Talking with your child about their cleft

Kids take their cue from us. When the people around them talk about their cleft calmly and honestly, they learn that it's simply part of their story.

The research is encouraging here. A 2016 review of 148 studies concluded that "the overall impact of CL/P on psychological adjustment appears to be low," while noting that some children do face challenges such as teasing or worries about appearance or speech.^[9] Many people born with a cleft describe "normal or particularly close relationships with family members," which the authors suggest may help protect against social challenges.^[9] In a study of 52 adults looking back on growing up with a cleft, family coping and support, peer support and having a say in treatment were among the outside factors linked to how people adjusted.^[10] In other words, the way you talk about it at home matters.

The foundations, at any age

• Be open and honest. ACPA says "parents should be open and honest with their children about their differences," and that it is important to use correct terms and be truthful about a child's condition and medical history.^[1]
• Start early and keep it everyday. An NHS cleft team leaflet encourages discussing the cleft "early and naturally in everyday life," with "clear, simple facts."^[3]
• It's okay not to know. If your child asks something you can't answer, CLAPA suggests telling them you'll try to find out.^[2]

Babies, toddlers and preschoolers

ACPA says children usually become aware of their own facial appearance and other people's around age four, though a child with a cleft may notice differences as young as two or three.^[1] So you don't need to wait for a "big talk." Small, true sentences, repeated over time, do the work.

"When you were in my tummy, your lip and the top of your mouth needed a little extra time to come together. The doctors helped."

Baby photos are a gentle way in. CLAPA says they "can be a big help," and children often enjoy seeing themselves grow and change.^[2] The NHS leaflet suggests looking back at early photos together and talking about what happened; some families make a photo book, which children sometimes like to help make, and some share it with their nursery or school.^[3]

Early school years

This is when classmates start asking. ACPA reminds parents that "kids are curious about a lot of things," and that in most cases people are not trying to be hurtful.^[4] CLAPA suggests teaching your child a simple sentence to explain their cleft, in words they feel comfortable with, especially as they start school.^[2] CLAPA's own example:

"I was born with a hole in my lip, and the doctors sewed it up when I was a baby."^[2]

ACPA suggests a simple three-part answer: acknowledge the difference, give a short explanation that tells the truth "in a comfortable way," then move on.^[4] Changing Faces uses a similar approach (Explain, Reassure, Distract) and recommends that children and parents agree on the exact words ahead of time, then rehearse them with role-play or puppets.^[5] ACPA puts it simply: "Practicing takes away the surprise."^[4]

Brandon went further: in kindergarten, with his mom's help, he wrote a whole book to explain it to his class.

When people stare or tease

Changing Faces says a brief, straightforward answer will satisfy most people, and suggests telling your child that when someone stares, they "have done nothing wrong."^[6] When your child is teased, ACPA suggests first talking with them about who said what and how they feel, then letting them choose a response, such as ignoring it, a calm "Please stop," or sharing a little information. Whatever they choose, ACPA says confidence in voice and body language matters.^[4] If teasing keeps happening, involve the teacher or school and your cleft team. ACPA notes that in the US, "federal law protects students from harassment based on a medical condition."^[4]

"Remember, you can always tell me what happened. You're never in trouble for telling."

Older kids and teens

Let them lead. Ask how they want to talk about it, and whether they want to be part of decisions about their care. ACPA's care standards say children should participate in care decisions "when the child is mature enough to do so," that young people should be included in care planning, and that as they grow they should be given information about their own health condition in language they understand.^[8] ACPA tells teens directly that "sharing in the decision-making about your care can increase your feelings of confidence about your decisions," and that the teenage years are a good time to grow their independence with health decisions.^[7]

Some teens want to talk a lot; some want space. Both are normal. If your teen feels sad, angry, overwhelmed or confused about their experiences, ACPA suggests the cleft team's social worker or psychologist as a starting point, and they may recommend a peer support group or family counseling.^[11]

Words that help

• Use the real words: "cleft lip and palate."^[1]
• Talk about difference as normal: "Everyone has something that makes them different."
• Avoid "fixing" language about who they are. Doctors repair the lip and palate; your child was never broken.
• Praise courage, not looks. CLAPA suggests praising your child's bravery around appointments and treatment.^[2]
• Let them own their story. The words they choose to use are the right words.

If you're not sure where to start, ask your cleft team. ACPA says psychological and social support professionals should ideally be part of the cleft team, and they can help families with exactly these conversations.^[8]