Saturday, September 8, 2012

September is Hydrocephalus awareness month.  It is estimated that 1 to 2 of every 1000 babies are born with Hydrocephalus.  This statistic makes it as common as Down Syndrome, yet it is a condition that is largely overlooked in terms of federal funding for research.  Shockingly, we have seen little to no improvements in the treatment and diagnosis of Hydrocephalus in the last 50 years.  This is a problem, especially when many cases of Normal Pressure Hydrocephalus occurring in older adults are misdiagnosed as dementia. 

In short, Hydrocephalus is the build-up of cerebrospinal fluid in the ventricles of the brain.  It can be congenital or acquired.  This build up of fluid causes extreme pressure on the brain, resulting in damage.  There is no cure for this condition, and the treatment, in the form of a shunt, is far from perfect.  50% of shunts will fail within the first year.  Babies who are born with or who acquire Hydrocephalus have a high risk of developing Cerebral Palsy, since they are in the fragile stages of brain development.  Adults who acquire this condition often need months of therapy just to get back to doing normal, everyday tasks.

This is our story.  Aiden & Ryan were born at 25 weeks gestation.  They both developed Grade 1 & 2 IVH’s or brain bleeds in their first week of life.  When the bleeds weren’t resolving, the doctors briefly mentioned Hydrocephalus.  Eventually, both boys had developed Grade 3 & 4 (the most severe) bleeds on both sides of their brain.  At this point their head circumference was being measured daily.  Any big jump in size would be an indicator of Hydrocephalus.

Ryan was diagnosed first.  One of his nurses noticed a 1cm jump in head circumference overnight.  As a matter of fact, you could see with your own two eyes that his head was disproportionately large for his body.  After a few consultations with the Neurosurgeon and a head ultrasound, he was officially diagnosed.  The best form of treatment is a shunt, but he was still too small for one.  He was exactly one month old when they placed a tapping reservoir into his brain.  This allowed for the doctors to drain the fluid every other day, without risking infection each time.  Ryan got tapped every other day for the next month or so, until he grew big enough for his shunt.  It’s amazing how much the pressure on his brain affected him on the days that he wasn’t tapped.  He required more oxygen and had more episodes of apnea when the fluid built up.  By the time he was ready for his shunt, we were anxious to get it done.  We just wanted him to get better.  As we expected, a few days after surgery, Ryan no longer required oxygen.  He was on the fast track home. 

Around the same time, Aiden was also being monitored for Hydrocephalus.  We thought he wouldn’t be diagnosed, but he eventually was.  For some reason this put my mind at ease for Ryan.  This may be a little warped, but my thinking was that at least they would go through this together.  I guess it’s a weird way to look at it.  Aiden got his shunt a couple weeks after Ryan.  He didn’t respond as quickly in terms of oxygen needs, but his lungs were much sicker.  His Hydrocephalus also isn’t as severe as Ryan’s, so he might not have been as affected by it.  Though we did notice a drop in his resting heart rate after the shunt was placed. 

We spent the next few weeks trying to get our boys out of the NICU.  They had a lot of struggles with learning how to eat using a bottle.  A lot of the doctors and nurses thought it was because of their condition.  As a result, they wanted to send the boys to feeding rehab for however long it took them to learn how to eat.  One doctor even suggested putting Aiden on a g-tube, because with his cleft and the Hydrocephalus, she never thought he would learn how to use a bottle.  By the time the boys were accepted into the rehab facility, they were getting the hang of bottle feeding.  And they truly surprised everyone. 

Upon discharge from the NICU, Aiden & Ryan had an MRI scan of their brain.  We had an appointment with their neurosurgeon to discuss the findings.  In short, we were told to expect some form of CP, and that Ryan would need more intervention than Aiden, because the volume loss (or damage) of his brain was much more significant.  In truth, though, no one can tell us what the future holds for our boys.  They currently receive services through Early Intervention, and our hope is that one day they will be able to live independently.  I recently read a statistic that said 60% of children with Hydrocephalus will NOT go on to live independently.  The odds are stacked against us.  But so were the odds of their survival.  And they beat that.  So who knows what will happen.

Although the boys are struggling with some significant delays at this point, our lives are pretty normal.  Our main concern is getting the services they need in order to hit their milestones.  We also have to keep an eye out for shunt malfunction.  The signs of malfunction are vomiting, irritability, sunset eyes (baby looks down all the time), abnormal head growth, lethargy, or decrease in appetite.  So you can imagine that even a simple stomach bug can be confusing to us, especially with a child that can’t speak yet.  Other than that we are a happy family.  We spend time together, laugh, cry, rejoice in the smallest of milestones.  And we do our best to raise awareness of this condition that has touched our lives. 

For more information on Hydrocephalus, please visit
To follow Aiden & Ryan’s story, please visit


Diana Pozzi said...

I beg to differ with your statement that there hasn't been any improvement in treatment in the last 50 years. There has been a lot of improvement in the shunts that are used. When I was diagnosed, in 1961, a relatively primitive shunt was used. Now there are programmable shunts, which allows for treatment with less invasive procedures. There has also been research into growing a patient's shunt from their own tissue, opening the door for a wide vareity of improvements.

With so many different causes for hydro, finding that one 'cure' that so many see as the holy grail of hydro treatment, is next to impossible. Prevention is always going to be the most ideal, which means that there needs to be more awareness of the causes, along with information of how to prevent. Fewer people know about the definition of neural tube defect or folic acid than know about hydrocephalus. Even fewer are truly aware of the risks posed by ANY head trauma/injury, including 'heading' balls in soccer & with other contact sports.

I spoke with a police capt. who was totally unaware that someone could have a brain bleed, not know it, & either acquire hydro or die in their sleep as a result. This is a potential first responder, or a supervisor of first responders! A couple of years ago we had a local sheriff's deputy who body slammed a suspect into a brick building, causing many life altering injuries, hydro among them. Virtually none of those inflicting such damage were aware of what they could do to a suspect.

I know the dangers of shunts. I've had a shunt infection, but I've also had shunts that have lasted many decades. I've also been shuntless for over 30 yrs at this point. My hydro has been arrested for most of those 30 yrs. It doesn't mean I don't have hydro, just that it isn't active right now. That could change five minutes from now, or never. I certainly don't think that shunts are bad.

What I take issue with is the idea that those of us with hydro need to be 'fixed'. We don't all end up dying early or being vegetables. Many of us are productive members of our communities.

Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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