The Power of Community Connections:
Why sharing stories and connecting with others is key to improving the lives of children born with a laryngeal cleft.
By Deb Bachman, LCN Co-Founder and Program Director
Like many people born with a laryngeal cleft, my 25-year-old son, Markus, has spent a lot of time in the hospital. After long hospital stays when he was younger, I would spend hours researching at the local university medical library and later, on the internet. I spent afternoons desperately pursuing any information that could help my son.
Sound familiar?
When Markus was 12, I randomly searched “laryngeal cleft type 4" on my computer and an article appeared. With disbelief and great excitement, I read the first paragraph, and then shockingly realized this medical journal article, the one I had hoped would lead to some type of solution, was about my son.
I was still alone.
No one could offer, “This worked for us,” or a simple, “My kid, too.” At that moment, I came to believe it would likely always just be his dad and me, looking at each other, wondering, “What do we do now?”
In high school, Markus became seriously ill. Together, we decided to write his story, something I knew I would treasure forever. Surprisingly, someone living on the East Coast found Markus’ story while searching the internet. Someone whose son had just had a long hospital stay. Someone whose child had been born with a type 4 laryngeal cleft.
“The mom messaged us and shared her son’s story. It was the first time I had read the words of another parent raising a child born with a laryngeal cleft.”
This mom also told me about a laryngeal cleft support group on Facebook.
A what? How could I have never heard about this? I googled the group, and there it was, 1,200 members strong. I could hardly believe what I was reading. Instant connections started to form online.
In 2023, a mom from the group posted her concerns regarding her teenage son’s upcoming cleft repair. She and I began messaging each other and continued through his surgery and recovery. Our sons connected - one in the Midwest and one in the Pacific Northwest. They became friends and a third was added to their posse. These three young adults have now supported each other through several major health issues. We moms have done the same.
Over time, parents have started posting on social media more and more about their child with a laryngeal cleft. I am forever grateful to that first mom who reached out to me and shared her story. She had no idea where it would lead or if it would matter, and boy, did it matter.
Truly, connecting with her changed my life.
And sometimes, there are the unexpected, indirect connections that lead to something life-changing.
Like many families who have a child born with a laryngeal cleft, my son has seen numerous healthcare professionals. A pulmonologist who had known my son for years was recently in an operating room with a newer staff member, an ENT. She asked the new surgeon if he had ever had a patient with a laryngeal cleft. To her surprise, the ENT shared that he had trained at a hospital where he had seen a number of patients with laryngeal clefts.
Surprised, the pulmonologist asked, “Have you met Markus?”
“A short time later, through the connections of four doctors, an ENT with extensive laryngeal cleft experience called my son. He and his hospital’s aerodigestive team offered to help Markus. ”
I could hardly believe what had just happened. Had they really just extended an invitation to see Markus, then a 21-year-old college student? My son, who was coughing out blood almost daily? Prior to this phone call, Markus did not seem to have any real options left. Did we dare risk getting our hopes up?
Weeks later we traveled to a new facility, where it was discovered that a large, hidden hole was connecting Markus’ trachea and esophagus.
Astonishing how a few short words shared in an operating room led to a connection that not only changed my son’s life, but saved his life.
The truth is, we all have a story someone needs to hear.
We may never know the impact our journey has on others. For a person who is frantically searching for information or hope, your story may be the lifeline they need.
No matter how small, every connection on my son’s laryngeal cleft journey has become part of a network. A network that my family has watched grow from a small medical team, willing to attempt a surgery they had never done, to LCN’s community of families and medical professionals working together to promote awareness, early diagnosis, and effective treatment of laryngeal clefts.
For the first time in over two decades, we no longer feel alone.
LCN invites you to share your child’s journey on our website. Please email stories@laryngealcleft.org for help or more information.