Growing Up Together

All sibling relationships have their ups and downs and tend to be a blend of loyalty and rivalry. “Families in which a child has a craniofacial difference are more alike than different from other families,” says Elisa Bronfman, PhD, a staff psychologist in the Medical Coping Clinic at Children’s Hospital Boston.

But positive and negative emotions may be more pronounced for siblings of children with craniofacial conditions. Along with feelings of love, support, and protectiveness, they may be jealous of attention that their brother or sister receives or embarrassed to be seen with them in public.

Different factors influence the impact a child’s facial difference has, including its severity, the number of procedures required to correct it, and the age at which those procedures occur. The sibling’s age and developmental level also have an effect on the relationship.

“Any medical problem that requires parental time and attention affects everyone in the family, ” says Bronfman. “For example, a sibling may have to stay with relatives when his brother or sister has a procedure, which can be stressful. ”

Rewards and Difficulties

Most siblings have positive childhood experiences and tend to be strengthened by their relationship with a brother or sister born with a facial difference. They frequently grow to be more mature, compassionate, and empathetic than their peers.

“Often siblings of a child with any special need are more sensitive and sympathetic to others, ” says Bronfman. “They know the adversity that goes with surgery. After the ordeal, they may come out on the other side having a more thoughtful approach to life in general. ”

On the downside, reactions of others to a facial difference, such as staring, pointing, or teasing can cause the sibling emotional distress. “Some children are embarrassed by their brother’s or sister’s craniofacial difference and want to distance themselves from it, ” says Bronfman. “They see kids staring and want to avoid that.”  They may even want to hide their brother or sister from their friends and hesitate to invite other children home. They may also want to exclude him or her from play activities.

In a small community, where everyone knows everyone else, there is often less gawking and teasing, Bronfman points out. “In a larger town or city, every new person they encounter has to figure it out, ” she says. “Kids talk and stare—not so much to be mean, but wondering, ‘What is that?’”

The amount of parental attention that the child with the craniofacial condition receives may also be a source of friction. Siblings, especially younger ones, may feel shortchanged when it comes to time spent with their parents. And they may be envious of the cards and gifts that their brother or sister receives after surgical procedures.

Supporting Siblings

How well parents cope with the stress of a child who needs special care affects how well the siblings cope. Siblings do best when their parents talk openly and express their feelings.

“Difficulties are diminished if the parents are thoughtful and help both children to feel loved,” says Bronfman. Spending special time with siblings—going to the movies or playing a game or sport together—can help them feel they’re receiving attention, too.

Sharing information with siblings and helping them to understand what’s going on can alleviate anxieties. As an old song by Mr. Rogers says,“I like to be told…It helps me get ready for all those things.”And by being “in the know,” siblings are able to explain their brother’s or sister’s craniofacial condition to their friends or classmates. When a procedure is scheduled, Bronfman recommends the following to parents:

  • Discuss with siblings what will happen after the procedure.Talk about adjusting to their brother or sister’s new appearance.
  • Be thoughtful about when siblings can visit.
  • Make sure visitors don’t pay attention only to the child who’s had the surgery. (As when a new baby is born, it’s nice to bring a present or card for the sibling, too.)

Role playing can also be helpful in teaching siblings how to deal with curious looks and inquiries from others. Parents can help children rehearse possible responses to questions about their brother or sister’s appearance. Often best are simple, straightforward answers such as,“He was born that way.”