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 9:00 AM
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