Jenna
This is a personal story shared by a family who lost a child to Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCADD).
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At nine months of age Jenna seemed the picture of health, until one morning in November 2002 when Jenna woke up very lethargic. I hoped Jenna wasn't coming down with the flu that had made my son Justin ill the week before. Later that day, for reassurance I took Jenna to the pediatrician. Jenna was diagnosed with the flu. At home Jenna's condition had not changed from when she had been to the doctor's office. She was still very lethargic but she was drinking so I took that as a good sign. Later that evening Jenna's fever had broken and she seemed a bit better. Reluctantly, at around 11:00 p.m. I put her to bed. Around 4:00 a.m. Friday November 22, 2002, Jenna cried out. I bolted from the bed to check on Jenna. I changed Jenna's diaper and tried to get her drinking again, but she was resisting taking a bottle. When I finally got her to take a sip of fluids she seemed content. Awhile later Jenna started making noises as though she were going to vomit, and all I could think was that something just wasn't right. I expressed my concerns about Jenna to my husband. We decided that if Jenna wasn't any better that we would take her back to the pediatrician's office when it opened. Unfortunately, we never got that opportunity. At approximately 6:30 a.m. Jenna stopped breathing. Paramedics arrived and whisked Jenna off to the children's hospital. When we arrived at the hospital we were told the worst news any parent could hear. Jenna had died. Initially we were told that the cause of death was Reye's syndrome. Stunned by the suddenness of the situation we asked ourselves how could this have happened to our seemingly healthy child? A month after the tragedy we were advised that the cause of death was a treatable disorder called Medium Chain CoA Dehydrogenese Deficiency (MCADD). We learned that if Jenna had been screened for this disorder at birth she would most likely still be alive. Some provinces in Canada were screening newborns for MCADD when Jenna was born. But we had the misfortune of living in Ontario, where babies are not screened for MCADD. It's hard to believe that a simple blood test could have spared us a lifetime of heartache. Sincerely, Tammy Clark Mother of three: Jenna ~ Feb17/02 - Nov22/02 Kars, Ontario |
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