Shiloh Pepin: The Mermaid Girl
10-Year-Old Girl Born With Legs Fused Together
By Mary Beth Sammons
Shortly after her birth, Shiloh Pepin was given 72 hours to live.
Now 10-years-old, Shiloh has made beating the odds and baffling the medical community a way of life. Born with a rare birth defect called sirenomelia, also known as mermaid syndrome, she is one of less than a handful of children known in the world known to be living with this usually fatal disorder.
“Sirenomelia is a congenital birth defect in which infants are born with a single lower extremity or with their legs fused together, giving the appearance of a mermaid,” says Warren G. Sanger, Ph.D., FACMG, Professor of Pediatrics and Pathology, and Director of the Human Genetics Laboratory and Clinical Genetics, at the Munroe-Meyer Institute. There also are severe abnormalities of the bladder and kidney.
Watch a clip from Shiloh Pepin's documentary. Story continues below video.
The syndrome occurs in only one in 60,000 births, and more than half the cases result in stillbirth. It is 100 times more likely to occur in identical twins than in single births or fraternal twins, says Sanger. In addition to having her legs fused together, Shiloh was also born with no rectum, uterus, genitals or bladder and with only a fourth of a kidney.
“Very rarely do these children survive, and so 10-year-old Shiloh is an exception,” says Sanger. “The patients we have dealt with have died before birth, at birth or shortly after because of internal organ problems. “
The syndrome develops during the very early fetal development, through a diversion of the blood flow from the caudal structures [muscles, bones, cartilages, nerves and blood vessels] of the embryo to the placenta, explains Sanger. The lack of blood flow to the extremities results in the fusion of the lower limbs.
“That [Shiloh] survived at birth was incredible in itself. That she has survived every medical crisis in her path is nothing short of miraculous,” her mother, Leslie, writes on ShilohPepin.com, a site dedicated to fundraising for her extensive medical treatments.
Described by her mother as “an outspoken child who loves to be the center of attention,” Shiloh is used to being in the spotlight. Recently, she and her parents were guests on The Oprah Winfrey Show. She has also appeared in a documentary called “The Little Mermaid Girl.” In the film, Shiloh’s mother asks, “Why has my daughter survived? Has someone forgotten to tell her she is supposed to die?”
Shiloh optimistically explains her situation, saying: “Some people are the same. Some people are different. Some people are short. Some people are tall. Look, I’m not saying this all together, but some people just like the way I am.”
What’s next for Shiloh? No one seems to know for certain. But increasingly, parents of children with rare genetic disorders are finding new found hope in modern science.
“Every day I get calls from parents who are told there is no hope,” says Marcy Smith, founder and executive director of the Los Angeles-based Madisons Foundation, which represents 25 million rare childhood diseases in the U.S. She founded the organization after her daughter Madison, now 14, was born with a rare genetic. “Medical advancements are being made every day and we’re here for the parents who are told their child will die by two, or be in a wheelchair forever, or there’s no cure. They are not alone. And we’re here to say ‘please don’t ever say there is no hope that just kills a parent’s resolve to keep fighting for their child.“
SofieC1230 06:06:30 PM Nov 22 2009
u guys knw she died right? on oct. 23 she passed away look her up on wikipedia and u will see may god be with her family
brnskinaristotle 08:15:18 PM Oct 08 2009
all i know is when hop along grows up .. she is going to have a hell of a time finding a man.. or a woman (depending on her orientation) I mean look at her.. shes more manatee than ariel... I say sell her to a circus.. and cash out while you can parents.. this gravy train cant last forever...
Khanbro1027 11:05:25 PM Sep 30 2009
just because she has a disability does not mean she is the sweetest girl haha but i still feel empathy for her but during the oprah winfrey show she clearly lacked any matters or respect for an adult. She seemed a little spoiled and gave a lot of monosyllabic responses and did not even look near Oprah she seems a little undisciplined but, she has a lot to go through. I don't believe it changes the fact she was pretty rude. but hey who am i to judge?
Lndhempstead 10:49:51 AM Sep 30 2009
She is over weight due to the fact she is on a ton of meds I have followed this story for a while now and she takes tons of meds. I think we should not look at the fact that she is over weight due to its medical but the fact that she can do so much having a disability and if she can why cant the rest of us.
TroublzJSB 05:58:39 AM Sep 29 2009
Hey ya all, forget how she pees and poops and if she's overweight. It's a wonder she is alive! More power to her and hope she keeps on living for a long time. We may think her life sucks, but I'm sure her parents are glad to have her. This is coming from a mom of 3 healthy kids. Thank God!
Sammii2905 12:43:28 AM Sep 29 2009
YaYaUniverse03...are you serious? Her legs are fused together..did you ever think about the fact that she can't walk and get around like other kids her age so maybe its a little harder for her to maintain a slimmer figure..I'm pretty sure that her parents are more concerned about enjoying the time that they thought they could never have with her instead of what she looks like. She has a birth defect and is making the most of it and seems to be pretty happy, which is more than I can say for you since you sit on the computer and comment about a 10 year old's weight.
YaYaUniverse03 11:12:11 PM Sep 28 2009
This little precious girl needs to really lose weight! How on earth can she move with so much weight on her? Aren't her parents monitoring what she eats? True that this child is just a child and can mostly eat what she wants when she wants and will lose it later- BUT I don't think we can categorize her as a typical child since she doesn't get around quite well on her own. Poor thing shouldn't have to carry so much weight around!!!!
Everlastingtear4 08:13:53 PM Sep 28 2009
I'm not one of those God believers or whatever but maybe some people are put on this earth who are much stronger than others and those people are made into examples. So we read these stories and watch these videos and think to ourselves *man I don't have it so bad after all...or If this child can be so brave then so can I* Those people are here to live the hard lives and fight...to give others strength. I would much rather be a good person on the inside than be perfect outside. The good people are good because the have had it hard and know that there is always someone else out there that has it worse than them. Take the cards your dealt and screw playing a game! Make paper airplanes and fly!
shermanater182 12:40:28 PM Sep 28 2009
does anybody know how she releases excrement without the proper biological equipment?
shermanater182 12:38:54 PM Sep 28 2009
does anybody know how she pees with no genitals and no bladder and such??