Thursday, September 1, 2011

Hydrocephalus...What This Has To Do With Me

Well, as you may or may not already know, my twins were born 10 weeks early (30 wks., 2 days).  They had a rough start, and one day I'll get into that further.  (Today is not that day.)

Because of their size and gestation when they were born, the kids were signed up to attend the "Developmental Follow-Up Clinic" at the hospital where they were born.  They went every 4 months at first, just to make sure things were moving forward...that their development didn't fall too far behind their peers.  (We always knew they'd be somewhat behind for the simple fact that they were born 2 1/2 months early.  The developmental follow-ups were to make sure that if they failed to progress, we could get some early intervention to help them out.)

From the time my son was born, he had a big head.  Even at 3 lbs., 14 oz., his head was 32 cms.  (12.5 inches), which was only 3 cms smaller than my last daughter who was born 3 days past her due date.  From the start, his head was always above the 90% percentile.

Over the course of the first year, his head was always a growing concern (no pun intended).  It got to the point that it was in the 96% percentile, growing much faster than anyone liked.  The pediatrician at the follow-up clinic had us take him in for an ultrasound of his brain (they did it through the soft spot on the top of his head).  There was excess water there.

I want to mention that at the time, the man who did the ultrasound on his head told us that he'd seen tons of children come in with excess water on the brain, and that it ended up being reabsorbed over time, never resulting in anything except a large head.

I didn't care what he said.  Honestly, IMO, an ultrasound tech isn't the person I want telling me that my baby boy is okay.  I wanted to hear it from someone with some letters behind their the pediatrician.  But she didn't.  She sent us to a pediatric neurosurgeon.  The appointment was scheduled for two months later.  It was the longest two months of my life, next to the two months the twins spent in the NICU. 

Everyday I would kiss my son's head over and over and over.  (A mother's kiss is healing...right?  "Please let these kisses heal him...please, please...please the them heal him...")

For two months all I could think of was what would happen if he was diagnosed with Hydrocephalus.  I'd never even heard the word before, and believe me, Google doesn't give you a really hopeful idea of what can happen.  I joined some support groups on Facebook, telling them that I didn't know if my son had it, but it seemed like everyone important thought he did...

I met a man named Perry.  He may or may not end up telling his story here.  He had it since he was small, and has been through it himself.  He told me what I needed to hear.  My son would swim, he would play, he could do whatever any other child could do, even with a shunt.  The only things he may not be able to do would be contact sports like football (and I mean real football, not soccer.  LOL).  He gave me hope when I needed it, and I'll forever be thankful for that.  His words didn't make everything better, but gave me enough hope not to lose my mind while we waited to see the surgeon.

At the assessment, the neurosurgeon looked him over, had him walk, and said that from what she saw from the ultrasound pictures, it could be something that goes away...or not.  Only time would tell, and she wasn't going to put in a shunt just yet.  She wanted to see what happened, and scheduled another appointment four months later.

Well, I'll tell you.  My brains don't work like they used to.  Being alone with twins 12-14 hours a day can get to me...make me forget anything other than what is happening that moment, right in front of me.  I lost the card that had the appt written on it, and no one called me to remind me of the date.  So we missed it.  When I found the card, it was about a week after the appt. was scheduled, and we had to rebook.  Great.  Another two months of waiting.  All this time, I had still been holding him and kissing his head over and over, every single day, praying and wishing and hoping that my kiss would be enough to help him.

Finally the day of the appointment.  I was so scared I couldn't eat, couldn't think straight...I just felt sick from worry.  We got there early, and waited in the room for about 40 mins before the neurologist finally showed up.  (She'd been in emergency surgery.)  He spent all that time just running around the entire wing of the hospital...being crazy (as usual)!

She watched our son walk to the toys.  Pick them up.  Turn around and run back to us.  She heard him talk, and she saw him smile.  She picked him up and put him on her lap and looked at his eyes.  She put him down and looked at us and said the words that I'll never forget.  "He's fine."

She explained to us that because he was clearly developing...moving forward in speech and movement, he was able to bend over, pick up a toy, and bring it to us...he was okay.  Children with Hydrocephalus stop developing without a shunt.  She said that his eyes looked perfect, that he was just as crazy and active as any other child.  She measured his head again...still in the 96th percentile.  Then she measured my husband's head.  Same.  LOL  My husband was also in the 96th percentile!  His big head wasn't from Hydrocephalus, it was genetic...passed down from Daddy!

The entire thing put it all into perspective for me.  There are brain disorders that are just not known about by the general public.  Sometimes someone can look totally normal and have something going on inside of their bodies or their brains that we can't see from the outside.  And the lack of education about Hydrocephalus is just upsetting to me.  It's something we need to talk about.  Something we need to find a cure for. 

Although my son was not diagnosed with Hydrocephalus, everyday others are.  I'm sure there are people in my community (and yours) that have it and no one even knows, because the shunt is inside of their body, you can't see it and identify it.  So, as a thank you to Perry, I am going to start a Hydrocephalus Support Group in my city as soon as my twins start school next year.  I will find them a place to meet, get things going, and leave them to it.  I am a fantastic planner.  It's what I do.  And I think that no matter what you're going through, it's easier when you know you're not alone.  I don't feel like I should be at their meetings, because my story is not like theirs.  But I know the fear that they faced when they were given a diagnosis.  It's the fear any mother would have when she's told that there is something wrong with their child.  I can't fix things for everyone, but I can help them find other people who can relate.  No one should have to face Hydrocephalus alone.

So there it is.  That's my story about Hydrocephalus.

Donations for research can be made here:  GUARDIANS OF HYDROCEPHALUS RESEARCH FOUNDATION


I am in the process of figuring out where meetings could be held if I am able to find people interested in joining a support group.
My twins started school yesterday, and this has been on my mind, again, for the last two weeks.

As it progresses, I will post about what's going on.  : )

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