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Mermaid syndrome, or sirenomelia, is a rare birth defect where the legs are fused together, often with other severe defects such as missing genitalia, bladder, spinal abnormalities, and kidney problems. Successful surgeries have been performed, but survival rates are still low. Around 40 babies a year are born with this condition in the US alone.
Mermaid syndrome is also called sirenomelia and 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 fusion of the legs. The unseparated nature of the legs has been likened to the appearance of a mermaid, hence the name.
If Mermaid Syndrome only had leg fusion, it might not be as serious, but instead, babies born with this congenital disorder have a wide variety of problems with other parts of the body. The genitalia may be deformed or absent, the bladder may be missing, spinal abnormalities may be present, and the kidneys may be severely affected. Not too many years ago, the condition would have always been considered fatal within hours or days after the birth of a child, but there have been some successful surgeries that could ultimately alter the outlook on the treatment of 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 surgeries. Milagros Cerron, born in 2004, had successful surgery to separate her legs and is able to walk. Both girls face a lifetime of medical treatment. Shiloh received her second kidney transplant in 2007, but the fact that both girls didn’t die at birth or before her is encouraging.
Defects associated with mermaid syndrome occur about once in 100,000 births. However, with a birth rate of over four million babies a year in the US, this would suggest that around 40 babies a year are born with the condition, in the US alone. These statistics are sobering if there are only a handful of children who have managed to survive so far. Part of the problem may be medical bias against not treating children with Mermaid Syndrome and doctors’ strong recommendations about being allowed to die, but proven treatment could alter that mindset over time.
Another reason survival can be so poor in mermaid syndrome is that the severity of birth defects and the types of defects can vary. With less severe forms, children may be able to survive treatment. Very serious defects can mean that the condition simply didn’t survive for some of the children born with it. Some babies don’t even live to be born, so part of evaluating and treating mermaid syndrome in the future may be to determine the types and severity of existing defects.
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