A Good Question is a series of posts inspired by common questions from patients and families.
Although there are no specialty pacifiers for babies affected by cleft lip and palate, a bit of education and a lot of improvisation may help parents satisfy baby’s intense need to suck.
Successful sucking relies on the creation of a vacuum, an impossible accomplishment for a baby with a cleft. Have you ever tried to use a drinking straw that didn’t work? Only to discover that it had a hole in its side? That’s very similar to what happens when a baby with a cleft tries to suck: She’s always pulling air through with her suck making it impossible for her to create the vacuum-suction needed to hold the pacifier in her mouth.
For the youngest babies who seem to enjoy a pacifier, many parents and caregivers simply settle in for the duration, gently supporting the pacifier in baby’s mouth so baby may enjoy the satisfaction of sucking without depending on true suction to keep the pacifier in place. Many parents tell us they have the best luck with the softest, silicone-based pacifiers they can find. The pacifier’s size and shape are other considerations and may vary depending on size and location of the cleft in the palate.
For older infants, perhaps six-plus months, who may have the motor-skill development to support their own pacifier, something like the WubbaNub* might be a good alternative.
*CPF does not endorse or recommend any particular product or brand.
What pacifier advice do you have to share?
“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?
Even before they’ve met your child, family members, friends, and strangers are likely to have questions about the cleft–just as you did when you first learned about it. While questions may have their origins in fear, worry, confusion or any other of many emotions, parents tell us that it’s most helpful to treat the majority of questions as if they are simply a matter of natural curiosity. That’s a tough one, isn’t it? When the question starts with, “What’s wrong with . . .” or, “Was it something you did . . .?” it can be hard to generously assume the best of folks, but there are some really good reasons to do just that:
1) You, the parent, get to model positive language and attitude for your child. Language and attitude that not only answer the question in that moment, but language and attitude that will help your child answer similar questions with confidence and poise as he or she grows up.
2) Be an ambassador for patients and families affected by clefts and craniofacial birth defect. Did you ask for this job? No. Is it yours anyway? Yes. So here you are, responding to questions, comments, or an unfriendly gaze that may seem rude, judgmental, or even mean. When you help others learn about clefts, you help put them at ease and in so doing, help create an environment that is more supportive and genuinely interested in your child’s well-being and success.
3) Take away the stigma of a birth defect. For some, a birth defect is an unmentionable. Others may believe that talking about the cleft is embarrassing or causes more pain. As your own comfort and skill with talking about cleft grows, your ease with the subject will become contagious for family, friends, and most perhaps importantly, your child.
4) Boundaries are important. What happens when you’ve mustered all the good will, generosity, and patience possible? What happens if a loved one or a stranger persists with language or attitude that is rude, judgmental, or mean? No one–not a grocery clerk, not another parent at the park, not a grandparent–has the right to treat you or your child with disrespect. You and your child should always have the option to say a polite “goodbye” or “see you later” and move on.
Why do you choose to talk or not talk with others about your baby’s cleft?
Strangers and Friends: Part II–Responding to common questions about baby’s cleft.
There’s a story we get to hear a lot here at CPF. It goes something like this:
When we found out that our baby had a cleft, the cleft was all we thought about.
One moment, you’re dreaming about life with your new baby; the next, you’re learning all you can about clefts, cleft care, and what it all means for your family.
We were scared, we were worried, but pretty soon, we got the hang of feeding and there was her first smile and at some point, we stopped even seeing the cleft.
The thing that once was the most important, most consuming, most worrisome, somehow, becomes invisible.
In fact, after her lip repair, we hardly recognized her! Our baby’s face, the one we fell in love with, was now different! But there she was, our baby, with her brown eyes, a big smile, and a repaired cleft lip.
All parents get to know their children one day at a time. They learn baby’s favorite toys and happiest snuggle positions. As months come and go, parents learn favorite first foods, music, and picture books. Over time, parents discover the countless qualities that combine to make their baby the unique, one-of-kind person he or she is.
Now, we all look at her newborn pictures, before her lip was repaired, and tell her stories about the boo-boo she had when she was born and how doctors helped make it better. Her cleft will always be a part of her, but it gets a little smaller every day.
Tell us your story: How did you feel when you learned your baby had a cleft? How did you feel after repair? What was/is the hardest part for you? What’s most helpful?
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 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.
Stephanie 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 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!
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 →