Written by Angel Mom, Laura
Ben was born on May 8, 2009 .Full term, he weighed a healthy eight pounds, two ounces. Ben is the third of three boys. His older brother Will is four years old and Stevie is three. He was the largest of all his siblings at birth.The first few days after Ben’s birth came easily to his mother Rosemary. She was very self confident since she had already had two children and expected that number three would be smooth sailing. Ben’s first doctor’s appointment went very well. Rosemary left the appointment with no worries. Rosemary received a call from Ben’s pediatrician two days later that would change their lives forever.
Although some of the details were unclear, she remembers the pediatrician telling her that Ben’s newborn screen showed some abnormalities. The doctor assured her that it most likely was a false positive and told her not to worry. Rosemary immediately made an appointment with a specialist at her local children’s hospital, and took Ben in the next day for further testing. The doctor took blood and urine from Ben and explained that he was checking for a disorder called 3-methylcrotonyl-coenzyme A carboxylase deficiency (3MCC). He informed them that the test would take about two weeks to complete.
Carnitor and Biotin were prescribed for Ben while they were waiting for the results. They were advised to watch for seizures and rapid breathing, as well as excessive fussiness or feeding difficulties. Rosemary felt overwhelmed and constantly worked to convince herself that Ben could not have 3 mcc. She was sure it all had to be a mistake and worried about her ability to notice if something was wrong. Rosemary received a call from the specialist the following week. He asked how Ben was doing and she was happy to tell him that he was doing very well. It was during this call that the doctor told her that the diagnostic testing confirmed that Ben did in fact have 3 mcc. He asked her to research 3mcc on the internet and to bring any questions she had to their next appointment. Rosemary immediately began researching 3mcc. The stories she found were terrifying, and left her feeling very scared and helpless. She called Ben’s pediatrician who said she had never seen a child with 3mcc and was completely unsure as to how to proceed. The pediatrician told her that she’d have to wait to learn more information from the specialist. Rosemary’s internet search led her to BBAF, which enabled her to meet other families whose children have 3 mcc. She has been able to ask questions and gain support in learning more about Organic Acidemiasas well as caring for Ben’s special needs. Rosemary has been a great support for new families as they join the foundation. Even though Ben’s diagnosis is new, she is always ready to share and help those who are going through the same process. Ben now visits his metabolic specialist monthly for testing. His levels are fine and he eats well. Rosemary and Ben’s brothers all tested negatively for 3mcc.
Although much of the internet research shows that children with 3 mcc can begin to show signs of their disorder around six months, Ben has reached that milestone and is thriving. He is a beautiful, round (weighing almost 20 pounds) baby boy! Always with a smile on his face, he adores his big brothers and loves to be cuddled. Rosemary does her best to shield Ben and her older boys from germs to help prevent illness for Ben. Although they are now on a path she never anticipated having to walk down, she does feel very lucky. She is grateful for Ben’s newborn screening which led to his diagnosis and the opportunity to prevent complications from his disorder. She is also extremely appreciative of BBAF and the wonderful, brave families she has met. Most of all, learning of Ben’s disorder has taught her to always be thankful for the simple things in life.
- To immediately and effectively heighten awareness on the importance of comprehensive newborn screening and its availability and necessity for every newborn.
- To create, promote and facilitate legislation which will mandate comprehensive newborn screening for all fifty states.
- To raise funds through promotional activities and sales to support children and families affected with GA1 and other OA’s (organic acidemia metabolic disorders) through the creation of provisional support programs (including food, vitamin and emotional support efforts.)
Bailey Baio Angel Foundation
21781 Ventura Blvd #473
Woodland Hills, California 91364
Bailey Baio Angel Foundation
is a 501(c)(3) Non-Profit
Non-Profit Tax ID# 26-3316634