Tamara Mantlo - Summer 2008

When I awoke April 17, 2008, it was like a dream had come true. That’s because I never thought I’d live to see my 40th birthday. When I was three, doctors told my parents I may not live to be 10. But here I am, defying the odds.

I was born with Carpenter’s syndrome and a congenital heart defect. I had an open-heart surgery at age three to fix a ventricular septal defect, a hole in my heart. After that surgery, the list goes on with removing extra fingers and toes from both hands and feet and separating fingers on my hands. (The first three toes on both feet are still webbed.)

I’ve had tubes in my ears a few times and eye surgery. Luckily, I didn’t have to have any cranial surgeries. The only type of head surgery I’ve had dealt with a chiari malformation, and that was performed when I was an adult.

I also had reconstructive knee surgery with the chance of never walking again. (Well, that didn’t happen.) I am also fighting a constant battle with obesity.

In 1993, one of the best and scariest things in my life happened to me — I became pregnant. I remember praying every day for nine months, “Please let my child be healthy.” On March 20th, 1994, my beautiful, healthy daughter, Sarah, was born.Now she’s a healthy teenager, which is a little difficult for me because I’m not used to all the things healthy teenagers do. I have tried my best to raise her to accept people for who they are and to see beyond outside differences.

My first CCA retreat was supposed to be in Hershey, but the Monday before we were supposed to leave my heart went into ventricular tachycardia. I was in the hospital for three weeks and had my pulmonary valve replaced with a porcine (pig) tissue valve and a defibulator. I had my heart shocked three times and almost died. And I was upset because I couldn’t go to Hershey to have chocolate.

The next summer, Sarah and I drove to Salt Lake City for the CCA retreat, where I finally got to meet all the awesome people I’d been talking to over the last few years on the Apert Listserve.

This was the best experience in my life — I actually felt “normal.” All my life I was always the different one, but oh no not here. I was just like everyone else. I stayed up all hours hanging out with new friends. I talked sports with kids in the pool. I was finally able to just be myself around people who actually could say “I know how you feel” — and really mean they know how you feel. Sarah wanted to bring a few of the little kids home with her. (Somehow I didn’t think their moms would’ve liked that.)

For now, I’m getting my bachelor’s degree online. I would then like to get my teaching certificate to teach special education because I feel I have a lot to offer.

I’d also like to establish a nonprofit organization to honor my sister, Wendy, who died when she was just an hour old from complications of Carpenter’s syndrome. Until then, I’ll keep advocating for people with differences and congenital heart defects.

So, yes, here I am, all 40 years of me, still defying the odds. But I wouldn’t have been able to live this dream without the love, strength and support of my parents. They would probably tell you I’m one stubborn woman. I’d say, “Thank you, yes I am.”

If you would like to share your story with CCA, please send an email to Annie Reeves at areeves@ccakids.com. If your story is chosen, with your permission, we will edit and publish it in the CCA newsletter, on the Web site or use it for public awareness programs. Not all stories will be selected.

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