Riley’s Story

agiannattasioACPA Family Services, Community Stories

Our third child, Riley, was born in 2016 with a cleft lip and palate. This was discovered at his 20-week ultrasound, and we spent the next four months leading up to his birth researching and preparing. All of the unknowns made it a very unsettling time for us. What would feeding be like? What would surgeries be like? What would the long-term impact be? As we entered uncharted territory, cleftline.org (ACPA’s website) was a great resource and provided us with reliable information and reassurance as we confronted the new challenges.

Riley went on to have his lip repair at three months old and his palate repair at nine months old. These took place through the Cleft Palate Clinic at Boys Town National Research Hospital in Omaha, Nebraska. He has had excellent, top-notch care all along, and coming from central Nebraska, we especially appreciate the convenience of seeing his entire team of specialists at one time when we make our annual trek to the clinic.

Now that Riley is a personable, energetic, jovial, stubborn, hilarious three-year-old, I can confidently echo what many people told me would be the case someday: you can hardly tell he had a cleft now by looking at him. More significantly, though, I believe his cleft has left a “mark” on his personality. Having to confront these challenges early on has made him adaptable and has made him a fighter. (His brothers would agree with that second one!)

It’s also impacted me as a parent. I was tremendously encouraged by a fellow cleft parent who saw Riley, noticed the cleft, and paused to show us pictures of his own cleft cutie, her surgeries long in the past. Riley was only three months old at the time, and we had such a long, unfamiliar medical road ahead of us: two surgeries, feeding challenges, big scary question marks for the future for speech and dental work and who knew what else. His brief encouragement said to us: “This is something that you get through, that becomes a memory, part of who your kid is. This is something that will be in the past, someday.” I hope that I can offer the same encouragement now to any other parents facing the uncertainty of a cleft diagnosis. Despite the challenges, it’s a rich and memorable season that becomes part of your child’s character and personality—and yours as a parent, too.

(Now that we’re through the baby years, I’m documenting how it all went for us: surgeries, recoveries, feeding, speech, and more, at www.smileswithscars.wordpress.com – while each child and each case is unique, it can be helpful to get a glimpse of what it can look like, and I hope to encourage other parents with our stories.)