Mom shares the incredible survival story of her daughter born with rare mermaid syndrome.
Mom•Logic: When did you find out something was wrong with Shiloh?
Leslie: At 15 weeks. At that point, they brought in a picture of what they thought it might be, which was sirenomelia. The only pictures they have are dead fetus pictures that are very scary and unnerving. They said if this is what she had, she wouldn't survive and I would probably have a miscarriage because they don't develop normally.
For as long as the pregnancy continued, we hoped it wasn't that because we were told she wouldn't have any kidneys and she'd die. The more she grew the less likely we thought it was what they said it was. She somehow created a quarter of a kidney, which helped her survive the birth. When she came out, she had the biggest blackest eyes and she was absolutely beautiful, then we noticed she was so fused. Her skin was so pristine, there was no separation and as different as she was, she was beautiful and bright.
She was crying, she was big (eight pounds) and the doctors told me if she did survive she wouldn't be big, and she was. We got to see her once before they helicoptered her down to a children's hospital because we couldn't feed her. They gave her a colostomy, so we could start to feed her. Two days later, I drove to the hospital to see her for the second time.
Mom•Logic: How incredible has it been to watch your daughter defy the odds?
Leslie: At first, the doctors expected her quarter of a kidney to fail. They suggested we take her home to die. The first five months was waiting for that to happen. We took her home and she kept making milestones like cooing, and she was getting stronger.
Then we met with a specialist and he said, "She's a little girl who deserves what any little girl deserves, so what are we going to do?" I told him I wanted her to survive and I wanted her to have a quality of life and if she doesn't survive, I want her to be at home with family. He was the first person who ever gave us any chance, who wasn't afraid.
At 5 months old, her kidney failed. We started dialysis from home. After a year and a half, that failed. We started another dialysis, and we continued to fight for our child and listed her for a transplant. We had her first transplant when she was 2-years old.
Mom•Logic: Talk about Shiloh's milestones.
Leslie: Her first birthday was her first milestone. Shiloh's birthday is August 4th, 1999. In August of 2000, we had a huge party. We rented ball things, go-carts, we had a clown, and our doctor and his staff came. This birthday was huge because we didn't think we'd get there. It's been like that every birthday ever since.
Mom•Logic: Describe your daughter. What kind of kid is she?
Leslie: She loves music and movies. She can memorize the movies and recite the whole scene from Charlie and the Chocolate Factory. She loves to color. She loves her family, and spending time with her cousins. She enjoys going to school, but has a little trouble with hand and eye coordination.
Shiloh is in a mainstream class in school. She's in third grade. Last year when she was really sick she missed 123 days of school. It's been hard, but it's a small school and it's a close community. She's just like one of the other kids. She's a little more demanding because she's been raised in a hospital and she's used to telling adults what to do so she has trouble with bossing other kids around and has some socialization issues, but other than that, she does really well.
Mom•Logic: By sharing Shiloh's story, what have you learned and what do you want people to know?
Leslie: I learned not to accept anything for face value. The doctors said she would die, and it turns out they didn't know anything. You spend so much time worrying about what's going to be and what you're going to have to do, that you lose out on the moment that you have every day.
We are grateful for anything we have. People should be grateful when they have healthy children, and don't sweat the small stuff because that's what it is: small stuff.
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