CBB Exclusive: Scott and Renee Baio open up about Bailey’s health scare, Part 1
When Scott and Renee Baio welcomed daughter Bailey DeLuca last November, to the outside world their lives seemed idyllic. Scott, whose notorious fear of commitment was fodder for the reality television shows Scott Baio is 45 … and Single and Scott Baio is 46 … and Pregnant, was poised to embrace first-time fatherhood and a life with Renee, his then-fiancée. But when the phone rang the day after Bailey came home from the hospital, it was the couple’s pediatrician on the other line bearing news that no new parent wants to hear. They would eventually learn that Bailey’s expanded newborn screening (ENBS) test had returned a positive result for a rare and potentially deadly metabolic disorder known as glutaric acidemia type 1 (GA-1).
Click ‘continue reading’ to hear more about Bailey’s story, how the Baios handled the news and the day they learned their daughter was healthy.
For more than two months, Renee and Scott lived in limbo, not knowing if their little girl was healthy or ill. Then, at 10-weeks of age and after a series of painful and involved tests, Bailey was given the all-clear: She does not have GA-1. But the experience stayed with the Baios. While other couples might be tempted to close that chapter of their lives forever and move on with their healthy baby girl, now 7-months-old, Renee and Scott have chosen to tell their story exclusively to CBB. By doing so, the couple hope to raise awareness of the need for ENBS — and the series of disorders the test is designed to detect.
While Bailey was still in the hospital, she underwent the ENBS. A simple test, the ENBS takes the form of a ‘heel stick.’ Because she was born in the state of California, the expanded version of the newborn screening was mandated by law, but the majority of states in the United States do not require the in-depth version of the test. Said Renee,
There are 17 states that require by law the extended NBS, and thank God California is one of them, because they flagged us down immediately.
When the pediatrician called the day after Bailey was discharged and directed Renee and Scott to return to the hospital for additional blood tests, Renee says she could "hear it in her voice" that something was wrong. Bailey, who was born five weeks premature, had seen her birth weight of 5 lb 12 oz drop down to 5 lb 2 oz and had begun to develop jaundice. The testing that needed to be done in conjunction with the jaundice treatment was traumatic — for all involved. Recalled Renee,
They tried to draw blood from her forearm, but they couldn’t get the needles in her arm, so they did a heel stick, but they needed four vials of blood. When she was about 6-days-old, they also did a urine strain on her. And this was going on while she was under the bilirubin light. She’d been poked in both arms, both heels, the bilirubin light…That was her life for a good two or three days.
Through it all, the Baios were told little by medical officials about the need for all the additional testing. A positive result on the ENBS immediately triggers a response from the state, for health officials are obligated to ensure that parents are following-up with proper care and treatment for a potentially affected baby. When a state worker called the Baios to see about that follow-up, Renee "played dumb" on the phone and got the worker to inadvertently reveal the reason for all the tests: It was the answer the couple had been dreading — Bailey’s ENBS tested positive for GA-1. Said Renee,
We knew that it was the worst, of all the metabolic diseases, that this was the worst. We knew at that moment: This was serious.
An organic acid disorder in 1 in every 40,000 babies, GA-1 occurs when an enzyme called glutaryl-CoA dehydrogenase is either missing or not working properly. GA-1 causes episodes of severe illness called ‘metabolic crises’ which, if not anticipated and properly treated, can lead to seizures, swelling of the brain, coma and even death. Because Bailey’s urine test came back negative for the disorder but her blood tests continued to show positive results, the couple was instructed to have their 12-day-old daughter undergo an exceedingly painful 7-layer tissue test at the Children’s Hospital at UCLA. Then, the hardest part of all — waiting. The test is a complicated one, and results often take 2 ½ months or more. Recalled Scott,
It was the worst time in my life. I don’t know how to explain that to you. I don’t, other than, every breath that you take, every thought that you have, every moment that you’re conscious, it’s all you’re thinking about. No matter what the conversation is about, what movie you’re watching, what you’re eating…This disease is the constant thought in your brain. It never leaves you. Ever. You can’t breathe.
