Charlie's story   — Jana Anthoine, GA, USA

Our son Charlie was born on May 21, 2003 and was healthy even though he was 4 weeks early. He did have to stay under the bililights for jaundice for 2 extra days, but all was well after that. He was eating well, sleeping great, peeing and pooping and crying like he should.

On Tuesday, June 10, he became very fussy and inconsolably crying. He ate at the 2 morning feedings but didn't eat at 1pm. I called the doctor because I thought maybe he had gas (was all pulled up) or something. We went in and he didn't have a fever or anything. The complete blood count (CBC) showed no infection and all numbers looked right. When we got to the doctor's office, he became very quiet and listless...like he just didn't feel well. We thought he probably had a bug of some sort because my husband had been sick the weekend before. He said he would like for him to eat, but if he didn't he wouldn't starve without a few meals. Doctor said to call him in the morning and let him know how he was doing.

Over the afternoon, Charlie was very quiet and sedated. He seemed asleep the whole time and was very hard to wake. I tried to feed him and he wouldn't eat at all. Around bedtime we decided to keep an eye on him and let him sleep in the bed with us. My husband and I kept a hand on him all night long and kept checking on him.

First thing in the morning, we called the doctor and went in immediately. He had paperwork ready to send us to the hospital. We were checked in to the PICU and immediately they put him on a breathing machine, antibiotics (for whatever it could be), anti-seizure medications (just in case), inserted a catheter and gave him fluids. When they finally let us know that he was stable and let us see him, they said he was not really breathing at all when he came in. They ran numerous tests...ultrasounds, ct scans, blood cultures, etc. They had to start giving him plasma to bulk up his blood so they could do a spinal tap. He was having seizures even though he had lots of medications to stop them.

It was about 24 hours before the doctor mentioned GBS. I knew I was negative for GBS (tested 1 week before I delivered)* and he was negative in 3 different CBC's after he was born. And at that point, he said Charlie had already had many strokes in his brain and had severe sepsis and meningitis. He said that I probably did not have GBS and that he could have picked it up somewhere else. I don't know what to think. They still had to do the spinal tap to confirm what he thought...that GBS had invaded his little body and was killing his little brain. An MRI confirmed that his brain was nearly completely destroyed and he wasn't breathing on his own.

We had to make the most unthinkable decision that parents will ever have to make. He couldn't survive on his own so we had to just turn off the machines and hold him and kiss him and touch him and sing to him and love him until God took him to be with the angels (and his sibling that we lost to miscarriage 1 year ago). They were the saddest, most beautiful minutes of our lives.

In hindsight, after seeing the Jesse Cause brochure, I realize I probably should have had antibiotics during labor. I presented several of the risk factors...meconium staining, labor at 36 weeks, water broke about 16 hours before he was born, internal monitoring, low fever.

I do now know that 50% of the cases of late-onset come from the mother, 50% come from elsewhere in the environment. We do not know how Charlie contracted GBS, but want others to be aware of what it is and how it can help be prevented.

*Note: GBS is transient so a woman's GBS status may change by the time she goes into labor.