BY JENNY SCHAFER
Happy Days are here again for Scott and Renee Baio! After going through a terrible health scare when their daughter Bailey was first born, this Hollywood couple is now turning their negative experience into a positive by helping other families in need and advocating for newborns worldwide.
Celebrity Baby Scoop spoke exclusively with Renee Baio, wife of Scott Baio, as they prepare to host the first Bailey Baio Angel Foundation ® Celebrity Baby Yard Sale. The goal of this fundraiser, held on May 30th in Studio City, CA, is to raise awareness and much needed charitable funding for the metabolic disorder known as G-A 1 and other OA’s (organic acidemia metabolic disorders).
Renee and Scott’s daughter Bailey tested positive for G-A 1 within days of her birth. Renee, a fan of CBS (“I love your site”), opens up about the weeks that followed Bailey’s diagnosis, her goals to raise awareness about metabolic disorders and other OA’s, the necessity of screening all newborns for these disorders, and how Bailey is doing now.
Click below to read the full interview
CBS: Tell us about G-A 1 and other OA’s and how you and Scott have become spokespeople for these disorders.
RB: “Within days of Bailey’s birth, she tested positive for G-A 1. This metabolic disorder, like other OA’s, can cause brain damage and even death. We went through 10 weeks of hell. It wasn’t just the waiting game – she was born 5 weeks early and was down to 5 pounds. She was poked and prodded for 10 weeks. At 11-days-old we went to UCLA Children’s Hospital where they cut through 7 layers of her skin for testing. She will have a scar for life from that test. We also had to get urine samples from her which was very difficult to collect. Not only all of this, Bailey’s twin died before birth. So we had been through so much at that time.”
CBS: You and Scott have been through so much. We’re sorry to hear about the loss of Bailey’s twin.
RB: “Thank you. It was hard. We lost Bailey’s twin at 12 – 14 weeks of gestation, right before finding out the gender. In a way I’m glad we didn’t know if it was a boy or a girl. I think it’s better that way.”
CBS: Were the twins conceived naturally?
RB: “Yes, a lot of people have speculated otherwise, but they were conceived naturally.”
CBS: How was Bailey diagnosed in the first place?
RB: “With the ENBS (expanded newborn screening) test, the G-A 1 starting levels/table starts at or around 0.35 and Bailey’s results came back at 0.35. The state of California requires further testing if a newborn falls within the table, even if it is on the starting point level. After the next round of blood tests, Bailey’s came back at 0.9 and for that test the starting point is 0.5 so her level was showing a higher read and for G-A 1. However the urine was negative each time she was tested. We had to continue with both the blood and urine tests about every 4-5 days. The skin tissue test was done on day 11 after her birth. That is the most positive way to know if a person has G-A 1. Both of those tests – these are the tests you have to wait 2 1/2 -3 months for – were negative. Bailey’s final round of tests had been false positives. She was healthy after all! We were unbelievably relieved and felt very blessed!”
CBS: Did you and Scott consider legal action because of this horrific ordeal?
RB: “No. We did not sue or even think of suing because of the false-positive results and hell we went through. We still have people telling us that they would have or that we should have. We aren’t the type to sue. After all was said and done, we have a healthy child.”
CBS: You and Scott are so great to continue raising awareness for this cause even though Bailey does not have a metabolic disorder.
RB: “How could we not? Families need to know about the necessity of newborn screening. It’s not the law yet for all newborns to be tested, but it should be. At this time, expanded newborn screening is not a law in all 50 states – it is only available in 17 states so far. ENBS tests for up to 50 disorders. These disorders are genetic, meaning both parents are carriers and have the same exact recessive gene. The ENBS test helps the child get a jump start on a low protein diet to help prevent a metabolic crisis. At this point there is no cure. Just knowing and getting a head-start can cut down the risk of permanent brain damage, cerebral palsy, dystonia, and death. Most every child will have special needs as they are slow in motor skills and have a lot of speech problems. If a metabolic crisis occurs, most children can’t even speak because most of them have strokes.”
CBS: I guess the saying is true: everything happens for a reason. It sounds like you and Scott have found a new mission in life.
