Tuesday~June 9, 2009
As the mother of a lovely little guy with hydrocephalus, I’m quickly learning that it’s hard to explain exactly how Asher’s brain shunt works without visual aids. People do ask a lot of questions, and I don’t mind that a bit. I’d especially love to help parents who are embarking on this “adventure” understand how it all works. It’s much easier to deal with something when it’s concrete in your mind and you know (mostly) what to expect.
People are often confused about what part of the contraption is actually doing the work, where the tubing goes, and whether or not all of these parts are on the inside or the outside of the body.
So first of all, for the most part, you can’t see a thing…
Of course not, Heather, he’s all covered up (and the cutest thing I’ve ever seen).
Oh, okay then. Even when he’s NOT all covered up, you still can’t really see much…
The valve itself is on your left, looking at this picture. It’s just a slight bump above his ear from this angle (It sticks out quite a bit more from the back). That valve does have a tube connected to it that goes to the middle of Asher’s brain where the ventricles are that were having trouble releasing spinal fluid. So it looks like this picture below…
I know it’s really small, but that dark line is the tubing, and the brown thing in the middle of the black line is the valve. The tubing also continues down around to the front of Asher’s neck and to his stomach. Like this…
If you go back up to the bare picture, you can see the tubing under his skin on his neck. You can’t see (very well) in that picture, how the tubing does continue down to his belly, just above and to the side of his belly button. You can see the scar there from his surgery. That’s where the tubing ends (and the spinal fluid is released into his abdomen and absorbed into his body-no, not his actual stomach, just his intestines). In his catscan, we can see all the tubing that’s coiled up inside his body, waiting for him to grow. It will stretch as he does so that there’s enough tubing. That part blows my mind, I’m not really even sure exactly where it’s all sitting. It’s a lot. I guess we have some extra space to store things in us, so in case you need to hide something, I’m sure there’s room.
So yeah, them there’s the basics.
I did answer more questions right after his surgery (will he always have to have a shunt? How often do they change it? How does this effect his development? Etc.) If you’d like more Noggin information from that post, you can click HERE.
If you are a parent (or loved one of any kind) of a child with hydrocephalus, I’d love to connect with you. Please feel free to leave a comment. Or you can email me (the address is in the sidebar).
Asher continues to do very well. He’s still not talking much, but he sure does know how to get his message across. He seems to understand everything that’s going on, what we’re saying, and follows directions with no problems. Therefore, we’re still choosing not to freak out. Most likely, he’s a little behind from before his surgery and will catch up when he’s ready. For now, when I ask him to go ahead and start talking so we can understand each other better, he just shakes his head violently and says “UH UGH.” Well, OK then. Take your time, Ash Man. Take your time…
{ 46 comments }
That is one cute Asher.
I was thinking about his noggin this morning, and then you answered my one question (that I had in my head). It's a bit freaky actually!
Oh my! That boy of yours is just simply delicious! I'm glad his noggin is getting better.
He is so adorable! and Wow you deserve a medal. You are so honest and so smart and just a wonderfully caring mother. I seriously think it's awesome! I will be praying that Asher does great as he grows with this. I know he will.
Susan
What a miracle! Thanks for explaining this.
He is just so sweet. Thanks for the tutorial! I had no idea about any of this stuff.
What a honey!
Don't stress about the not talking thing. I know loads of people whose kids didn't talk for ages, but then used complete sentences.
I'm sure Asher will continue to surprise you – in every way!
I'm always interested in the medical stuff!
He is so adorable! Glad things are going well and thanks for explaining!
I love learning about this kind of thing. Thanks for being so open with your experience.
That's pure sweetness! Thank you for sharing… interesting stuff!
Thanks for the medical lesson, I really wasn't sure what all was involved. I have a friend, Julie, who has a daughter with the same condition and a shunt. I will send her over here, so you two can connect.
Asher sure is cute!!!
I'm glad that little Angel is doing well! Hope you are doing well also…
One of my favorite boys ever has hydrocepholus. He was completely caught up by the time I met him when he was five.
