What Goes Around Comes Around – a Former Cleft Patient’s Journey in Ecuador

By Parke Kallenberg

Around 80 children with various cleft lip/palate issues waited with their families to see the Alliance For Smiles team in Ecuador.   The families had travelled by bike, bus, canoe, whatever it took.   They had waited days – and some for years.   They were afraid and hopeful.   These were the emotions and expressions that greeted us.    That moment hit me to the core of my soul… deeper than I can ever explain.  No, I was not one of the medical experts on the AFS team.   I went as the Family Coordinator – a non-medical support person.  But in that moment, I was each of those kids.  I was born with a severe cleft lip and palate defect.   I had multiple surgeries over 17 years to repair my cleft issues.  In each of their eyes, their tears, their anxiety…. I saw myself 60+ years ago.

As the family coordinator I helped communicate with parents, transfer patients from the patient ward, to the OR, to recovery, and back to the patient ward.  Each step of the journey was laced with parents handing off and receiving their children.   Each step held its own anxiety and triumphs.   Before, the only perspective I had experienced was from the surgical table looking up at bright lights and people with masks.   Now, the experience was witnessing the parents, the medical personnel, the complexity of systems and emotions that everyone would navigate in their own way.

In the next 5 days over 40 children had procedures.  The surgeons, nurses, hospital personnel, and AFS team were amazing.    Visiting the patient ward each day and seeing families reunited, kids recovering and smiling was beyond description.    Everyone on the team had their own bag of tricks.  My wife had the role of record keeper and would get short windows of time to visit the pediatric ward.   Watching her help patients make bracelets, necklaces, color….. helping children smile and laugh was very rewarding. One of the surgeons brought wrestling masks and would take any free time to entertain the children.  The other surgeon took extra time in each surgery to teach medical students and new doctors the procedures.


The nurses and support staff gave endlessly to the families and the patients in ways that touched the heart.   Little red sponge balls were part of my “bag of tricks”.  Teaching the kids how to make them disappear, reappear, and multiply was one of my favorite past times with the kids.  It seemed to be one of their favorites too.   Later in the week I spotted little red balls here and there around the hospital, making me smile and reminding me that we all leave a little of ourselves everywhere we go.   These children and families that have so little cherished everything.   A lesson to all of us.

Growing up with cleft I knew the struggles, both physical and emotional, these kids and families face.   The strength and resilience demonstrated by these kids was more than encouraging – it was healing.  Neither my wife nor I are fluent in Spanish, but the hugs and smiles from the parents and patients spoke volumes, it spoke to our souls.     The dedication of the AFS team and the support team in Ecuador was inspirational.

I went with Alliance For Smiles believing I would give what I could… an example of cleft repair and a good life.   Overwhelmingly, I received so much more than I gave.    The laughter of children.  The skills and generosity of the Alliance For Smiles team.   The preparation and support of the team in Ecuador.    The hope and gratitude of parents.   A deepening admiration for my wife and her gifts.   A glimpse into what my family experienced when I was the patient and who I was in those early years.

Each of us has our own story.  The experience in Ecuador certainly helped me add depth to some chapters in my life…. But that story is not complete and I feel a need to go again.  Come with us.   A trip with AFS could add a few pages to anyone’s story.  It will touch your heart.  You know what they say….  what goes around comes around!