Mermaid syndrome is also called sirenomelia and it is an extremely rare set of birth defects, which can vary in expression. The condition gets its name from one of the defects present, which is a fusing of the legs. The unseparated nature of the legs has been compared to a mermaid in appearance, hence the name.
If mermaid syndrome only had leg fusion, it might not be so very serious, but instead, children born with this congenital disorder have a wide variety of problems with other parts of the body. Genitals may be misshapen or absent, the bladder can be missing, spinal abnormalities may be present, and the kidneys may be seriously affected. Not that many years ago, the condition would have been considered always fatal within a few hours to days after a child is born, but there have been some successful surgeries that may ultimately alter outlook on treatment for this disease.
Several now “famous” patients have undergone treatments since the early 2000s. Shiloh Pepin, born in 1999, has received kidney transplants, restructuring of her urinary tract and other interventions. Milagros Cerron, born in 2004, had a successful surgery to separate her legs, and she is able to walk. Both girls face a lifetime of medical care. Shiloh received her second kidney transplant in 2007, but the fact that both girls did not die at birth or before it, is encouraging.
The defects associated with mermaid syndrome occur about once in 100,000 births. However, with a birth rate of over four million children a year in the United States, that would suggest about 40 children a year are born with this condition, in the US alone. These statistics must be sobering, if there are only a handful of children who have thus far managed to survive. Part of the issue may be medical prejudice toward not treating kids with mermaid syndrome, and strong recommendations from doctors that they be allowed to die, but proven treatment might alter this mindset in time.
Another reason survival can be so poor in mermaid syndrome is that severity of birth defects and types of defects may vary. With less severe forms, it’s possible that children will be able to survive to treatment. Greatly severe defects may mean the condition simply isn’t survivable for some of the children born with it. Some children do not even live to birth, and so part of assessing and treating mermaid syndrome in the future may be determining the types and severity of defects that exist.