Media broadcasts stories of children with facial anomalies being "saved" from bullying via plastic surgery. Cases range from port wine stains and scars from cleft lip repairs to things even more noticeable, like a very misshapen nose. Although the surgical-repair approach seems to many like a no-brainer, medical professionals who care for children with facial anomalies see these cases as much more complicated. I asked Cassandra Aspinall, a senior social worker in the Craniofacial Center at Seattle Children's Hospital, to explain. Aspinall has worked at Seattle Children's for 27 years. Our discussion is lightly edited for clarity.
AD: If a child is being bullied over some facial anomaly, why shouldn't we see plastic surgery as the easy fix?
CA: Making decisions about surgically "fixing" someone's appearance is much more complicated than making a decision to medically manage asthma or diabetes. Some surgeries done on facial anomalies are meant to manage human interaction by changing appearance, and human interaction is always complex. When I work with these families, I try to find out what has been done to stop other people's reactions to the child's facial difference. I can't think of any situation where a person who is being singled out because of racial or ethnic differences would be told that that they should just change their race or religion to avoid someone else's prejudice.
What risks do you bring up when families are considering reconstructive surgeries?
Of course the physical risks that come with any surgery, but also the risks of changing one's appearance. A child and family may unexpectedly face stress after surgery from having "given in to the bullies," from feeling not strong enough to cope.
The trend in the pediatric care of children with socially-challenging anatomies seems to be toward team care -- social workers and psychologists as well as medical and surgical specialists.
It is. We're trying to do more to immediately support the patient, but also improve long-term outcomes. We may provide the most expert surgical treatment to a patient, but if the patient does not experience the change as positive, or if the change is short-lived because environmental issues are not addressed, then harm can ensue. The "problem being treated" has to be assessed rather than assumed. Other factors will also affect how an individual fares: how other people react, whether or not the family suffers financially from treatments. A multidisciplinary team can also work to reduce the trauma sometimes caused by medical interventions, an under-recognized concern.
When a child is born with a noticeable birth anomaly, parents often worry that that child will never be lovable. (Actually, all parents probably worry about this for all children.) What's the best way to address that worry?
The most important thing to do is to explicitly address it. The reactions of others can be a problem, but those reactions--or fears that those reactions will occur--must not be our only focus. We try to help families and young children by supporting identity formation that puts the medical condition in the background while staying focused on what a given child enjoys or finds interesting in the world, and helping others to do the same. All children can learn to be with those who support them and move away from those who do not. They can learn that one can choose to change oneself (including one's body) to satisfy the views of a few or one can align with those who share common interests and worldviews.
You were born with a cleft lip and your third child also turned out to have a cleft lip. What insight did these experiences give you?
My personal and professional experiences have reinforced for me the limits of modern medicine. My life experience has also taught me to be very careful about guarding my privacy while also being vocal about how others need to do the same. Other team members may advertise my life experiences as something I can share with patients and families as a way to provide guidance about their own evolving journey, but what they often miss is the importance of helping parents to focus on the differences in our experiences rather than trying to imagine that there is a "recipe" to make it work. I cannot confuse my life experience with any other person's, especially my own child's.
The face is particularly important to so many aspects of life. Does this mean we should be quicker to offer cosmetic plastic surgery for facial anomalies than other socially-challenging anomalies?
It is because the face is so important that we should take extra time in considering surgical treatments that change facial appearance. The risks are great. I worry that we often do not take the time to uncouple the offering of surgery from the process of making the decision to actually perform a surgery. I encourage parents to let children be part of decision-making, as much as possible. Parents often worry that delaying surgery may hurt their children or cause the parents to be seen as irresponsible. But waiting until their child can participate in a surgical decision can lead to important psychological benefits that maybe they haven't considered.
Because surgery is especially risky on newborns, surgeons do not perform primary cleft lip repair until children are several months old. That means parents have taken their babies home and gotten to know them with the cleft for months. Do they sometimes find the "repaired" face disorienting?
This is a very common -- almost universal -- reaction. The emotional work that parents go through is quite intense. Providing a clinical venue for honest conversation is critical. Parents do not want anyone to interpret their decision to move forward with a surgery to mean that they do not love and accept their children. At the same time, they are anxious about "meeting" their babies after surgery, as they are acutely aware the face will change. I talk with parents about how their brains have mapped out who their child is based on the face, and encourage them to understand their love will do the remapping necessary after surgery. But it can be hard.
What fears and hopes do children typically express about cosmetic facial surgeries?
Children worry about pain, waking up during surgery, and missing school and their friends. They worry that, by agreeing to an operation, they are giving in to the bullies or sending the message that they don't accept themselves, when really what they want is to just look a little bit less different. They want to be noticed for who they really are, not because their lip or nose is crooked or because their speech sounds different. At the same time, they have accepted who they are and for the most part accept these differences. So children facing surgery worry they may not recognize themselves afterwards.
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