Added Renee,
Every time [Scott] would see a child, see a baby, he would just break down. He’s a first-time father. He didn’t grow up with younger siblings. And it would just break him down…break us down. It was so tough to go through the holidays, our wedding…all the while knowing, our kid may die.
The couple finally got the call they’d been hoping for when Bailey was 10-weeks-old. Scott said he was "trembling" as he watched Renee listen to the voice mail from UCLA, and as his wife dropped to her knees he vividly recalls thinking "please God, please don’t let this be happening." But the news was good: Their daughter was in perfect health. Said Scott,
We jumped through the ceiling, even though we were just so physically and mentally and emotionally exhausted by that point. We called everybody we knew.
On Monday we’ll bring you part 2 of our exclusive interview with the Baios. Check back to read about how Bailey’s health scare has changed their outlook on life, how they’d like to help families dealing with a GA-1 diagnosis and about their efforts to raise awareness of the need for ENBS.
Photos for use on CBB courtesy Renee Baio, not for use elsewhere without express permission.
In the top photo, Bailey is wearing a pink daisy cap from Simply faBOWlous ($22).
- Posted on Jun 13, 08 at 8:00AM
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- 44 Comments
June 13th, 2008 at 8:22 am
I work in the lab that runs all these tests in the state of Minnesota and am a HUGE fan of NBS. One $35 test could save your baby’s life, why wouldn’t you do that? There are skeptics out there, but trust me when I tell you, it is worth it. Even if your child does have a metabolic disorder, with alot of them, if you catch them right away, there is treatment available, maybe not a cure, but certainly a way to prolong their life. Am happy that they are going public with their scare even though it turned out the baby was ok. Awareness is a good thing and when a celebrity gets behind something, it seems to push it all the more.
June 13th, 2008 at 9:33 am
I am happy that their ordeal is over. They were fortunate to be at UCLA and it is great that they are raising awareness of this condition. She is an adorable baby.
June 13th, 2008 at 9:58 am
Wow! My son Ryder was also born 5 weeks premature and they did his newborn screening 2 weeks later than they should have. His newborn screening came back abnormal for a different metabolic disorder called galactosemia which has a 75% mortality rate in the first week of life and is also rare 1 in 60,00-80,000. It causes brain damage, cataracts and long term disabilities such as developmental and speech. They redid his newborn screening and it again came back abnormal. They did a blood test for genetic testing and he is 2 and a half months old now and we still don’t have a final diagnosis!!! I am glad that Bailey’s tests all came back okay and that they were able to get answers quickly, here we are still waiting!!! My son will be 10 weeks on mon. june 16th.
June 13th, 2008 at 10:17 am
This makes me glad that I’ll be delivering our child in California!!!
June 13th, 2008 at 10:54 am
heather – it’s actually better to wait a bit to do the nbs because it gives time for the illnesses to show after feedings. if they are done within the first 24 hours – the tests tend to not show abnormalities because the newborn hasn’t eaten or processed much food yet.
ps – hope ryder turns out just fine!
June 13th, 2008 at 10:55 am
does anyone know which states offer the extended tests?
June 13th, 2008 at 11:40 am
Glad everything worked out well for them, their a cute family and bailey is beautiful.
June 13th, 2008 at 11:41 am
That baby is adorable. What cheeks! She looks so healthy. Thank goodness she is. Very beautiful family. I love that Renee sends updates and photos.
June 13th, 2008 at 11:42 am
I am so glad that Bailey is healthy and fine. I went through my entire pregnancy just fine and in the last 6 weeks I had an ultrasound that showed that our baby had a big head and could possibly have craniosynthosis. I can’t describe to you the feelings that took over. It can’t even be detected on ultrasound, but the tech that did the ultrasound didn’t get the measurements quite right and we were given news that rocked our world. He is 8 months old now, healthy and completely fine, but I still look at his head and wonder what “if”. What if they missed something..what if it doesn’t show up until later. It never goes away. Today Matthew is healthy and fine and I am grateful. I also hate that tech. He got it wrong, and it has nearly ruined my existence.
