can't cough like most of us, so every few hours or so we stick a small vacuum tube down her throat and suck all the gunk out for her. She hates it, but it helps her breathe. She also requires an hour of physical therapy every day to help clear out her lungs, which is very hard for her because she just wants to play.

In addition to her airway problems, Billie has been designated as "failure to thrive" because her long stay in the NICU put her behind in her eating development. We fortify her milk with formula and microlipids, and we do even more physical therapy to stretch her cheek muscles so she can get a good latch.

She needs other extra care, such as daily trach maintenance and speech therapy (yes, even though she can't speak), but there isn't enough space to describe it all. We are even learning ASL to give her all the communication skills she may want.

Suffice it to say, it's been a crazy ride.

However, there's a very bright light at the end of this tunnel: one day, when she's older, Billie will have the opportunity to receive a life-changing surgery. This surgery will create an airway (removing the need for a trach and all that comes with it) and will attempt to give her artificial vocal cords so that she can speak, albeit with a scratchy, weak voice. We don't know when this can happen, and there is no guarantee that she will even get a voice, but the hope for that procedure keeps us going. However, to get there, we need some help.

We have tried for months to get assistance from the state and any other programs we could find, but even though multiple doctors have told us that full-time nursing is a medical necessity in Billie's case, insurance and the state of Utah have repeatedly denied her that, only offering 60 days of part-time nursing per year.

According to Billie's doctors, though, she cannot be left alone, ever. Because she has no airway, if the trach ever comes out she only has a couple minutes to live. Anyone with children knows that they will grab at anything and everything that's put in front of them, and Billie is no exception. So, we watch her all the time, and at night we sleep in shifts. Needless to say, the stress of knowing that our baby could very easily die if we take our eyes off her for even a moment is immense. In the words of her doctor, the task is "impossible, but there isn't another option."

With no other options, both my wife and I were forced to quit our jobs. It was simply too difficult to juggle work and Billie on only a few hours of sleep every night. In the meantime, though, Billie's hospital bills continue to grow, and we aren't sure when we will be able to go back to work since we will need a full-time nurse before we can even think about it. We aren't even able to apply for unemployment because that's only for those who are available to work but can't find a job. Because of this, we were forced to move and stay with family, and while it's wonderful that we have that option, it isn't sustainable.

That's why we set up this campaign. Billie is a strong, special kid, and she deserves the best chance to show it that she can get. As much as it pains us to admit, though, we can't give her that chance right now. Not alone, anyway. We need you. Your donation will be used to cover medical expenses for Billie and support our family until we are able to support ourselves.

Without a voice, Billie has a tough road ahead of her. She won't be able to speak up for herself and get the life she deserves without you. Please help us give her that chance; help us beat CHAOS give Billie a voice, so that one day she can sing, laugh, shout, and show the world how amazing she is.