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Erin's Story   — Tracy Stevens, PA, USA

Erin's Story It was Thanksgiving Day 2003. Erin was 6 weeks old. She woke up and ate at 3am and was fine. Then she awoke again at 6am and starting crying. Crying was something Erin did not do alot so to us it was odd. She cried for about 1/2 hour; then went back to sleep. She then awoke again but was making kind of a groaning sound and would not take her pacifier or her bottle. She was also a little pale. I thought she had gas. Around 10am I called our on-call pediatrician who said just to be safe to take her to get checked out in the ER as the ped's office wasn't open because of the holiday. She didn't like the sound she was making. I was worried she would get dehydrated. So at 11am we went into the ER and were seen. After that things started happening very quickly. They ran tests, took x-rays, etc. Our pediatrician happened to be making rounds at the hospital still and they called her down to the ER. They decided to fly Erin to Penn State Children's Hospital in Hershey, PA. We were devastated. They had done a spinal tap before we left because they suspected meningitis. We couldn't fly with Erin so we rushed there and waited what seemed like hours before we knew anything. Our whole family was there, including our pastor. It was now 4pm. It was then that we were taken into a room. Erin's doctor explained to us that she had bacterial meningitis, sepsis infection, RSV, was on a ventilator, was receiving a blood transfusion, and was possibly going to get pneumonia. Her chances did not look good. He prepared us for what we would see. We were taken into the PICU by a nurse and followed by our pastor. We decided to have Erin baptized right then. She was supposed to be baptized that Sunday in church surrounded by our family on a joyous occasion. This was not how I planned it. My husband, pastor, and I prayed. Erin was hooked up to so many things that I can't even remember them now. She had arterial lines, a vent, catheter, and IV's in every arm and leg. She was on antiobiotics as well as BP meds and others. She was lifeless. It seemed like a dream, more like a nightmare. Days passed and she started to improve. We kept vigil by her bedside with one of us always there. She was still having seizures, some brain swelling, and her EEG's were "not organized" as the doctors would say. Finally she was stable enough to get an MRI done. It showed she had 2 strokes and, as a result, some brain damage. They continued to treat her. Finally she was improving. She was off the vent at 10 days and we moved into immediate care. We had many other tests done. At one point she had a blood clot and there was talk about brain surgery, but, thank God, it was controlled by meds. We kept asking how she would be afterwards and what were the effects, but all the doctors and nurses kept telling us was, "It's a waiting game. All babies are different." She was on a feeding tube, but soon was able to feed from a bottle. We spent 18 days in the hospital and only came home with two medicines, no iv's, no feeding tubes! Erin is now 11 months old. She is receiving PT once a month and still is on phenobarbital and prilosec (for reflux). Hopefully we will get her off her meds soon after her upcoming neurology appointment. Her neurologists are absolutely amazed and can only say her recovery is a miracle. They are amazed at how she is progressing. She sat up at 7 1/2 months and crawled at 10 1/2 months. Now she is all over the place and pulling up on everything. So far she has met all her developmental milestones. We thank God for the quick decision of our pediatrician because a couple of hours would have made a HUGE difference. My wish is that other parents would be educated about the signs of such illnesses. I never knew about grunting, nor did I ever realize GBS could do something like this to a precious baby. I was GBS + , but had a planned c-section. Therefore I was not treated. We will never know exactly "where" Erin got LOGBS (late-onset GBS), but my hope is that no other babies have to go through such a horrible experience. Tracy Stevens Lancaster, PA

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