Written by Angel Den Mom, Laura
Lucas was born on a Tuesday at 1:00 a.m Weighing 6 pounds 11 ounces, his parents were assured that this was an average weight however they were surprised that Lucas weighed 2 pounds less than their other 2 children at birth.Lucas was seen by the doctor on call due to the fact that their pediatrician did not work at the hospital where he was delivered. Lucas’ mother Kelly and her husband mentioned that they were concerned that Lucas had not opened his eyes. They were told that some babies are just sleepier than others after delivery and there was no need to be concerned. Lucas’ parents mentioned to every medical professional that came into the room that he didn’t seem like their other two children but were told that all babies are different. Lucas and Kelly went home on Wednesday to meet his very excited 8 year old sister and 6 year old brother.
The first night home was the typical sleepless night, but Kelly was very happy to be at home cuddling her newborn and seeing him adored by his older siblings. Thursday was a big day as the kids were having an open house at school. The family received a call from the hospital pediatrician at 5:00 during which he stated that the Early Newborn Screen did not come back normal and an appointment should be made with their pediatrician for further diagnostic testing. They were assured that 99% of the time it was a false positive and Kelly was given a phone number to contact if she had any questions regarding the newborn screen. Kelly again mentioned that Lucas’ eyes were still not open but was told that it wasn’t a concern. She immediately called the doctor and scheduled an appointment for the next day. When Kelly told her husband about the call, her husband immediately called the number they were given and again expressed their concerns. Half an hour later, Kelly got a call from the pediatrician stating that the situation was serious and Lucas needed to be immediately taken to the emergency room. Kelly was in a panic and called her husband who was attending the school open house with their other children. They arranged for family to watch the children thinking they would be home by the time the kids woke up.
Upon arrival at the local Children’s Hospital, Lucas and his parents were immediately taken into a room. Kelly and her husband were nervous but didn’t fully realize the gravity of the situation. Blood tests were done immediately. After a few hours had passed, Kelly was told to stop nursing Lucas as he would be given an IV. It was at that very moment they realized what they were dealing with was not a false positive. They were told by the doctor that Lucas would be transferred to another hospital about an hour away. They still didn’t quite understand how serious things were and assumed they would just drive Lucas over to the other hospital. the other hospital sent a team of medical professionals to accompany Lucas in the ambulance. They reluctantly allowed Kelly to ride in the front as they realized there was no way she was going to let them take Lucas without her. At 3 a.m. their journey to the other hospital began.
They arrived at the NICU completely overwhelmed and bleary eyed, not knowing what would happen next. All they knew was that Lucas was barely 72 hours old, and was in serious trouble. After an hour of sleep, they walked into Lucas’ room to find their precious baby with wires all over his body and needles in both arms. At 4 p.m. on Friday, the doctor told stated he believed Lucas had Cobolamin C but that it would take a month for a definitive answer. Their sleep deprived brains were completely overwhelmed as the doctor explained metabolic pathways. All Kelly heard was “could result in death if not treated”.
Lucas did not seem to making any progress. He was six days old and still had not opened his eyes. The resident was concerned regarding his progress and said it was not typical for kids with his disorder. Kelly called a friend who is a nurse who reminded her how sick Lucas was and that it might take awhile for him to feel better.Kelly’s husband interrupted the call to give her the exciting news that Lucas had opened his eyes; they were the most beautiful eyes Kelly had ever seen! On Wednesday, they were told he should be released in a week. On Thursday, they were told he could go home Saturday. They raced around trying to get his medicine and had a crash course in giving him injections.Kelly and her husband felt like first time parents when they brought Lucas home for the second time. They were incredibly nervous about giving him injections of B12 in a strip of muscle that was barely the size of their pinky, however the home health care nurse who visited for the first few weeks made them more comfortable. They also had tremendous support from friends and family.
The doctor informed them that their older children needed to be checked for Cobolamin C. They were not concerned about their older son having it,but their daughter had several issues that indicated she may be affected.The tests came back negative for both children but it was very concerning to Kelly and her husband that their daughter could have had a treatable condition that they were unaware of.California did not have comprehensive newborn screening when the older children were born.
Lucas is now 8 months old and thriving;a very sweet baby with an amazing smile. He has been in the ER a few times due to a fever but fortunately has been fine each time. Other than a few minor motor delays he is doing very well. His parents are thankful every day for the amazing medical care he receives; they feel they are fortunate to live near one of the top metabolic geneticists in the world. He sees Lucas about once a month and is incredibly pleased with his progress.
The doctor believes that Lucas will likely live a typical life because the ENBS identified that there was a metabolic problem when he was only a few days old (they had never seen results come back so quickly). They are lucky to live in a state where ENBS is mandatory and hope that someday it will be mandatory in every state whic his why they feel it is important to share their story.
- 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