When Henry was 12 days old, he began having seizures. We rushed him to the emergency room where he was diagnosed with bacterial meningitis. He began a 21 day IV antibiotic treatment. His seizures stopped as soon as he reached his loading dose of phenobarbital. He continued to take it for a month after leaving the hospital, and he's never had another seizure. Since he left the hospital after birth, he was treated in PICU and the pediatric floor (as opposed to NICU). While I was thankful that I got to stay with him the whole time, it left my unvaccinated, immune compromised baby exposed to many diseases. Luckily, we made it out of the hospital without catching anything else.
Henry had three spinal taps during his stay at the hospital. None of his cultures ever "grew anything". Despite this and the fact that I had tested negative to GBS just a few days before his birth, his doctors believe that his infection was caused by GBS he contracted from me at birth. One doctor estimated that 10% of negative tests are actually "false negatives". His little body had been fighting the infection for 12 days before I knew. (No matter how many times people tell me that I *couldn't* have known, I still feel the guilt of letting him suffer that long.) The nurses were astonished that he seemed to be "the happiest baby in the hospital". He had quite a fan club!
At Henry's four-month check-up, his head circumference was in the 68th percentile for children his age. At his six-month check-up, it had reached the 92nd percentile. He was immediately sent for a ultrasound of his head (where we waited for three hours and they lost us while I was nursing). Before we even made it home from the ultrasound, the doctor called to tell us to go to the emergency room to meet with a pediatric neurosurgeon. He was diagnosed with hydrocephalus and scheduled for surgery the following morning. This was a really confusing day for us as parents. It seemed like we did a lot of waiting for something that was suddenly so critical. It is also confusing to some people when I say that my son had hydrocephalus. Most people relate it to brain trauma caused by abuse. Henry's hydrocephalus was caused by scar tissue that his body produced to protect his brain from the meningitis.
We chose to do an ETV surgery over a shunt. There was only a 40% chance that an ETV would work at Henry's age, and he would never have to have another surgery. Having been a teacher, I knew that a shunt at his age would mean there was 100% chance of at least one more surgery. It was a long night. I didn't sleep at all. I just cried. Every time I held him, I worried that it was last time I ever would. Henry was much braver. He smiled excitedly as the nurse carried him off the next morning, and the anesthesiologist said that he was the only kid he had ever seen wake up happy after surgery.
Henry's neurosurgeon says that he is the poster child for ETV surgery. I wish that I could share the before and after MRIs with you. Even to a layman's eye, the difference is astounding. I cannot imagine the amount of pain he must have been at the time of his surgery (more guilt), but just three months later there was a visible improvement in the pressure his brain was under. In the last two years, his head circumference has not grown. His body and brain have just been catching up.
Because of his large head size, Henry was behind in gross motor skills. (It's tough being a bobble-head.) We began ECI physical therapy just after his surgery to work on developing his neck and core muscles. Even from that young age, it was obvious that there were no delays in his cognitive skills. (That was one of our big fears from the meningitis.) He often figured out ways to get around using his weak body. The focus he had to put into his gross motor skills meant that he put his language skills on the back burner for a time, but he made up for it by learning baby sign language.
Henry is now two and half, and still very happy...well, happy for a two-year-old. I have to laugh when the doctors review signs of hydrocephalus and "irritability" is at the top of their list. He was far less irritable then than he is now. He tested out of ECI just before his second birthday. He walks (mostly runs) and talks as much as any boy his age. His teacher says he is even a little ahead for his age, but she might just be being nice. She knows how much I worry. We had a rough road. I'm pretty sure we've gotten past it, but I'm always watching for any further signs that the effects of GBS may not be over. It's strange that something I never even knew I had could effect our lives so much.
-Amber East
Henry had three spinal taps during his stay at the hospital. None of his cultures ever "grew anything". Despite this and the fact that I had tested negative to GBS just a few days before his birth, his doctors believe that his infection was caused by GBS he contracted from me at birth. One doctor estimated that 10% of negative tests are actually "false negatives". His little body had been fighting the infection for 12 days before I knew. (No matter how many times people tell me that I *couldn't* have known, I still feel the guilt of letting him suffer that long.) The nurses were astonished that he seemed to be "the happiest baby in the hospital". He had quite a fan club!
At Henry's four-month check-up, his head circumference was in the 68th percentile for children his age. At his six-month check-up, it had reached the 92nd percentile. He was immediately sent for a ultrasound of his head (where we waited for three hours and they lost us while I was nursing). Before we even made it home from the ultrasound, the doctor called to tell us to go to the emergency room to meet with a pediatric neurosurgeon. He was diagnosed with hydrocephalus and scheduled for surgery the following morning. This was a really confusing day for us as parents. It seemed like we did a lot of waiting for something that was suddenly so critical. It is also confusing to some people when I say that my son had hydrocephalus. Most people relate it to brain trauma caused by abuse. Henry's hydrocephalus was caused by scar tissue that his body produced to protect his brain from the meningitis.
We chose to do an ETV surgery over a shunt. There was only a 40% chance that an ETV would work at Henry's age, and he would never have to have another surgery. Having been a teacher, I knew that a shunt at his age would mean there was 100% chance of at least one more surgery. It was a long night. I didn't sleep at all. I just cried. Every time I held him, I worried that it was last time I ever would. Henry was much braver. He smiled excitedly as the nurse carried him off the next morning, and the anesthesiologist said that he was the only kid he had ever seen wake up happy after surgery.
Henry's neurosurgeon says that he is the poster child for ETV surgery. I wish that I could share the before and after MRIs with you. Even to a layman's eye, the difference is astounding. I cannot imagine the amount of pain he must have been at the time of his surgery (more guilt), but just three months later there was a visible improvement in the pressure his brain was under. In the last two years, his head circumference has not grown. His body and brain have just been catching up.
Because of his large head size, Henry was behind in gross motor skills. (It's tough being a bobble-head.) We began ECI physical therapy just after his surgery to work on developing his neck and core muscles. Even from that young age, it was obvious that there were no delays in his cognitive skills. (That was one of our big fears from the meningitis.) He often figured out ways to get around using his weak body. The focus he had to put into his gross motor skills meant that he put his language skills on the back burner for a time, but he made up for it by learning baby sign language.
Henry is now two and half, and still very happy...well, happy for a two-year-old. I have to laugh when the doctors review signs of hydrocephalus and "irritability" is at the top of their list. He was far less irritable then than he is now. He tested out of ECI just before his second birthday. He walks (mostly runs) and talks as much as any boy his age. His teacher says he is even a little ahead for his age, but she might just be being nice. She knows how much I worry. We had a rough road. I'm pretty sure we've gotten past it, but I'm always watching for any further signs that the effects of GBS may not be over. It's strange that something I never even knew I had could effect our lives so much.
-Amber East
To learn more about Perinatal & GBS Misconceptions, click HERE.
To learn more about the Signs & Symptoms of Preterm Labor, click HERE.
To learn more about the Signs & Symptoms of GBS Infection, click HERE.
To learn more about Why Membranes Should NOT Be Stripped, click HERE.
To learn more about How to Help Protect Your Baby from Group B Strep (GBS), click HERE.
To learn more about the Signs & Symptoms of Preterm Labor, click HERE.
To learn more about the Signs & Symptoms of GBS Infection, click HERE.
To learn more about Why Membranes Should NOT Be Stripped, click HERE.
To learn more about How to Help Protect Your Baby from Group B Strep (GBS), click HERE.