'Bella's Gift': Santorum Daughter Beats the Odds

Sen. Rick Santorum and his wife Karen discuss their new book inspired by their daughter, Bella, who has survived a rare genetic disorder.
5:12 | 02/08/15

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Transcript for 'Bella's Gift': Santorum Daughter Beats the Odds
The doctors later told us that Bella -- that Bella was incompatible with life. And to prepare to let go. They said even if she did survive, her disabilities would be so is severe that Bella would not have a life worth living. We didn't let go. Rick santorum at the gop convention in 2012 celebrating his youngest daughter, Bella. Born with a rare genetic condition called trisomy 18. A condition that takes the life of most children born with it before they first birthday. At his most raw and emotional, even santorum confessed to losing hope. I decided that the best thing I could do was to treat her differently. To not love her. Like I did. Because it wouldn't hurt as much. If I lost her. Bella beat the odds. She's 6 now and in their new book, "Bella's gift" Rick and Karen santorum share the trials and joys of that journey. An intimate and inspiring look at family's struggle and a strong little girl's remarkable survival. Rick and Karen santorum join us now. A remarkable book. A remarkable girl. Three weeks from her 7th birthday? Three months. Three months. How is she doing? Thank you, George. She's doing great. She's been just really healthy and stable. Just a real joy to our family. What's amazing about the book, how honest, open, emotional you are. Rick, we -- like I said, we met a few months back. I was amazed to hear that you hadn't even read Karen's chapters. You were each writing a chapter one by one. You hadn't read them until a couple of weeks ago. Yeah, the reason was, I wanted to write -- because I thought the great thing about this book was it gives two perspectives. Hers as a mom. As the fighter. As the person who was going to do everything. And my perspective as the dad trying to manage everything and, as you heard, I found myself trying to be a little detached and -- it was a -- That was an amazing moment in the campaign. But you bring us inside your home as you write about that moment in the book. You say you were stunned and deeply hurt by that confession. I was because it -- it was -- it could be misinterpreted. As if Rick didn't love Bella, when, in fact, he did love Bella. Because we had lost a baby years before, he was so afraid of that hurt again and having to revisit that. This becomes I guess a portrait of a marriage. You're both grounded in faith and love. But you're strong-willed people with real emotions and real differences about how to deal with this. I think moms and dads handle things differently. You look at the high percentage of divorce among parents of disabled children. And that's run one of the reasons that motivated us to write this to give people an inside look. It's not easy. It's great gift. These kids are a gift. Every life is worth it. That is so important. Robin Roberts in her book was open about the real emotions that bubbled up in her life. And it does, I think, it must help people know this is listen, we're real. This is not easy. We had our differences. We got through it. You forgive. You get through, you heal. You move on. These parents, this book was really written for parents of kids with disabilities. That's why it's so transparent. And -- and it just -- they inspire us. They're amazing. You talk to each and every one of these parents, the message is that every person matters. What did you learn about the health care system? I was struck by your portrait of, it seemed at least from your telling, some fairly callous health care providers? Go ahead. There are so many wonderful doctors and nurses out there. But there are some, I don't think it's intentional. Maybe it's because they don't understand a trisomy 18 diagnosis. Bella's message. We said she's a little girl with a big message. Her message is don't look at her as a diagnosis. Look at her and many other people like Bella, as a person. And don't write them off just because of that diagnosis. Because, lethal language can lead to lethal outcomes. You talk about how this affected your campaign and your entire family. The campaign was a family affair last time around. You're open about the discussions you had. What is the kitchen table talk like now? As you think about it again? Well, with respect to Bella. Bella is doing so much better. She's on a great routine right now. She's doing really, really well. It's frankly not as big a concern this time around as last time. But, you know, we have a lot of other factors to consider in making that decision. With respect to Bella, we feel good enough to actually go out and tell the story and put a book out there with a lot of confidence. And a lot of people will get a lot out of it. Rick and Karen, thank you very much. We'll be back with the

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