Scott Baio and his wife Renee went through a horrific health scare after their daughter Bailey was born. Testing positive for G-A-1, an organic acidemia metabolic disorder, Bailey went through a series of tests only to find out weeks later that she did NOT in fact have the disorder.
Renee took this experience as a sign and started up the Bailey Baio Angel Foundation to raise awareness, funding and to help as well as aid other families going through the same difficulties as they had.
This amazing mama and her hunky hubby Scott, have teamed up with one of our favorite companies, Ooh! La, La! Couture, for an exciting project to be revealed within the next couple of weeks. In an exclusive interview with Child Mode, Renee spoke about the need for comprehensive newborn screening, the Bailey Baio Angel Foundation, her daughter Bailey and an exciting birthday event for Mr. Scott Baio!
CM: You and Scott founded The Bailey Baio Angel Foundation, named after your daughter as a way to help families with children who suffer from an O-A or G-A-1 disorder. You have both done an incredible job raising awareness on these disorders! For those who are not familiar with GA1 and other O-A’s, can you give us a little bit of a background on these disorders?
It starts out with both parents having the same recessive gene. Every person has around 30,000 genes so it is really a needle int he haystack. There are more than just G-A-1 and G-A-2 there are many variations of different disorders that are organic acidemias.
What happens with babies who have a metabolic disorder, is their livers can’t process the proper amount of protein. It then builds up and the body rejects it, sending a signal up to the brain causing a metabolic crisis. So, if a baby is not diagnosed or flagged at birth, a new mother could be breast feeding her child and that in itself could cause brain damage to her baby due to the high protein in breast milk. Once they are flagged at birth, babies can be put on a low protein, metabolic formula along with timed breastfeeding to know how much or to estimate how much the child is consuming.
This crisis is brought on by a fever. An OA baby could go into a metabolic crisis just from having immunizations because that usually brings on a low grade fever. With metabolic babies, they have temperatures that naturally 3 or 4 degrees higher, and again that triggers the amino acid that triggers the brain. Everything is permanent. It’s permanent brain damage, and it can happen within an hour, so time is crucial when getting these babies to the hospital.
When we were going through this with Bailey, we had to carry a note from a metabolic doctor explaining to a care physician, on how to treat a child. Time isn’t of the essence when a child has a fever, however with an OA baby, it is life threatening.
CM: Are there any signs of this when they are born?
No. There are 17 states (California is one of them) that do comprehensive newborn screening. Some people call it expanded newborn screening but it is the same thing as comprehensive.
Bailey was right on the line. After we did her secondary testing, a social worker called us the day we came home from the hospital. She said there was something abnormal with Bailey’s screening and to get to the pediatrician’s immediately.
Because she was born 5 weeks early, Bailey was only 5 pounds. Every three days, the doctors were trying to shove needles in her to take out the blood (she had no veins), they had to tape a bag on her in order to collect the urine for testing, and yet her urine was always normal.
When she was 11 days old we had to take her to the Children’s UCLA, and they basically punched a hole in the left upper inside of her arm. They did a 7 tissue skin test, where they would grow it in a petri-dish, cut it in half, and then inject each one with a GA1 and wait to see if it came back positive. This is the only conclusive way to know if your child has it and the only place that offers this testing is in Denver.
It came back totally normal. We found out when she was 10 weeks old.
CM: Your daughter Bailey was falsely diagnosed for G-A-1. Does false diagnosis happen frequently? How did the doctor’s make such a serious mistake in her diagnosis?
That is a very good question. Because they are so rare and States are just starting to test for metabolic disorders, they don’t know where to start and where to cut off other than of course the cases they have had so far.
I forget exactly what the number was, but the time table was 0.33 and Bailey’s came back at 0.33 and then the next was 0.04 and Bailey’s was 0.09. That could have been right after she was breastfed or something, I really don’t know why. We didn’t do any DNA testing or anything like that.
I can tell you that originally I was pregnant with twins and I lost her twin in the second trimester. When we were going through what we did with Bailey, I lay down in the mid day to take a nap and I don’t know if it was God or if it was a dream, but whatever it was told me that our baby had a metabolic disorder and Bailey was just a carrier and that we were put through this to know what happened to our other baby.
CM: When you found out your daughter was healthy with no sign of G-A-1, what drove you to start up the Bailey Baio Angel Foundation?
When I was researching for my daughter, I couldn’t find any resources online or anywhere else. There was only one website that provided some info, but they only do the research. There was no support, nobody was helping these families. My husband is a celebrity, but I had no place to go.
We found out January 11th 2008 that our daughter was completely healthy. On Father’s Day weekend we broke the news to People magazine and Entertainment Tonight and began receiving anywhere from 100-300 emails per day from parents who had went through or were going through the same thing we did. I received one email in particular that said, “ I have been praying for this to happen to someone in the media. Thank God you dodged the bullet, but now you are advocating for it.”
CM: What does the Bailey Baio Foundation do other than raise awareness for metabolic disorders?
We promote comprehensive newborn screening and educate pregnant women. We want to lobby and get every state mandated to pass the legislation to have comprehensive newborn screening and of course, we want to continue to provide emotional support and aid to these families that are affected by it.
