When I heard about the death of Shiloh Pepin, the “Mermaid Girl” who gained celebrity status on Oprah, I felt sad to know the feisty ten year old had lost her battle to stay alive. If you missed the story, see http://www.oprah.com/article/oprahshow/20090827-tows-mermaid-girl.
I did some digging to remind myself of the details of Shiloh and her family’s unique experience. Shiloh’s condition, sirenomelia, is a rare and fascinating birth defect. The fused legs it causes remind us of the mythical ocean-dwelling creatures that lend the defect its common name. It results from insufficient blood vessels in the umbilical cord as a fetus is developing. The restricted blood flow prevents the baby’s lower extremities from forming properly. In addition to fused legs, the infant inevitably suffers from ill-formed or non-existent kidneys, bladder, intestines and reproductive organs.
Most children with sirenomelia have short lives indeed. About half are stillborn. Most of those who are born alive only survive a few days. Shiloh was one of the longest-lived children with mermaid syndrome.
Reviewing the information publicly available, what stays with me the most is Shiloh’s mother’s poignant plea to the camera to, “tell me what’s the best thing to do for her.” This was after a snippet of tape in which a doctor mused that amputation of Shiloh’s entire lower body from the waist down might be the right move. (See this video at http://www.youtube.com/watch?v=8okYhcRwrgY)
As a plastic surgery writer and mother of a daughter with the usual aesthetic concerns, this is when the wheels in my brain started to turn furiously. What do you do to figure out “the best thing to do” for your child if they’re born with a physical feature outside the norm?
For most of us moms, fortunately, the decisions we make are much less heart wrenching than those Shiloh’s parents faced. But that doesn’t mean they’re not important. When we have a child with a physical feature that may cause them unwanted attention, even cruel treatment, how we deal with it is critical to our son or daughter’s emotional health.
Of course there’s a spectrum of abnormal—outside the norm—physical features. If your child is born with a cleft palate, or crossed eyes, the decision to seek surgical correction as soon as possible is almost automatic. But there are many more conditions, most much less serious, for which the course of action isn’t as clear. What do you do if your young son’s ears stick out to the point where he is often teased? Or if your child is born with an extra thumb? What if your teenage daughter has huge breasts that have her peers agog?
These are questions for which there’s no black or white answer. Some parents are very much against cosmetic surgery and feel strongly that their child should deal with the hand Mother Nature dealt them, no matter how much emotional trauma may result. Other parents may be quick to find a “solution” in a well-intentioned effort to save their child from suffering any adversity at all.
I’ve spoken with many plastic surgeons and their patients, including children who have had an abnormality addressed in childhood. I’ve come to believe that the right course for a mom to take is to have extra sensitive radar about this issue and to be even more attuned to their child’s needs. If asked, I would suggest:
• Talk with your daughter about her large breasts (when the topic comes up naturally) and listen closely to what she has to say
• Take care to respond even-handedly to concerns your son has about his ears that stick out; don’t overreact but don’t dismiss his feelings either
• Speak with each teacher your child has and let them know you are on the lookout for problems related to your child’s physique
• Do your best to determine whether your child may suffer any long-lasting effects from the way others treat them
• Research your child’s condition; consider visiting a counselor and/or plastic surgeon for expert input
Above all, keep your ears and mind open when it comes to helping your child deal with a troublesome physical feature. For your son or daughter, surgery may be the right decision, even if it’s not what you would choose for yourself. For other kids, even children with a profound physical abnormality like Shiloh Pepin, remaining different than everyone else and accepting it is right. With patience to listen and learn, you can make good choices.