ACPA Family Services



Strangers and Friends Alike: Part II–Responding to Common Questions about Baby’s Cleft

“I fell off a mountain!”

“I don’t know.”

“My sister hit me!”

“Nothing’s wrong with my lip.”

“It was sword fight with a lion!”

“I was born with a cleft lip and after the doctors fixed it, I still have this scar.”

We get to hear lots of stories about the creative, inventive ways kids respond to the questions about their clefts. How does a child respond to a tough question? Age, personality, audience, experience are all powerful factors. The most influential factor, though, may be the storehouse-of-responses kids collect from their parents throughout their lives–beginning long before they could answer the questions themselves. That collection is an important resource for information, confidence and a communication style that has the potential to strengthen and prepare a child for positive experiences with others and their questions for many years to come.

No perfect answers. After a prenatal diagnosis of cleft, when parents first experiment with telling close friends and family they are expecting a baby with a facial birth defect, the very first question is often, “What caused it?” Sometimes, there’s a known genetic component–an uncle or grandparent also had a cleft and so the answer might be, “well, clefts tend to run in families,”–but far more often, the answer is, “We don’t know.” For parents, family and friends alike, “we don’t know” isn’t the perfect answer we’d like it to be but still, it’s the answer we’ve got.

Prepare and practice. What about baby’s first adventures to the grocery store or walks around the neighborhood? The first question from a stranger may be, “What’s wrong with her?” or, “What’s wrong with her mouth?” Prepare and practice your response before you need it. Some of us are gifted with easy-going calm no matter the situation; others of us, well, we may find ourselves speechless, or worse, defensive and angry when those first questions come our way. “She was born with a cleft lip; our doctors will repair it when she’s a little older,” is a simple, stick-to-the-facts response and often, a sufficiently satisfying one.

Remember your audience.  The question may come from a family member, a friend or a stranger but the most important audience member? That’s your child! From the first day of life, from the very first question, remember that your child hears, records, and will reference for the rest of his or her life what you say, how you say it, your tone, mood, and expectations. (No pressure!) Ten years from now, twenty years from now, will your responses to questions about the cleft be ones you’ll be proud to hear coming directly from your child?

Kid talk.  As early as possible, encourage your child to engage with those questions himself. This is another tough parenting mission, but one with a huge payoff. Encourage your toddler to, “Tell Mrs. Smith about your lip, what do we call it?” Your two-year old may be able to say, “Cleft lip boo-boo,” or whatever other language you and your family use to describe the cleft. You can jump in from there, helping Mrs. Smith with her question, but the most important mission is accomplished: You’ve helped your child begin her own practice of answering difficult questions. She’ll be a pro, sharing details about surgery and other care, in no time!

Meet-and-greet natural curiosity with natural parent-pride. Humans are curious, it’s our nature. We see something new and we want to understand it. The grocery clerk at the checkout counter, the preschooler at the table near yours at the restaurant, the senior citizen who sits on the pew in front of you at church: They’re all curious and they’ll all have questions about your child’s cleft. Ideally, they’ll ask those questions in the gentlest, kindest, most genuinely curious of ways. Ideally, your response will reflect your mom-and-dad pride in your child. Be patient with curiosity, be generous with your pride; your child will benefit from all!

What are your experiences with questions about your child’s cleft?

On the Other End of the Line

You’ll meet many new folks here at Cleft Connection including a few regulars that you’ll see again and again. Take a few moments to meet those on the other end of the line:

Emily Kiser_colorEmily Kiser has been the Foundation Administrator at CPF since March 2011. If you’ve ordered a CPF teddy bear, applied for a CPF college scholarship, or ordered CPF booklets, Emily may have helped you. A Spanish-speaker, she is the first-contact person for our Spanish-speaking patients and families.

SW1Stephanie Williamson joined CPF staff as Director of Family Services in the summer of 2013. From direct service to research to education, Stephanie’s professional experience has woven through many facets of individual and family support. Whether you’ve got a question about a treatment team, feeding support, care as an adult, or any other craniofacial care issue, Stephanie’s mission is to connect you with the information and resources you need.

Lisa mugLisa Gist Walker has been part of the CPF community since 2006 and is former Director of Family Services. Since 2010 she’s managed special projects and events for CPF including publications and staff development. Lisa’s work with children and families stretches across more than 25 years and includes community mental health services and other non-profit settings.

         That’s us, the regulars you’ll see here at Cleft Connection.                 We can’t wait to meet you, too!

Welcome to CPF’s new blog, Cleft Connection!

Hello, and welcome to the Cleft Palate Foundation (CPF) and its new blog, Cleft Connection! Whether you’re meeting us for the first time or have known us for years, we at CPF have one guiding goal for our relationship with you: To help support and inform you as you make your way through the world of craniofacial care. Since 1973, we’ve supported patients and families through Cleftline, family conferences, and an ever-growing collection of educational materials. We are most excited about this new experience: engaging in conversation with you via Cleft Connection. Continue reading →