Your boy is super-duper cute!
Even though you have explained this to me a couple of times, It is still really interesting to learn more about it.
P.S. Does Asher have a Farmer's Tan?
Thanks for the lesson. I learned quite a bit.
Wow, I can't imagine how difficult it must be to watch your child go through the difficulties of surgery & all. What a brave little man. :) And so cute- he looks like he'd have a lot of fun with my 18-month-old son, little Z! How old is Asher?
What an angel. Of course, I think Miles has proven that your offspring might possibly possess some opinions of their own. I'm sure Asher will talk when he wants to!
I big puffy heart modern medicine.
It totally rocks – and so does adorable Asher. (and so does Mama)
No worries about the talking thing. Both of my boys were way late getting to it, and now you couldn't bribe them with a dump truck full of Hot Wheels to stick a sock in it.
LOL, he DOES look so cute in the towel! It's good that you can't really see it…I would think that would make it seem attractive for a young one to try to mess with it…
What a cutie patootie as we say here in the south. :) Or as my best friend from college would say, "Oh, I could just eat those cheeks!"
What a gift that boy is.. his life is so precious in so many ways.
Very impressive. ;) I always have a tough time explaining all of that. :)
What a cutie!!! :)
Man do I love little boys. Good thing huh? :)
Crackin' me up that you KNEW we would have another boy. :)
My daughter was behind on her speech due to all her allergies and failure to thrive, so I stocked up on Baby Einstein Sign Language DVD's. It was great because she LOVED them and we were able to communicate really well. (We still use some signing when we're out in public and it's noisy.)
Anyway, I started to get even more worried because she got so into signing she didn't Want to talk. But you know what? One day it all clicked for her and now it's like someone put a quarter in her and she just won't hush. It's Beautiful. And it will happen for Asher too. His timing, my friend.
Thanks for the big walk through, I really enjoyed learning!
Blessings, Carolynn
Gosh, your blog is so pretty.
My little boy is two, and I can't even imagine all of that. You are one brave mama.
Hi,
I have a little girl, Annie, who also has hydrocephalus. I'd love to be able to chat with you about it sometime. She was shunted at 8 months and is now 5. She is truly our little miracle! I'd like to hear more of your story, some of the medical stuff. Our neurosurgeon told us that we'd know more about hydrocephalus than a lot of doctors! Feel free to email me any time.
Julie
juliekg@earthlink.net
WOW – poor little tyke to experience this so young!
My father had this, as an adult though, the shunt part, I still remember the tubing running down his body . . .
Linking to this through the NHBO site. Thanks for the detailed post!
Thank you for explaining, and for sharing. He is so beautiful, honey :) That last picture, with your profile picture in the sidebar? TOTAL YOU!
Cool science lesson. Thanks!
Hey! That was my science lesson comment! My friend hadn't signed off of my laptop last night. :)
That was really helpful! I love how you explain it all in easy-to-get mommy terms. Blessings to you.
Love how you explained that such that I can understand – fascinating!
Thank you for sharing….your son is simply adorable. Blessings to you all.
He's a doll. Whether he needs it or not, you should think about getting him tested. Worst case scenario – you get free services from teachers who will help him learn how to talk (again – whether he needs it or not). In my opinion ALL kids need help in learning – so nothing is really "unecessary" in the long run.
Really cute boy. Freaky diagrams. (modern medecine is so amazing!)
Sometimes second children don't talk as much as their siblings. My friend calls it "can't get a word in edgewise syndrome", so any delay there could be completely normal. If it's worrying you at all though, why not get it checked out?
What a great post, very informative. I should warn you now, I bet Libby's head is going to look microscopic to you at BlogHer. My kids already have tiny heads, but when you're used to the Noggin…wow. ;)
Thanks for the awesome lowdown. This makes it all very clear, and now I can explain it all to the kids who were asking lots of questions when they first heard about Asher.
