Let’s Close the Gap Together
The time has come for an organized movement to finally bring this hidden cleft into full view.
By Carolyn Schultz, LCN Co-Founder and President
This is my son Theo. Like any parent, I absolutely adore him.
But unlike most parents, I wasn’t able to feed Theo when he was born 20 years ago. I didn’t know it at the time, but he was born with a laryngeal cleft. And in the days and weeks that followed, our lives changed forever as we embarked on a long and arduous journey to help him.
I won’t rehash Theo’s story here, but it’s actually not surprising or unique in the laryngeal cleft community. When you’re born with a laryngeal cleft, you’re going to have problems drinking and breathing. And drinking and breathing are pretty important. If you can’t manage both, you will die without some sort of intervention.
Having a baby with a laryngeal cleft is frightening. There’s nothing more instinctively important than being able to feed your child. Witnessing that basic function not working is distressing and confusing. And watching your child continue to struggle, without knowing why or how to help, causes anguish at the most primal level.
That’s why Laryngeal Cleft Network was created. Because 20 years have passed since Theo was born, and babies are still struggling with this birth defect. Parents are still confused and distressed. Some providers are still unaware that it exists or how to screen for it. Many specialists are still unsure how to deal with it. And that’s mainly because…
It’s hidden.
It’s buried deep in the throat, and you can’t see a laryngeal cleft without intentionally looking for it during an operation. This makes things tricky.
Cleft lips and palates are easily seen, widely understood, and well supported by a variety of organizations. However, laryngeal clefts have remained largely unknown and misunderstood, because they are hidden and not easily revealed.
All of this confusion is truly no one’s fault. We’ve all just been unaware.
The good news is there are now some specialists who are aware of and experienced with this birth defect. Surgeons have been repairing these clefts for about 30 years, with varying degrees of success. And parents are starting to talk about laryngeal clefts. There’s even a sprinkling of mentions on social media, and a few online support groups have sprung up as well.
That’s all very encouraging and bodes well for the future.
Because the time has come for an organized movement to finally bring this hidden cleft into full view.
We need parents to know it exists. We need providers to recognize the symptoms. We need specialists to know how to treat it, or at least which surgeons specialize in it.
We all want the same thing for these kids: we all want to see them thrive. Parents, family members, providers, specialists - we all want these kids to be able to swallow and breathe. To hydrate and grow. To take a bath without choking. To just be a kid and not struggle with essential bodily functions that most people take for granted.
So how do we create a brighter future for these kids? By sharing experiences and knowledge and uniting our efforts.
If you’re a parent, share your hero’s journey on our website so that medical providers and other families can better understand and learn from your struggles. If you’re a provider, stay engaged with our site as we have future plans to improve the awareness and understanding of this birth defect. If you’re a specialist, write an article for our blog to share your knowledge or submit a study for our resource section. If you have expertise in an area - or simply time - volunteer to help. And yes, we will gratefully accept any donations that you are willing to give to help us in this movement.
I’m already seeing glimmers of hope for the future.
I recently heard about a baby born in India with a severe laryngeal cleft. Doctors there tried to help the infant, but had little experience and could only do so much. Ultimately, an experienced ENT from Texas made the trek to India and performed surgery on the baby. What an inspiring example of working together to help a child with a laryngeal cleft.
In the research arena, scientists and doctors are starting to study the causes of laryngeal clefts. The National Institutes of Health recently awarded a grant to study them. Soon, interested families will be able to get involved with that study through this very website.
Now newly diagnosed families (and providers) can come to this site to learn more about this birth defect. They can read other families’ stories and expert articles. Seasoned families can share their hard-won knowledge and experiences. Surgeons can share their pertinent studies and discuss why they use certain techniques (which vary.) These are all ways we can move one step closer to a future where laryngeal clefts are quickly diagnosed and effectively treated.
LCN’s vision for the future is: “We dream of the day laryngeal clefts no longer exist.”
While I long for that day, I realize it may not happen in my lifetime. However, with the growing awareness and understanding of laryngeal clefts, the time has come to close the many gaps caused by this hidden cleft. We ask you all to get involved, spread the word, stay engaged, and work together.