As a medical social worker, Cassandra L. Aspinall, MSW, discusses face-altering procedures with children and their parents to make sure their expectations are realistic.“It’s fine if someone thinks,‘I will be more positive about myself if my nose looks better,’” says Aspinall.“But there’s nothing worse than a child thinking an operation is all that’s needed to improve the chances of having a boyfriend or girlfriend or to be accepted by the popular kids for the first time.”

Aspinall provides psychological and social support for families at the Children’s Hospital and Regional Medical Center in Seattle,Washington.Working with the treatment team in the Craniofacial Center, she helps patients and their parents to better understand medical conditions and weigh the benefits and risks of treatment. Both she and her 14-year-old son were born with clefts, so she has first-hand experience in addition to her professional training.

Her role is to have in-depth conversations with patients and their families about their expectations, fears,and hopes for the future.“My responsibility is to introduce the idea of patient involvement,” says Aspinall.“I ask children if what the doctor said made sense to them, if it was scary, if they have any questions. That allows them to understand that it’s their body. Younger children, especially, don’t want to be in charge and make all the decisions, but they do want the opportunity to participate along the way.”

The Family

Acting as a translator of sorts, she makes sure the family understands their child’s diagnosis and treatment options by encouraging questions, even those they may think sound silly. And, in turn, she helps the craniofacial team understand the family’s concerns and priorities. Each family, she says, has its own set of values that must be taken into account.

An advocate of family-centered care, she believes that parents have a right to protect their child and make decisions they believe are in the child’s best interest. However, in some cases, children think that their appearance is fine, but their parents, doctors,and others imply that the way they look is a problem that has to be fixed.This can create a conflict that should be explored.

Some parents start the dialogue by dealing with their initial reactions to their child. “I encourage them to admit that when they first saw their child or learned of their child’s diagnosis they were upset,”Aspinall says.“Even for me,after having been born with a cleft lip and working with so many people with children with facial differences over the years, seeing my own child in delivery took some adjustment.That doesn’t mean I don’t love him and accept him. It means I’m a human being.”

The Community

As children head off to school, they have more social encounters and more chances to connect with others through sports, clubs, music, and social events.

“Identity development becomes more complex during this time, as children enter more formalized educational and recreational settings,” says Aspinall. “All children, including children with facial conditions, must cope with how they are perceived.”

Juggling treatments, seeking additional assessments, and evaluating elective procedures can further complicate the school year. Psychological rather than physical issues may drive changes to appearance, and both need to be considered in deciding the best course of action. Parents may be nervous when sending their child to school.“When your child is born with a medical condition you have over-activated radar—you’re on the alert for things that others don’t have to worry about, and you want to protect, protect, protect. But over time, backing off may allow your child that magical moment when he or she meets somebody who’s supportive and welcoming, and has such a great time.”

Society

In addition to the local community, society at large may influence a decision about whether or not to undergo a craniofacial procedure. (While some procedures like opening an airway are obviously not optional, others are.) Having cleft lip revision surgery, for example, may help the child and family feel more comfortable and accepted in society.

“Although parents love their children even before any operation,” says Aspinall, “they worry about issues of inclusion and acceptance. The decision to have surgery is bittersweet, because if the world were a perfect place, we would all tolerate each other regardless of how we look.”

Making modifications chiefly for the sake of appearance, particularly in children too young to give informed consent, is a matter of debate in medical circles. Many plastic surgeons argue that altering facial features is necessary to reduce possible stigma, while some medical ethicists counter that exposing a human to avoidable risk is unacceptable.

Aspinall encourages parents—and surgeons—not to automatically perform secondary revisions before a child enters kindergarten.The timing of such procedures and their impact on the child needs to be discussed. In addition to providing a benefit, they can also pose risks, such as problems with anesthesia, infection, and unsatisfactory outcome. Other drawbacks to consider include missing school, extracurricular activities, and contact sports.

She reminds parents that improving their child’s appearance is not like other ways of improving a child’s life, such as going to soccer camp or signing up for French lessons.That is not to say that the physical risk isn’t worth taking, but considering this reality is important.

Ultimately, the risk belongs to the child, and, therefore, she believes children should be informed as much as possible and involved in decision-making in a developmentally appropriate way that also takes into consideration the values of the family.As patients change and develop, she urges them to examine the relationship between who they are and what they look like, and to carefully evaluate any alteration of their appearance.

Dealing with Feelings

How people look can strongly affect how they feel about themselves. Both boys and girls with facial differences may experience low self-esteem, anxiety, and depression but express it in different ways. Counseling may be needed to clarify the motivation for surgery and perceived benefit.

Aspinall fully endorses opting for reconstructive surgery if people believe it will help others to perceive them as they truly are. “I always tell insurance companies that the reality is that we’re not taking normal structures and making them more perfect,” she says.“We are taking abnormal structures and making them more normal.”

Her goal is not to dictate what other people should do but to discuss feelings and values. She constantly reminds children and their families to talk together about the bumps in the road.“They come up for everybody,” she says.“And the reality is your child will have a lot of strengths and a lot of interests.You’ll be proud of her and mad at her like any other child.The key is to remind ourselves that we can make it through life’s challenges, both planned and unplanned.”