June 13th, 2008 at 11:50 am
I am so thankful that little Bailey will be OK. What a wonderful thing Scott and Renee are doing to raise awareness for this disorder. Until I read this story, I had no idea this disease even existed. Kudos to the Baio’s for going public with such a private matter, in the hopes of helping other families.
June 13th, 2008 at 12:05 pm
Heather –
My nieces both got abnormal results on their NB screens for galoctosemia – I know that it can be very scary. They both underwent extensive additional genetic tests and in both of their casse, it turned they were carriers for a benign variant of the disorder called Duarte’s Galactosemia. I hope your baby’s tests turn out ok too!
June 13th, 2008 at 12:10 pm
Meghan, they did the test when he was 2 weeks old and they were required to do it when he was 7 days old since he was a preemie,(at least those are the state Health regulations here in Virginia.) he was breastfed for 6 weeks before I was told that it could give him brain damage. he is doing fine but we are praying that no damage was done.
June 13th, 2008 at 12:15 pm
IG, if he does end up having it we are hoping that he is a carrier or that it’s Duarte’s which means he has some of the liver enzyme needed and won’t have to be on a complete restricted diet for the rest of his life. Thanks for the well wishes!
June 13th, 2008 at 12:50 pm
Heather –
Wishing you all the best!
June 13th, 2008 at 1:39 pm
What Scott and Renee are doing to benefit other families and raise awareness of GA-1 is simply wonderful. Thank you so much to the Baio family!
June 13th, 2008 at 2:00 pm
I’m glad their daughter is healthy & I’m glad they are telling their story to raise awareness. But is it just me or does it seem weird that they had to “play dumb” to get medical info? Shouldn’t that info be forth coming from your health care provider?
June 13th, 2008 at 2:37 pm
whoooa. so much they had to endure with this pregnancy- first renee lost the other twin, then this-so stressful. glad to hear that she’s happy and healthy now though.
June 13th, 2008 at 2:40 pm
I AM GLAD TO HEAR THAT BAILEY IS OKAY. MY DAUGHTER HAS A METABOILC DISORDER CALLED MCAD. IF YOU ARE UNFAMILIAR WITH THIS YOU SHOULD LOOK IT UP AS WELL. IT IS MOSLY HARD TO DEAL WITH WHEN SHE IS SICK. IT IS A LOT OF HARD WORK TO MAKE SURE THAT SHE IS EATTING ALL TH RIGHT STUFF AND NOT TAKING IN A LOT OF FAT. THE BAIO FAMILY IS VERY LUCKY TO BE SPARED ALL OF THE HARD WORK THAT COMES ALONG WITH ONE OF THESE METABOLIC DISORDERS. I TELL EVERYONE I KNOW WHO IS PREGNANT ABOUT ENBS AND I HAVE EVEN THREATENED A FEW FAMILY MEMBERS IF THEY DO NOT HAVE IT DONE. LOL!! IT IS VERY IMPORTANT TO HAVE THE TESTS DONE AND COULD SAVE YOUR CHILDS LIFE. ENBS IS SOMETHING I FEEL VERY STRONGLY ABOUT BECAUSE MY REBEKAH PROBABLY WOULD HAVE NOT MADE IT PAST FOUR MONTHS WITHOUT THE TEST.
June 13th, 2008 at 2:40 pm
Congratulations Scott and Renee on a negative result! In 2003 my son was born in San Diego, CA and at the time they did not have ENBS. We took him to his his regular checkups and the pediatrician could not find anything wrong because he had only gained 6 oz from 6 months old the a year.We found out in June 2005 in Tucson, AZ that he did have GA-1 and there was only slight brain damage. I am so happy now that the ENBS is mandatory so that other families do not have to go through what my son has gone through. So again, congratulations!
