In 24 seasons of taping, Oprah has interviewed A-list celebrities, world-class athletes, even Nobel Peace Prize winners. But her favorite guests aren't necessarily famous. "They're just ordinary people who have done extraordinary things with their lives through their own tenacity and determination," Oprah says. Shiloh Pepin, a little girl with a big story, is a young dynamo doing just that.
Shiloh was born with a rare condition called sirenomelia, or Mermaid Syndrome. "[The condition is] two legs that are stuck together to make one whole leg," Shiloh says. "It's the way I was made when I was born."
Sirenomelia affects one in 70,000 pregnancies, and babies born with the condition almost never survive. When Shiloh was born, the doctors told her parents she wouldn't live for more than 72 hours. Ten years later, Shiloh is one of only six people in the world living with Mermaid Syndrome.
Shiloh's health is a constant concern for her family. She takes a complex cocktail of drugs twice a day, including oral steroids and antibiotics to ward off lung infections. Shiloh has only one ovary and a portion of a kidney, and she has no rectum, bladder or vagina. Since she can't go to the bathroom, Shiloh has two bags—one for urine and one for feces—by her side every day. Her mother specially alters all her clothes accomodate these special needs.
Shiloh's parents, Leslie and Elmer, say she's adjusted well to her special lifestyle. Shiloh used to ask why she couldn't be like other kids, but Elmer says he explained to her that everyone is different. "It's our differences that make up the world and make it so special," he says. "I just assured her that God made her differently, and everybody's special in their own way."
Though her life has consistently defied doctors' expectations, Shiloh just hit a big milestone: her 10th birthday. "We're hoping to get many, many more," Leslie says. "Every day is special. But I think now that she's older, we don't spend as much time worrying about the next day. We might look a couple of months out."
Despite her limitations, Shiloh is planning for the future just like any other 5th grader. "I feel like everything's possible," she says. "I want to have a normal future like everybody else. ... It's hard to decide what I want to be when I grow up. There are so many choices. An actress, or a princess. Anything I want to be." Today, Shiloh says when she grows up she wants to be a jeweler.
Now that Shiloh has adjusted to her unique physical needs, her parents say they want to start working on her social needs. "My daughter is wonderful, but she's a bit bossy," Leslie says. "She has to be a very good advocate for herself in a wheelchair, so she's used to asking people to help her out. [Now we're going to work] on her manners and making sure she does it politely and that she's not going: ''Hey, you! Get out of my way.'"
Shiloh's spent five years in a normal school system, but Leslie says they have to start worrying about name-calling and bullying as she enters 5th grade. "Being in a wheelchair is an isolating experience, and we're trying to get her to interact and have other kids participate with her despite her differences. It takes a lot of work."
Along with the everyday challenges of school and socializing, Shiloh has another big change on the horizon: Her parents were recently separated and will soon be getting a divorce. "We've agreed to remain friends and that Shiloh is the most important thing," Elmer says. "We promised her that she would always have us."
Shiloh says her parents have taught her the true meaning of family. "Family means nobody gets left behind or forgotten," she says. The Pepin family even has a special motto that helps them through hard times, regardless of whether they are physical or emotional. "Be brave, breathe and just get through it," Shiloh says.
Of the six people in the world living with Mermaid Syndrome, four have had their legs separated. Dr. Matt Hand, a kidney specialist who has treated Shiloh since she was a baby, says a unique set of medical circumstances prevented Shiloh from having that operation. "She has a nest of blood vessels that would make cutting through them much more difficult to do without losing the extremities themselves," he says. "But more importantly, Shiloh was very sick. She went onto dialysis, which is to replace her kidney function, when she was about 3 years of age. Given that, going through the extensive surgery for separation wouldn't have worked."
If Shiloh had the surgery today, Dr. Hand says it would be purely cosmetic. "Because of the fusion of those legs, to try to get them to open and be functional, it would be very unlikely that we would be able to have her walk," he says. "We've been down this road a million times in terms of what we could potentially do for [Shiloh], but even with prosthetics it would be extremely hard to do, and it would take us about two years' worth of surgery to get there."
Dr. Hand says the surgery would also create concerns regarding possible kidney failure. "[Shiloh's] the only girl with Mermaid Syndrome who has ever had a kidney transplant," he says. The kidney complications that could arise during surgery make it too difficult an option to pursue.
At 10 years old, Shiloh is approaching puberty, which presents a new set of medical questions. "We're worried about how things are going to evolve as puberty goes along," Dr. Hand says. "We expect it to be okay because she has the ovary, but with all the hormonal changes, we're going to have to see how that goes." Shiloh won't be able to give birth, but her ovary will produce eggs, and she could have a surrogate carry a child for her.
For now, Shiloh and her parents are focusing on Shiloh's bright future. Leslie says her dream for Shiloh is simple—for her to grow up. "Every day we have is a gift, and to see her graduate high school, maybe college..."
Elmer says all he wants is for his daughter to be happy. "[My dream for Shiloh is] to have her heart's desire and to just succeed at whatever she wants to do and to have the drive and the will and the spirit to achieve it," he says. "I believe she's here to just pay testimony that the human spirit is incredible and you can achieve your dreams as long as you have the will and the drive and the spirit. And she definitely has that, no doubt about it."