I hope you can still blow raspberries on that tummy. I almost want to do it to my computer screen looking at that naked belly. What a super cutie.
He is such a cutie pie!
This is pretty fascinating. Isn't it amazing how life makes you an expert in certain topics you never expected to learn about at all?
He is precious. I am constantly amazed at what modern medicine can do for people. Amazed. This was really interesting to read, thank you!
Heather,
I am so glad I found your blog today. I am a hydrocephalus momma too. My 18 month old daughter, Natalie, has external hydrocephalus. Her fluid build up is on the outside the brain instead of between the ventricles. She was diagnosed at 4 months (after we almost lost her) and had a revision at 14 months. Truly my little miracle girl :) Thank you for sharing your journey.
Great explanatory post!! And he sure has one cute noggin! ;)
He is darling and I do find that explanation very helpful and fascinating–but not in a weird way.
Thank you for this. I admit that I knew very little about it. I'm grateful to understand more.
Don't feel bad about the talking thing. Our dudes didn't speak until they were almost 4 and we had speech therapy and everything. Now…I wonder if we ought to have pushed so hard.
Well, I actually found you because of a comment you made at The Big Piece of Cake. Just from the comment I felt sure you had a child with hydrocephalus. It's so great of you to share information about it. Until our youngest son was diagnosed, I really knew nothing about it. Now, I feel like another mom commented, I may know more than some doctors. I still haven't blogged about my son's situation, but I'm going to get to it one of these days. Feel free to email me (kmomisme@yahoo.com). My little guy will be two in a few months, and he is almost completely caught up with his peers! Yahoo!
Hi Heather-
I just found your blog via Google Reader's suggestions – we have some mutual friends in Luisa Perkins and Jana (Charrette, whom I lived near in Pasadena years ago in the same church congregation) – and was just glancing through it when I noticed Asher's story and it caught my attention. My son Henry was diagnosed with congenital hydrocephalus at six months old (spring 2001), and had a shunt put in then (we were living in Bangkok Thailand and they did a great job on him). We have many similar pictures as you, with the moon shaped scar behind his right ear etc. Those were crazy times and reading your blog has brought some of it back! Fast forward one year (fall 2002) we are now living in Orange County, CA where we just happened to move near Dr. Michael Muhonen who helped pioneer a surgery to "correct" what was wrong with our Henry's brain (little drain too small, spinal fluid built up = hydrocephalus) called a third ventriculostomy. I don't know if you've come across that option yet in Asher's case. Henry had the surgery at 18 months old. He has never had to go back to a shunt, and at nearly eight years old it is so far so good. He does have some right side hemiparesis but it is hardly noticeable. He started having an occasional seizure at 5 years old which was hard , but they have only come once a year or so, he is on daily medication called Keppra. They are complex partial seizures, not grand mal. He went to SDC for Kindergarten, but is now a completely normal mainstreamed second grader. You can see a bit about him on our family blog.
Anyway, I just wanted to introduce myself, and let you know you have a new reader with some common interests!
be well,
Heather Richardson
I have an Asher, too. :) I love his name. Your Asher is pretty adorable!! Just found your blog, checking it out..
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Hi Heather, just came across your post here. Our daughter had a VP shunt put in when she was 6 months old. There was lots of therapy for fine and gross motor skills, speech and physical. What seemed like a long journey looking back now is all worth it. Jordan is 8 years and in grade 3. This was the tough grade for learning and trying to find ways to help her learn. I am happy to say that with a tutor she is doing great. As a mom you know the way your child learns. Shunted kids learn differently and once you find that out it becomes easier. Jordan is really social and loves school; the one thing I will say is that Jordan has a great memory which is not often the case with shunted kids. Hang in there!
One more thing I need to say, all my blessings and the strength that we had I give all the credit to God because without him I would not be here writing this. Going through this is very stressful; you are in the dark for so long about how their future will be. This is when he comes and comforts and gives you that whisper that he will carry you. I praise his name in that storm. God bless!
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