Scott Baio and wife Renee fight for expanded newborn screening following health scare


 
 

By Maria Pilar Clark

Contributor and blogger

Scott and Renee Baio were blessed with a baby girl last year, but found themselves dealing with a life-threatening condition known as Glutaric Acidemia - Type 1, at what should have been the happiest time in their lives.

As a result, they set out to create the Bailey Baio Angel Foundation, an organization dedicated to raising awareness of metabolic disorders and the importance of funding expanded newborn metabolic testing in hospitals nationwide.

When not promoting their foundation's mission, the Baio's are like any other parents getting through the little bumps in the road, balancing work and home life, all while watching their daughter grow up.

Scott, do you think waiting such a long time get married and start a family made you a better father in the long run?

Yes. I wasn't ready mentally or emotionally before that and lived a sort of Peter Pan existence for a long time. I worked and had a few responsibilities but nothing to really write home about. I had the luxury ... or the disadvantage of being carefree for a very long time.

At a certain point it got old and there was no meaning. I'm a deep spiritual guy, I'm a Catholic guy from Brooklyn, but I sort of walked around going, 'What am I doing?'

It's all about timing. I knew my wife for a bunch of years before we went out and just sort of happened to run into her at a restaurant and started going from there.

There are more than 10,000 registered Scott Baio fan clubs. Do you feel like an icon or teen idol?

No. It's all subjective. It's nice and sounds ok - thank you - but it all seems out there somewhere.

Like an intangible reality?

Yes. I don't want this to sound flip but it's my life. There's a great George Harrison quote - and I'm not comparing myself to him, but someone asked him what it was like to be a Beatle. He said, 'I don't know, what was it like to not be a Beatle?'

Does 19-month-old Bailey know or care that you're famous?

She has no clue. She will see me on television and she screams when she sees me but doesn't quite put it together. She just looks at me and laughs but I don't think she really gets what's going on.

Would you want her to follow in your footsteps with acting?

Probably not. Too much down side. It's a great gig and if you get lucky it's an amazing ride, and I've been lucky to have a couple of rides. But that is so rare that I don't think I'd want her being around people like me.

Any television projects in your future?

I think so. I'm working on two things right now. Other than that, life is funny. Things change. Your wants and needs change. Your goals change. I just don't know. I love to play golf so much I don't think I care if I work or not. I love my work, my business, but it doesn't really drive me any more.

Are you mainly sticking with the Bailey Baio Angel Foundation at this point?

I never really thought about it. In this business you wing it a lot. You just sort of take what comes and yay it or nay it.

You have a very zen attitude about life, it seems.

Wow! I've become a zen man. It took long enough. I think it's what happens with maturity and age.

Or with fatherhood.

I think fatherhood has a lot to do with it. Your perspective changes. Every couple years people change. I just want to be a good guy and a good father and that's about it. Everything else is gravy.

What's your favorite part of being a dad?

All the universal things, really. But my favorite thing about it is to see her enjoy the things I enjoy. I take her out as much as a I can. She loves to feed the fish. She loves to play. She loves to be on the grass. It's such a long answer, I don't think I can be specific.

She looks at me sometimes with such wonder. And sometimes she's mad at me and you can see that look in her eyes and I love that about her, too. There's a million things that I love about her. I play with her, I drag her on the floor on a blanket and she screams and loves it.There's all that cornball parent stuff that you do that you never would have done if you didn't have kids. If people told you would have been doing it you would have said, 'You're full of crap. You're stupid. I'm not going to do that.' And now you're doing it.

I used to see people walking their kids around restaurants and I used to think, 'You idiot, just put the kid in your lap.' And last night, there's me, walking around the restaurant holding her hand. And it wasn't even like, 'Dammit the kid wants to get down,' it was, 'I'm taking a lap. We're taking a lap.'

It's those things - those small things about a child that warm your heart.

Does she have any favorite words?

She says the word, 'boobies.'

So she takes after you.

Ha! My wife taught her that. She's a huge Tom Jones fan. I have him loaded on my computer. I'll put on his picture and she goes crazy.

Any more kids for you?

I don't think so. We had a rough experience with Bailey, and I don't know if I'd want to go down that road again.

Renee, your pregnancy didn't go as smoothly as you'd hoped?

I had my older daughter, Kaelyn, at 33 weeks and 5 days. She weighed 7 lbs. 4 oz., which is pretty good for that early. I was a single mom and had her on a military base. There was nothing glamourous about it. She had to stay in the hospital for nine days because she had a breathing problem and jaundice and all these other problems. So I guess you could say I'm not accustomed to normal pregnancies.

Tell me about Glutaric Acidemia - Tpye 1.

Basically, I just thought we had a baby five weeks early and that the only reason we stayed in the hospital was for the C-section. I thought we were bringing home a healthy baby - all was good.