RB: “We really have. We feel so blessed with our daughter and now it’s our turn to help other families who aren’t as fortunate. If we can use our voice to help others, we will. Not only do we want to help raise money, our goal is to make it mandatory for all states – and even worldwide – to test all newborns.”
CBS: Tell us about The Bailey Baio Angel Foundation ® Celebrity Baby Yard Sale.
RB: “It’s going to be held on May 30th in Studio City. Celebrities will be donating their gently-used baby items for auction. The Quaid family has donated 2 signed baby walkers and 2 signed high chairs. Bailey and the Quaid twins are just 6 days apart. We also have a signed “Bolt” poster from John Travolta and a signed guitar from the band Sugar Ray. Stride Rite is hosting the fundraiser and there will be over 50 celebrity go-to companies selling their new baby gear and apparel for less than retail, so people will get good deals. Ladybugs & Lullabies is another main sponsor. Samantha Harris from Dancing With The Stars is on board and Ali Landry will be reporting. Entertainment Tonight and other media will be there to cover it all. We hope it will raise awareness and a lot of money for the cause.”
CBS: Will there be a way to order any of these items online?
RB: “Yes, we will set up an online auction on ebay after the event.”
CBS: Can we tell our readers where they can order after the event on May 30th?
RB: “Yes, I will get that information to you.”
CBS: Where will the money raised go?
RB: “The funds will go to deserving children and families living with metabolic disorders. Insurance doesn’t cover dietary needs, food, feeding supplies and other equipment. Often families can’t afford these basic needs and supplies so we’re hoping to raise lots of money for them.”
CBS: Tell us more about the angels in your foundation.
RB: “We’ve been in contact with our first angel, Lily, since July of last year. She has G-A 1. She is now 6-years-old. Scott had a very hard time meeting her as this is the same disorder that Bailey could have had. Lily did not have the ENBS test. The test wasn’t even offered although the cost is only $25. She was born in the state of Colorado and at that time Colorado didn’t have the ENBS, they only had routine newborn screening. But had a doctor, nurse, or other hospital staff just told her mother, Sarah, that she could pay just $25 to get the expanded newborn screening tests, she could have taken the precautionary measures to avoid a metabolic crisis – Sarah could have put Lily on the low protein diet and vitamins right away. Colorado has the ENBS now for every newborn in that state, partly because of Lily’s mother pushing and pushing for it.” (see pictures of Lily and Sarah with Renee, Scott and Bailey in thumbnails below)
CBS: What a heart-wrenching story. It really makes you wonder if Lily’s condition could have been prevented.
RB: “This is why Scott and I are so passionate about advocating for ENBS testing worldwide. We have another angel in our foundation named Damian – he’s 1. He has 3MCC and did get the ENBS. 3MCC & G-A 1 are both OA disorders and G-A 1 is one of the most severe. When you look at the pictures of Damian and Lily, you can clearly see the difference in their quality of lives (see thumbnail pictures of Damian playing with chalk). Damian’s mother, Laura, originally reached out to me from our foundation website when he was in the hospital. Damian’s doctors wanted to remove his IV and discharge him from the hospital because they didn’t believe he had the condition. Within an hour of taking him off the IV, he was non-responsive and started going into a metabolic crisis. That’s when my doctor stepped in and demanded appropriate care for his condition. If a child gets dehydrated or a fever, a metabolic crisis can occur. If they had sent him home and taken him off IV and fluids, he could have been just like Lily. Laura credits me as having played a part in saving Damian and for his good quality of life because he ended up getting the appropriate care after all. I wouldn’t stop pushing for tests and I do think of him as my ‘lil man – my son. This one example alone makes this journey worth it – to have saved one child.”
CBS: This is an amazing story. The work you and Scott are doing is so important! It sounds like you’ve put in a lot of time, effort and perhaps even your own money into this cause.
RB: “Yes Scott and I have been out of pocket. But now we have our non profit cleared from the IRS.”
CBS: How is Bailey doing now?