June 13th, 2008 at 2:42 pm
While reading this article it was like reading the story of my daughter, Isabella’s, life — except sadly we did not get an all clear. We brought our baby girl home, without a care in the world, we had this amazing, beautiful, healthy baby in our arms. Little did we know the very next day we would receive a call from the state telling us her newborn screening came back abnormal. After months of blood, urine, and skin biopsy tests we learned the news, she had 3MCC. I had no idea this even existed, that it was even possible as we have no documented family history. I didn’t even truly understand the testing administered in the hospital to all newborns. When we received the news it felt as if it was the worst news in the world, we now know it was the luckiest day of Isabella’s life. To have information and treatment given nearly from birth was a gift of life for our baby girl.
I want to thank the Baio’s for spreading the word and bringing awareness to this little known issue. It is a wonderful act to help educate people and speak out for such a worthy cause even after finding out your child was not affected. I want to thank you from the bottom of my heart!
Beth
June 13th, 2008 at 2:47 pm
In the last few years there have been several families in my state of Nebraska who have refused all newborn testing. I believe the state brought charges of child endangerment against them because it is the law to have the tests. They counter sued for violation of personal freedoms. They said it was for religious reasons.
I personally cannot understand not wanting to have the tests done, though I am not saying they were wrong. I don’t want to enter into a religious belief argument.
The heal prick is soon forgotten and the benefit of treating a potentially fatal disease early would seem to outweigh the temporary pain. My middle child had jaundice really bad as a newborn and had daily heel pricks for the first three weeks of his life. I think he handled it better than I did and actually started sleeping through them.
June 13th, 2008 at 2:54 pm
I posted earlier asking if anyone knew which states offered the expanded tests and no one has replied yet. In the mean time I found a website that lists what every State tests for in their Newborn Screening Tests, if you go to http://www.jessutopia.com I have the link on there. Thanks.
June 13th, 2008 at 3:48 pm
I’m so happy she is OK, I don’t have any children so I can only imagine what a parent must go through a time like that. Good luck and best wishes to all of you out there going through that process, I hope your babies turn out just fine!
June 13th, 2008 at 6:04 pm
My niece did not have ENBS. She has GA-1. She was progressing normally, but at 7 months, her metabolic crisis left her totally disabled. She and her parents live in Australia. She is 4 years old now, and cannot walk, speak or drink on her own. She is trying so very hard to do all those things. She is normal intelligence, or perhaps higher.
I will never forget her metabolic doctor telling me, her devastated auntie, that he did agree with expanded new born testing, because some parents have to go through what the Baio’s did, only to find it was a false positive.
Our family would give anything to have had the chance to test my niece and save her from her crushing disability. Baio’s outcome is wonderful, and I am very happy for them and their beautiful baby. I am grateful to hear they want to help others.
These are tests are so important, these tests save babies.
June 13th, 2008 at 8:07 pm
So does anyone know what would cause Bailey’s blood tests to come out positive a bunch of times?
June 13th, 2008 at 9:11 pm
I think it’s ridiculous that not ALL states have these kinds of tests. PA to my knowledge does not have a mandatory ENBS but just the standard one. Our daughter has a genetic disease that could have been fatal if it weren’t for the tests. I completely relate to the Baio’s and their struggle with waiting. I am happy their daughter got the “all clear”
June 13th, 2008 at 9:23 pm
I HAVE A SON WITH GA1 (Glutaric Acidemia Type 1)
I am very glad to hear that Bailey is fine…. I also hope that Scott and Renee will continue to raise awareness.
No one has heard of this horrible disease (until it affects someone you know.)
I cried when I read this because here is this celebrity describing how you can’t look at another child at first without crying…and Renee falling to her knees – I did and went thru all this without the happy results.
