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.