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.