When hit songwriter and former American Idol judge Kara DioGuardi and husband Mike McCuddy welcomed son Greyson James Carroll via gestational surrogate in January, it was a dream come true for the couple following five years of heartbreaking fertility issues.
But that’s only part of her story.
Two years ago, the music publisher learned she was a carrier for the BRCA2 gene mutation, which is linked to hereditary breast and ovarian cancer.
Then last December, after consulting with her doctor and “mentally preparing myself for the worst-case scenario,” explains DioGuardi, she underwent surgery to remove her uterus, ovaries and fallopian tubes — a move medical experts say greatly reduces her chances of developing these cancers in the future.
Now, in hopes of educating others, DioGuardi, 42, is opening up exclusively to PEOPLE about her BRCA2 diagnosis, why she chose surgery — and life as a mom to 3-month-old Greyson.
Stephen J. Finfer
PEOPLE: What’s been happening with your health?
Kara: In December 2011 I found out I had a BRCA2 gene mutation, which my doctor said meant my chances of developing breast cancer over my lifetime were as high as 80 percent, and up to 30 percent for ovarian cancer. My grandmother had breast cancer, and my mother [passed away after she] was diagnosed with ovarian cancer at 50.
PEOPLE: How did you find out you were a carrier?
Kara: It was by chance. I was in New York doing Chicago [on Broadway] and I was staying at my aunt’s, puttering around, getting ready for the show. I never watch daytime television on a weekend, but for some reason, I turned on the TV and there was this journalist, Stacey Sager [at WABC-TV New York], talking about how people in her family had breast and ovarian cancer, how she’d had breast cancer, and had a genetic test. And then I started paying attention.
I’d never heard of the BRCA gene or anything you could do to reduce your chances of getting cancer. Once I started listening, I thought, “This is something I definitely need to learn more about.” So I called my doctor and when I got back to L.A., I had the test.
PEOPLE: What happened when you got the results?
Kara: The first thing that went through my mind was, “I bet you my mother had this.” And then I thought, “Wow. If she had known, it could have been a different story for her.” Then I thought about how lucky I was to have the knowledge, and that led me to “What can I do to diminish my chances?”
It completely changed my life because it made me have to think about my mortality a lot earlier. It stopped me dead in my tracks and made me prioritize my health. I had to think about it in conjunction with the fact that I was trying to have a baby. I knew I was at an increased risk for cancer, and it’s bringing me back to seeing what my mother went through and how hard that was on me at a young age, and how I don’t want to put my child in the same predicament if there’s some way I can stop that from happening. It made me approach it like it was something I had to deal with right away so I could figure out what my options were.
PEOPLE: So what did you do next?
Kara: Because I’d been in this high-profile position with Idol, organizations had reached out to me when they found out my mom had ovarian cancer, like the David Barton Gym, which does an event every September to raise money for ovarian cancer research (Barton’s sister died of the disease). And my best friend Suzie had a friend who had ovarian cancer; they later put me in touch with The Clearity Foundation.
I’d done the Run For Her race that raised money for the Women’s Cancer Program at Cedars-Sinai, where my doctor Beth Karlan is. There was all this synchronicity. Because I was involved in some of these charitable endeavors, when the time came that I needed experts — The Basser Research Center for BRCA at the University of Pennsylvania is also great — I could ask them for information and resources. I was very lucky.
PEOPLE: When you got your BRCA2 gene diagnosis, you were also undergoing fertility treatments. How did that affect you?
Kara: I started trying to get pregnant at 38. I did a lot of things: I had surgery for endometriosis. I had polyps removed. When I was on Idol I actually got pregnant, then miscarried. We tried IVF.
My doctor told me [prophylactic surgery] could reduce my chances of getting cancer by a significant amount. (Note: According to medical experts, most BRCA1 and BRCA2 carriers are strongly urged to consider ovary and fallopian tube removal before or around age 40 as a way to decrease breast and ovarian cancer risk.)
When I found out I had the BRCA2 mutation, a timeline came into play: At first I thought, “Well, I’m not going to do the surgery right now. I’m going to do one more round and see if I get pregnant.” And I didn’t. Then I realized that I could go through this, keep doing it and doing it, and pushing my luck. But now I know I have the BRCA2 gene. I’m putting chemicals in my body. I am prolonging it. I’m getting older. And I didn’t know if I could even have a baby at the end of it. So I took a calculated risk.
PEOPLE: What about your hopes to have a baby?
Kara: We’d hired an adoption attorney, we had the pictures, the book, had it all ready to go. Then … I knew this woman, a friend, and on a whim I asked somebody to bring [gestational surrogacy] up and get her thoughts on it and she seemed open to it. She came over with her husband, talked it through, and we negotiated it together.
Over the course of three years, [my husband and I] had done seven embryo transfers into me. The eighth was transferred into our surrogate and it took! When I had the surgery, it was helpful to know that this amazing woman was carrying our child and I was taking care of things to ensure I’d be around to see our son grow up.
PEOPLE: What happens with your health from here?
Kara: I’ll have to be evaluated every six months. I still have my natural breasts but I would consider having a prophylactic mastectomy [if my doctor recommends it].
PEOPLE: How do you feel now? Any regrets?
Kara: I feel that if this had to happen to anyone, I’m glad it happened to me because I had the resources. I was very lucky — I made a lot of money doing what I love.