RB: “She’s great – she’s a climber! She’s 18 months now and her hair is blonde and curly! She has this beautiful blonde hair and these big beautiful blue eyes from my side of the family. Scott jokes that having a blonde-haired, blue-eyed girl is God’s karma – God’s way of getting back at him for his past with the ladies. Scott is already anticipating when she’ll bring the boys home. He’s already thinking about how he will greet them at the front door.”
CBS: Do you have a nanny for Bailey?
RB: “I refuse to let someone else raise my child. I refuse to have a nanny. I have an older daughter, Kalyn – she’s 19. I missed so many of her milestones because I was in school and working. I had her when I was young – I missed so much. I don’t want to miss anything this time around. Bailey has never stayed with another caregiver – only my daughter or my husband. On Scott’s TV show, they made it look like Bailey was being cared for by a baby nurse, but that was just for TV.”
CBS: So you and Scott don’t go out ‘on the scene’ in Hollywood at all?
RB: “We’re not into that. The company we keep is outside of the typical Hollywood scene. Bailey has never had a babysitter.”
CBS: So you don’t go to red carpet events and whatnot?
RB: “Well there’s one coming up for the children’s hospital and all 4 of us will go – Scott, Kalyn, Bailey and myself. If Bailey is napping, then Scott will go with Kalyn. You know, we could pay a nanny $700/week to help out. It’s not a money issue, it’s a moral issue. And you know, you can really see the quality of care in the kids. We were just at a birthday party for some twins, and you can tell which kids had nannies. They were running around, not listening, and didn’t deal well with discipline.”
CBS: You have worked in the industry as well.
RB: “Yes, I was a stunt woman for 9 years. I also have degrees in finance and advertising.”
CBS: You and Scott seem like such ‘normal’ and nice people. Your Southern charm and warmth is evident. For instance, in setting up this interview, you gave me your home phone number. I was expecting to call an agency and set up an appointment with your PR rep – but you actually answered and just started talking to me! That just doesn’t happen in Hollywood!
RB: “Well thanks. I’m from Tennessee – I’m as country as a turnip green! And both Scott and I have been through a lot. You know, he was born to do the things he did and he had his fun. Now he’s ready to be a family man. And if I had to rate him, he’d get an “A” because most men would have left during the tough times. But instead he was my rock.”
CBS: It sounds like you’ve had some tough times, but it only made you two stronger.
RB: “Definitely. We’re coming up on our second year wedding anniversary. We were already engaged for quite some time before getting married right before the baby arrived. And my teenage daughter moved in just weeks before Bailey’s birth. So he was dealt with the father card and the stepfather card right away into our marriage. Then when we went through Bailey’s diagnosis – it was really hard on him. His father died, and then we found out I was pregnant the next day. Then we lost Bailey’s twin…. and then everything we went through with Bailey. He can’t really talk about it anymore. He crumbles. You know he’s been in the public eye since he was 9-years-old. He didn’t know how to deal with it. Here he was a first-time father and Bailey might’ve had special needs. Everyone around us was having healthy kids, and then this happened. It was hard on both of us, but it only made us stronger. And now we’re so passionate about helping other families less fortunate than ours.”
CBS: Do you and Scott want to try for more children?
RB: “No more babies for us. I wanted a son but we are too afraid after what we went through.”
CBS: We hear you’re up for an award because of this important work you are doing.
RB: “Yes, we are being honored with a Global Humanitarian Award. This special event is being held on May 31st – the day after our fundraiser. Both Scott and I are hosting the event as well as being honored with the Founders Award.”
CBS: What’s next for the foundation?
RB: “We’re planning another fundraiser in September since it’s newborn screening awareness month. Our goal is to raise awareness on the importance of screening newborns worldwide. We are also continuing to urge insurance companies to supply families living with metabolic disorders with the supplements and support they need.”
CBS: Any last words?
RB: Yes, I will sign off with our BBAF official quote: “Be an Angel for an Angel in need.”
Go out and meet your favorite celebrities at The Bailey Baio Angel Foundation ® Celebrity Baby Yard Sale on Saturday, May 30 in Studio City, CA! You’ll find reasonably-priced, gently-used baby items from celebrity families as well as new baby gear and apparel for less than retail from over 50 celebrity go-to companies. Admission is a $10 donation toward the foundation – and parking is free!View Slideshow »»