My son has had strokes, he has severe damage…he doesnt sit, walk, talk or eat by mouth…and I have been told by all the drs involved in his care that he has one of the most severe cases they have seen in many years.
One thing I can say though is he smiles and laughs…he is the happiest little 3 year old you can imagine.
The docs told me he was dying last year – they gave him 6 months to live, which expired in March…he barely made it to his third birthday and now it is almost time for his 4th.
I am so proud of my strong little fighter. I just wanted to share!
June 14th, 2008 at 12:14 am
In regard to the newborn screening states, and who does the mandated screening (up to around 42 conditions checked for with one blood sample) you can find great info at the Save Babies Through Screening website (http://www.savebabies.org/index.php). There you can read about many other disorders that affect multiple children all over the U.S.
The good news is, now that ENBS is starting to be “picked up” by different states, more children are being diagnosed at birth. There is the possibility of a negative diagnosis, due to the fact that there are so many different scales on which a child’s blood or potential urine can read. Scientifically, I wouldn’t know how to explain it because I don’t know well enough how it is gauged. However, the wonderful thing is, that those babies caught at birth, do avoid disability, potential death, and are given much better care by the Doctor who knows enough and can provide preventative care for the child.
President Bush did sign a new bill, the Newborn Screening Saves Lives Act, in April, and this will help ENBS exceptionally. You can find more about it at:
http://www.galists.org/read/messages?id=175477
Thanks again Renee’ and Scott. This is a wonderful push to our efforts in ENBS.
June 14th, 2008 at 12:17 am
Oh, Wanda, thank you for sharing. I know that your son is just beautiful. Your story made me cry, you have such a great attitude. Your son is meant to be here, thank god. Heather and all the other posts on here that have a child with a disorder. I wish all the best to each and every one of you. You are all very brave women and you have very brave children.
Renee, thank you for sharing.
June 14th, 2008 at 2:06 am
Heather I work in an NICU and we do what we call “PKU’s” which is the newborn screens, at the 3rd and 14th days of life…but if they have had a blood transfusion we have to wait a week after to do it. Maybe there is a reason they waited…that’s only how our NICU does it. We do get many false positives…Wishing you the best!
June 14th, 2008 at 7:08 pm
Thank you Renee and Scott for helping to raise awareness regarding expanded newborn screening. Newborn screening saves lives and hopefully we will see the time come when no child dies or becomes impaired due to lack of early detection. Please visit our site for information on newborn screening. http://www.savebabies.org We are the only organization in the country solely dedicated to newborn screening. We have many programs for families such as our Packets for Parents program which offers supplemental screening to families who cannot afford it–no charge. If anyone would like more information about our organization please feel free to contact me. We are always looking for advocates to join us in carrying out our mission–healthy babies!!
Jill Levy-Fisch
President
Save Babies Through Screening Foundation
http://www.savebabies.org
jill@savebabies.org
914 588 1127 ph.
June 16th, 2008 at 2:17 pm
Thank you so much for bringing awareness to Ga 1 my daughter had some new born testing and I guess it came out borderline and nothing was ever done and I never knew untill after she had been admitted to the hospital for failure to thrive you can find more on her story at http://www.makeachildsmile.com she was featured in May 2008
June 17th, 2008 at 4:44 pm
I am so happy to see efforts to raise awareness of the importance of ENBS. We lost our newborn son when he was 2 days old from MCAD. If we had only known, it would have been simple to treat him and he could have lived a normal life. Thank you for helping to raise awareness and save lives.
June 17th, 2008 at 9:46 pm
Bailey is a beautiful little girl………so cute!!! I am so happy that she is healthy. I am having my first little boy in 2 months, and happy to be delivering in California.
June 18th, 2008 at 12:25 am
Praise God that their baby is healthy! God Bless all of you!
June 18th, 2008 at 8:52 am
I checked some sites but they NEVER said what states does this test on babies. I wished there was a list to see.