The next day after we brought her home, we got a phone call from the hospital asking us to bring her back because there was something wrong with the newborn screening. I saw the Band-Aid on her foot from the heel prick and it didn't faze me. I knew all kids got tested, though I didn't know for what, and knew whatever testing had to be done just like the hearing test.

So we took her to the hospital to get blood work done, and since I went that route with my first daughter, I had Scott take her back there. It was the longest ten minutes I've ever lived through her screaming.

Then, we got another call that we needed to do a urine test. They had to strap a little bag on my daughter beause it's so hard to get urine from a newborn. About three days later, someone from the state of California called to see if we had followed up on our secondary testing. I played the total dumb blonde role and said we were in the process of doing so, but to tell me what all the tests were so I could make sure we were getting all of them taken care of. No one at the hospital had told us what they were testing for, which makes it more scary.

As the lady is telling us, I'm Googling and it's the worst possible metabolic disorder there is. The first thing that popped up was mental retardation, then metabolic crisis, cerebal pasly, feeding tubes. Most kids don't live past 8-10 years of age. That's when I became like a journalist and was on the computer all the time trying to educate myself. When someone doesn't want to tell you that makes you want to know. You have to work through it in your own way.

After starting the Bailey Baio Angel Foundation, were you surprised by the overwhelmingly positive response you received?

Our first fundrasier had a reasonable goal of $10,000, and that was my personal goal having never done that kind of event before. Total sales and donations in six hours were over $16,000. We surpassed the goal, but in the end, forget the money, it's about bringing awareness. If we can educate one mother who's pregnant to get an extended newborn screeining test regardless of whether her state has one or not, then we may have saved a life. The awareness is the cherry on the top. It's the gravy. It's the main focus and the main focal point for my foundation. We had never heard of metabolic disorder until it affected us. Hopefully we've saved a life or two, and that alone makes it worth it.

Tell me about your partnership with Smart Mom.

I love them and met them at a celebrity baby gifting event on January 11, 2008. I will never forget it. Bailey was exactly 10 weeks old, and that was the day we found out she was ok.

I had given the hospital authorization to give us her test results over the phone and when the phone rang it was in my diaper bag so I didn't hear it. When we were in the valet line waiting, I saw that they had called, but it was the one day T-Mobile was upgrading their voicemail system so I couldn't get to it, though I could clearly that the call was from Childrens' UCLA. So I walk into the house, and try to listen to our voicemail, and the cordless phone needed to be charged so all I heard was, 'Hello, this is Erica from UCLA ... click.'  I had to run to the other end of the house to redial the number and the whole time Scott is screaming at me. When I heard the news I hit the floor. It was a false positive. I couldn't get the words out to say she was ok.

Scott was probably thinking the worst.

I had to replay it and put it on speaker phone for him and my daughter Kaelyn to hear. And now I tell you, I wear their jewelry with pride.

There's less than 100 people in the world that have GA-1. In the U.S. alone, every day there are six children that have a metabolic disorder of some sort that goes undetected. And they're not going to know until that child has some kind of metabolic crisis. The damage is irreversible and can cause coma or even death.

The test is only $25 out of pocket. There are only 17 states out of all 50 that have the expanded newborn screening. It can detect up to 50 disorders. I think it's a political issue as a well as a moral issue. I think insurance companies should step up and provide the testing. I believe every child born in the U.S. should have it. I believe they deserve it. I believe that if Blue Cross Blue Shield, being as big a company as they are, can afford to offset the cost for Viagra, then they can not only afford to pay for the extended newborn screening for every child, but they should also pay for the low-protein formula that these babies need for the rest of their lives.

It's all about educating people. We're working a pamphlet on our website that people can download and print. $25 is two movie tickets these days, or even a magazine subscription or a tube of lipstick in a finer department store. It will also save your child's life.

We first told our story Father's Day weekend last year, and within two weeks time we were receiving anywhere from 150-250 emails daily, and the majority were from people affected by metabiolic disorders. It was like an underground community that surfaced. Nine times out of ten, those emails were saying, 'God forgive me, but I was praying that someone in the public eye would be affected so we would be heard.'

That's one of the main reasons we started this foundation. So these people can be heard.

I made a personal promise to my God. Give me a healthy child because I don't have the strength to be a special needs mother. I'm not one of those people who has the strength of biblical characters. I'm not Anna or Ruth. You give me a healthy child and I will devote my life to helping these people.

That's why I'm so passionate about it. I'm keeping my word to my God.

Convonista says: Talking with Scott and Renee was such a wonderful experience. Scott was open and candid, and Renee just amazed me. Her dedication as a mother and advocate is unwavering. This interview was originally released in 2008.

 
 





 
 
 
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