Wendy’s Water Cooler Chat

ACPAACPA News, Water Cooler Chat

Wendy-Jo Toyama, MBA, CAE headshot

Wendy-Jo Toyama, MBA, CAE

Last week, something extraordinary happened at 1504 East Franklin — something that was a new experience for me. A mother, who is expecting a child with cleft lip, came by our offices with her mother and children. She recently moved to the US, leaving behind a difficult family situation. Her mother had called the Cleftline a few months ago. It was a very tough conversation. Chris Bouton, the administrative assistant who has assists with Cleftline, took that call. Chris was moved by the opportunity to meet her and relieved to see that she and her daughter’s family were doing well. While we shared that we are not medical professionals and could not provide medical advice, Chris and I met with them.

We listened. She is concerned about how to feed her baby and which bottle to use. She is concerned about insurance coverage. She is concerned about how to afford the travel and lodging costs associated with care. She wanted to see and hold a baby with an unrepaired cleft. She is scared.

Though I know that for our family services team and for each of you, this is not unique. For me it was. It was powerful and reinforced why we love being in service to support you and families who are uncertain and afraid.

We encouraged her to identify an ACPA Approved Team to provide care and described the standards that ACPA Approved Teams maintain. We showed her a selection of bottles and shared that her baby may actually “select” the bottle that works, and her team will work with her. We provided her with information packets on insurance coverage and other resources that could help with unanticipated expenses. We gave Cleftline™ Bears to her children. We shared stories of the high school graduates affected by cleft lip and palate that receive scholarships and are thriving. We reassured her that her team will answer questions and take good care of her and her child. But more than anything, we listened.

I saw the ultrasound and a smiling face where the cleft was clearly visible, a first for me. I know that we provide important support for families, and this family’s visit brought the work we all engage in to life in a much more personal way.  And, we hope in some small way — we helped her begin her journey with a little less angst than when she arrived at our door.