Zachary's Story   — Kim

I wanted to take a minute and share our GBS horror story.

At 34 weeks, my water broke. Because my local hospital is not equipped to handle a 34 weeker, my labor was stopped and I was transported via ambulance to Stanford hospital. I sat there for 8 days until I went into labor on my own, and had Zachary (my third child) who was 5 lb. 8 oz. I have to add that I was GBS negative (although the culture was done wrong) and so I did not receive any preventive antibiotics for 5 days before his birth. Anyway, it was immediately obvious that Zach was sick. He was in respiratory distress, which is not common in baby's at 35 weeks. he was whisked off to the NICU to rule out sepsis and treat his RDS. Within an hour we were told that our son was "the sickest baby in the hospital". He was in sepsis shock and they gave him a 15% chance of surviving through the night. His only hope was a procedure called ECMO (extra corporeal membrane oxygenation) that Stanford had only been doing for a couple of years and they only have about 25 ECMO patients each year. SCARY!!!

So, of course we poted to put him on ECMO. This involved putting two catheters into his neck — into the carotid artery and juggler vein. These vessels had to be ligated as a result, so he only has one artery perfusing blood to his brain instead of two. There were many complications. His lungs failed, then his heart and then his kidneys. It was three days before the doctors told us they thought he would survive. After 3 weeks he finally came home. He is 18 months old now and walking well. His speech is a little behind but within normal limits. He was on oxygen for 7 months and he has chronic lung problems as a result. He was recently diagnosed with moderate to severe hearing loss in one ear. There is a 50% chance that it will progress, in which case he will need hearing aids and sign language. Unfortunately, while Zach is doing well, I have a lot of anger towards the medical community. It angers me to no end that a disease that is preventable is damaging and killing thousands of babies each year. I am also angry that I was allowed to sit with ruptured membranes for 5 days prior to Zach's birth without prevented antibiotics. And lastly, I am furious that the doctor did the GBS test wrong. He only did a cervical culture, whereas a rectal/vaginal culture would have rendered more accurate results. And, the test was not repeated after 7 days like the GBSA recommends. Sorry for rambling and venting.

It is nice to find a group who knows how I feel.

— Kim