With everyones help , we all can have this test in every state / cities.
June 19th, 2008 at 12:00 pm
I was a big fan of the show and I am so glad everything turned out o.k in the end. I cant emagine what you guys went through but thank god there is a god and god bless all three of you. Leo
June 19th, 2008 at 10:20 pm
I am so happy for them! I had my child seven weeks early and I know the feeling of dread that something awful would happen to him or that my child had a disorder that would go unnoticed. So far he has amazed me with his progress and I can only hope for the best for them as well.
June 20th, 2008 at 12:53 pm
Heather,
If you’re still reading the comments — we went through the same thing with a galactosemia result with our daughter. At 5 days old, the pediatrician’s office called and said to stop breastfeeding immediately and bring her in for more testing. We had to go back for multiple testing, blood and urine, and it took forever to get results. No one seemed to have much information on it either, even though we live only a few miles from Emory Genetics which is conducting one if not the only research study on the condition. We finally got the DG diagnosis at 3 months, a big relief after all that waiting. I pumped for 4 months and they let me use half formula half breast milk. We did the milk challenge at 1 year and thankfully everything’s fine now. It’s a difficult situation, to be sure. Hang in there.
June 20th, 2008 at 6:08 pm
Renee & Scott i am so happy everything turned out great for you both and your little girl … My son was tested for the same disease … Thank God his test showed a false positive as well …My husband and i could relate to how you both felt when going through “the madness” .. but it does put everything in it’s proper perspective ….
Susan & Steven Morgenthaler
June 21st, 2008 at 1:54 am
Scott & Renee –
I am SO GLAD to hear that your sweet little Bailey is well! Our son was born with a metabolic disorder called PKU (Phenylketonuria). It was detected here in CA by NBS in 1995, and he was officially diagnosed at 1 week of age. We are very thankful that CA screens newborns for these disorders and subsequently saves so many lives! I commend your determination to bring national awareness to the importance of NBS. It is a topic we parents of children with PKU regularly discuss, and our voices and attempts to raise awareness often feel like futile efforts. It is also important to go one step further and realize that the need for nationally mandated ENBS, important as it is in saving lives, goes hand-in-hand with the need for nationally mandated coverage of treatment for children AND adults who suffer from these disorders as well. Even in states where ENBS is practiced, insurance companies are not necessarily required to provide coverage for the treatment of these disorders – leading to GREAT financial burden on adults & families who do not qualify for state-assisted medical care or whose insurance companies do not cover their care. And this can inevitably lead to unnecessary deteriorating health & death for the afflicted individual – which is what we try to avoid in the first place by mandating national ENBS. Scott & Renee, please keep the public informed on your efforts. I have a feeling there will be many supporters who will jump on the bandwagon with you to make this nation aware of this need!
August 8th, 2008 at 11:26 pm
I have a son who was diagnosed with Malonic aciduria. He is the 18th case world wide. Our blood and urine tests both came back positive. After hearing about Scott & Renee’s ordeal I have been given hope that maybe our skin biopsy will also come back negative. If there is anyone reading this who has any information or knows of someone who is affected by this condition … I would be greatful if you could respond to this comment. Thank you Scott and Renee for going public and best of luck with your beautiful healthy baby.
August 22nd, 2008 at 11:07 am
Dear Scott and Renee,
I am so glad to hear that you two and your beautiful baby girl are doing well. I wish you all the happiness in the world!!
September 22nd, 2008 at 11:47 am
I am sooo gladdd you three are fine. I am a Mom of four and a Grammy of three and as I told my Son recently, “Your Baby Girl will soften your heart”. She is three months old and he is showing to be a great Dad even though he did not think he would be before she was born. Scott, I knew that your Wife and Daughter would change your life for the better. See even Grammy’s liked your show and are very proud of you. Don’t forget to always stop and smell the roses, because life is so short. So glad you found your beautiful Wife!!