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Owen's Story   — Rebecca Nickel, NJ, USA

Our son Owen was born at 24 weeks when I developed severe preeclampsia/HELLP syndrome. He was only 1 lb, 5 oz. I had not reached the point in my pregnancy when my OB would normally test for GBS. Owen didn't show any symptoms of GBS until his 4th week in the NICU. Immediately upon coming to see him that day, I noticed he looked strange. His eyes were very wide and open and he looked quite pale. As a premature baby, he normally was sleeping and had his eyes closed. It was rare to see them open and never like this. I alerted a nurse and soon he was surrounded by doctors and nurses and I was ushered out in tears. My husband was coming home from a short trip so I had to deal with the initial scare on my own. Thank goodness for a kind nurse who sat with me in the hall and allowed me to use an office phone to call some family. My husband arrived a couple hours later and we tried our best to hold it together. After several days, they were able to stabilize Owen and treat him for the GBS once they figured out what it was. Initially they gave him broad-spectrum antibiotics until they could identify the infection. Unfortunately, he developed meningitis, too. Doctors tried to warn us to be prepared for the effects of the infection/meningitis including the possibility that he might not recover. We refused to think of this and decided we would cross that bridge when we came to it. The nurses checked his head circumference periodically to be sure there was no swelling. However, it was supposed to grow a bit as he grew larger and it wasn't doing that because of damage to his brain. No one mentioned that there hadn't been any growth and we didn't think to ask about that. Owen also had a strange swelling in his finger and jerky movements that he never had before. Three weeks after the initial onset of infection, he began having seizures. They stabilized these with medication, but it just wasn't enough and his respiratory function was severely compromised. A neurologist examined our little boy and told us that the meningitis had caused sections of his brain to die. Basically the signals in his brain were going haywire and he would not recover. We were heartbroken, but we knew this was no life for him. We wanted to take his pain and suffering away, so we made the decision to take him off the respirator and he died in my arms 53 days after we first set eyes on him. Owen had developed late-onset GBS but we aren't quite sure where he got it. The doctors inferred that it could have come from me but it was unclear. We are not sure if it was something that was lying in wait in his body or if it was transmitted by someone at the hospital or us or family who came to visit. Everyone was required to wash their hands before touching him, but germs seem to lurk everywhere...under nails, on surfaces, etc. We try not to agonize too much over how he got it because it could easily drive us crazy. God decided to take him home a lot earlier than we would have ever expected and that was the plan for him. We miss him so much and are thankful to have had him in our life for a time. His short time with us has made us appreciate his little brother, Samuel that much more. Sam arrived 1 year after Owen's death with no complications.

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