Although we do not pay money directly to the families, we do help with the costs. For example, metabolic formula is $22 a canister, which can add up quickly. The majority and most insurance companies will not pay for it. If you live in a state that doesn’t have comprehensive newborn screening, we have a form on our website that you can fill it out. If you qualify – meaning if you can’t pay out of pocket – we will send you a kit. Once you go in labour you take it with you, the carbon filter has 5 dots as opposed to 3, that detects up to 54 disorders. We then get billed the extra money from $25-$150 and we will pay for it.
CM: This year, you have teamed up with Ooh! La, La! Couture for a special event during Scott’s 50th birthday in September! Can you tell us a little bit about the event? How did this partnership come about?
Oh I love them! Ooh! La, La! wasn’t around with my first child, but Miss Bailey is all about the Ooh! La, La!, she loves that kind of stuff.
Scott’s birthday is the 22nd but we are holding this event on the 26th, and it will be held at the famous Garland family-owned hotel, The Beverly Garland. The hotel is landmark here and a staple to the valley as it is adjacent to the Universal Studios. It has a real Old Hollywood style feel to it. The event will be a black tie gala for families as well as couples and singles – there is no age cap. We will have several kids there because we will also be holding a fashion show!
We met the ladies at the Emily Grace event earlier this year and we spoke a bit about what we do with the Bailey Baio Angel Foundation. They invited us to the walk in Santa Monica earlier this year and we really got to know them well. We invited them over to the house and built a great relationship. They had this idea to create a special dress especially for the Bailey foundation. It is a gorgeous dress! It is completely custom, and is quite different from their other designs. It has the wings embroidered and embellished with rhinestones – just gorgeous!
Ooh! La, La! is giving us around 100 dresses to sell straight at 100% profit with all proceeds going to the foundation. They will be limited edition pieces, available in various sizes for children from 12 months-10 years. They will be available to purchase exclusively through our website, in a couple of weeks.
Is Scott’s Birthday Event open to the public?
Yes! You can go to BaileyBaioFoundation.com, where you can buy the tickets through Paypal. We only have about 36 seats left of the 125 dollar tickets and then the 4th row $100 tickets we only have about 30 tickets left and then the event is sold out.
Just a few of the celebrities confirmed include: Christopher Atkins, Tracy Gold from Growing Pains and Thomas Calabro bought an entire table for $2500.00 – he was Dr. Michael Mancini on 90210. Jerry Douglas will also be there, he played John Abbott on the Young and the Restless for 30 years. You know, he sounds just like Frank Sinatra! Go to JerryDouglasMusic.com to check him out, he is fabulous! His wife Kim Douglas is hosting the event for us. She is a beauty and health guru and also a correspondent for Good Day LA and Ellen Degeneres.
Adam Hunter, the comedian from Last Comic Standing, will be performing as well doing some stand-up comedy.
CM: Your daughter Bailey will be turning 3 in November! How is she doing? Will she be starting preschool this year?
No. I missed all of my first daughter’s milestones because I had her during my first semester of college, when I was a teenager. I was working 1-2 jobs, so I missed most of her milestones. With Bailey, I wanted to really be there. For one, I refuse to have a nanny. I haven’t had a nanny, not even for a day. Scott and I are here almost every day.
I am quite old school as I think preschool is just the year before real school. I want my daughter to be a kid. If i was a single working mom, I would be all for it, but that isn’t the situation, so I’ve opted not to. We take her to a mommy, daddy and me class where they have Italian classes. It is 1 hour and 15 minutes , once a week. She has picked up quite a few Italian words.
We also want to start her in dance lessons, because she is very much into music and dance!
CM: Have you heard of Little Pim? My daughter’s and I love that program!
Yeah we have that! We watch Little Pim in our house as well.
What is Bailey into these days?
Alice in Wonderland! I bought her the Alice in Wonderland the TV version from ‘84 or ’85, the one Scott was in and then I bought her the original Alice in Wonderland and she fell in love with it! So she loves her and is also all about Jessie from Toy Story.
CM: Bailey is always dressed up in fun and frilly outfits and skirts. Is she very much into fashion?
She is very much into fashion and pretty much picks out her own outfits. In her closet I have all the long sleeve dresses in once section, all the short sleeve in another, her skirts, tops, everything is all organized. I am very much the organizing freak, so if I know what kind of outing we will go to I will open the certain part of her closet and she gets to pick from those. She does a good job!
CM: What are your favorite clothing brands for kids?
Of course Ooh La La! Couture is one of her favorites! I love Ooh La la because its casual mixed with frilly. Bailey can throw on a pair of really nice Ferragamo dress shoes and have a nice outfit for church or a dinner party. Then for the park, she can put on some long socks and Skechers and she’s ready to go. Their clothes are very versatile!
I am also very old school, classy and if you see the old pictures of my daughter you will notice she wore quite a bit of Burberry. I am part European as my mother’s side is from Holland and when I was a little girl, my older brother would wear the short knickers with the long socks and saddle shoes. I really like that European classy look. Love that style!
CM: Will either you or Scott be returning to acting?
I was a stunt woman for 13-14 years and my body has taken a ‘licken. I’m also nearing the big 40 so I don’t think I will. I may take up some hosting as there have been some opportunities to do so. Scott is still active in the industry, although he isn’t on television. He still creates shows and produces, so basically behind the scenes.
For more information on the Bailey Baio Foundation, to purchase the special edition Ooh! La, La! Couture Dresses and/or tickets to Scott’s birthday party, please visit BaileyBaioFoundation.com. You can also follow Scott Baio on his Twitter page for personal updates.