I have absolutely no regrets because now I feel empowered in my body. I feel like I took back some of the fear, took back control of my life and hopefully enabled my child not to have to go through watching his mother in a chair hooked up to chemotherapy. I think that when it comes to your health, you have to look at it like, “Not only does this affect me, it affects everyone around me — my kid, my husband, my friends.” And if there’s a way to possibility reduce it, it’s kind of a no-brainer.
I felt it was my obligation to do something about it, kind of to honor my mother in that way. What would a mother want for her daughter? To take the test and take it seriously. And live — live the life she couldn’t live.
PEOPLE: How do you feel post-surgery?
Kara: My brother asked me, “Does removing your uterus and ovaries make you feel weird about being a woman?” And it did make me sad — the finality of knowing I’d never be able to feel a life inside of me. But I came to terms with it by looking at all the things I did have, and being thankful for those. Listen, everybody in life has things that don’t work out for them. But look at all of the wonderful things that did work out for me — I concentrate on that.
PEOPLE: How did your health and fertility struggles affect your marriage to Mike, 38, a teacher-turned-contractor?
Kara: It definitely made us stronger. His first concern was always me. I couldn’t have asked for a better husband. And I wouldn’t trade it happening any other way because I got to experience my dream. My 20s were about taking care of my mother. My 30s were about me, my career and becoming a successful songwriter and publisher and making money that has enabled me now to have an incredible life where I got to marry the guy that I wanted to marry. Unfortunately that timeline put me at risk for fertility issues because I was older. But I wouldn’t change it because I wouldn’t have my husband.
That journalist on the news that day in New York, Stacey Sager, may have saved my life by telling her story. If I can talk about this and there are even just five people out there who read it and get tested, it’s worth it. For me, if I can help somebody else, it makes having the gene a lot easier to deal with.
PEOPLE: When you’re holding your son now, what do you think about?
Kara: I always think about the amazing surrogate, how she gave me this precious gift. It’s kind of overwhelming sometimes, that someone would do that for me. And I think how I would go through it all again — the five years of infertility, the shots, the operations, the whole drama — just for him. He is perfect.
PEOPLE: Tell us about Greyson! What’s he like?
Kara: He’s a chunky monkey! He’s 17 pounds now. He’ll sleep for about six hours a stretch at night. He’s a really good baby — very happy except when he’s hungry or has gas, which is when I have an insight into his vocal pipes, which are extraordinary. Otherwise, he’s calm and is a total sweetheart. Sometimes he’ll scream because he doesn’t like his car seat, but when I turn pop radio on, as soon as he hears the bass, he stops. He is so my baby!
PEOPLE: How’s life in Maine?
Kara: I love it. There’s this great group of women here — the mommies of Maine! Because of my husband being from here, I get this other side of life. The music industry is a tough industry; you can lose a bit of your sensitivity. But I feel that I gained a lot of my sensitivity back through my relationship with him. I really believe I’ll be a better mother because of him.
Mike has a [16-year-old] daughter, Elora, and she has a great mom. I understand that Mike had this life before me, so we decided to base ourselves in Maine. It’s important — a daughter needs her dad. Actually my stepdaughter, husband and I did Greyson’s nursery together. At first I said I wasn’t going to do all the cheesy baby stuff. Yeah, right! That went right out the window. I got these animal decals and Elora says, “You sit down, I’ll handle this.” She’s been a big help.
PEOPLE: How are you adjusting to motherhood and balancing it with your music career?
Kara: I just came back from Nashville, where I was working with Jana Kramer and Raelynn, who was on The Voice. That was my first trip away from him and that was pretty hard. When you have a kid at home, you really knock out work in a way where you don’t waste time. I was all work, no play; but the sessions were still really fun.
Next I’m taking him to Washington, D.C., which will be the 15th state he’s been in — we drove across the country [from L.A. to Maine] in a minivan after he was born. His favorite rocking chair is the car. But I’ve never been one of those parents who’s like, “He won’t sleep — I’ll put him in the car!” If I were to drive in the middle of the night, I’d crash the car — I’m so tired. I’m barely awake!
PEOPLE: What’s your favorite time of day with him?
Kara: The morning for sure. It’s the best. He wakes up in a great mood, smiling. We have a routine before my husband goes to work: baby massage, we do a book, some tummy time, then depending on how ripe he is, we do a bath. We just spend that time together.
PEOPLE: Is he growing into his name?
Kara: It’s funny — the name Greyson is very gentile, erudite, restrained. He isn’t reserved at all. He’s so big, sometimes he tips over, it’s unbelievable, you can’t keep him down. He’s constantly belching. I feel like sometimes I’m living with a college kid in a fraternity!
Part of why we named our baby before he was born was so the surrogate and I could refer to him as somebody, so we named him, talked about him as Greyson. But sometimes you have to see their face to know, “Okay, that’s the name.” After Chunky Monkey, we’ll probably call him Grey.
I think we gave him some options: There’s his full name — Greyson James Carroll McCuddy — which works if he’s a writer or author. And if he’s a rock star, he can be Grey James. Right now he’s a rocker: He’s loving the music, moving around, he’s not graceful, he wants to raise some hell. And he loves hip hop, so maybe his name should be Grey-J!
For more on DioGuardi’s health journey and her life as a mom, pick up the current issue of PEOPLE, on newsstands now.
– Marisa Laudadio