Living With: A Child with Hydrocephalus, Part One, The first surgery

in Hydrocephalus, Living With

I’m not a doctor. What you’ll read in this blog post is my opinion bases on the information as I understood it at the time in happened. When you’ve got a child with hydrocephalus your ability to process information becomes impaired by the stress the condition in children causes in their parents.  The following is only my story. It doesn’t negate anyone else’s experience. There is always be more than one way.

When my identical twin sons were born I was surprised when they weren’t quite identical. One of the boys (Bug) had kind of a lumpy head. It was larger than his twin’s head as well. But our pediatrician didn’t seem concerned so I didn’t worry too much about it. When you’ve got twins you learn to focus on the immediate. You just don’t have time to worry about anything that isn’t a problem ‘right now.’

However, at five months Bug’s head was growing faster than the rest of him and his doctor sent us down to Dartmouth Medical Center for an ultrasound through his open fontanel. Her suspicions were confirmed, Bug had a condition called hydrocephalus, which means water on the brain. I was so numb that I got it wrong, I thought he had hydrocephalencitus. An infection on the brain. I was pretty devastated regardless of what it was.

We went back to Dartmouth to see a pediatric neurosurgeon to find out what needed to happen. Here’s the deal, as long as a child has an open fontanel there is a pressure release and the extra fluid in the brain doesn’t do any damage. But if you do nothing and the fontanel closes the spinal fluid that’s trapped in the brain eventually will squash the brain cells into unusable mush. Not the outcome we wanted for our son. To relieve the pressure the surgeon need to place a tube in Bug’s left ventricle, run it to a valve placed on the outside of his skull and then thread more tubing from the valve under Bug’s skin, down into his peritoneal cavity (the area of your body where most of your major organs hang out) where it would be absorbed.

I tend to trust that doctors have their patients’ best interests a heart. My husband doesn’t have that much confidence in them. So when the surgeon said Bug would need surgery my husband said no, we need a second opinion. So we drove almost three hours to a the children’s hospital in Boston and met with a second surgeon, who took about five seconds to confirm what the first surgeon said. My husband’s point was of course they wanted to do surgery. That’s what surgeons do. I was more focused on what would happen when Bug’s fontanel closed. No, focused isn’t the right word, I was terrified.

I guess terror trumps distrust because after a couple o f weeks of arguing my dh agreed to let me schedule the surgery. I needed surgery too, my Gall Bladder was acting up – as they are apt to do if you are a mother of twins. So six weeks before Bug’s surgery I had mine. Nothing like an overabundance of surgery to up the stress factor. I started losing my hair because I was rubbing the same spot on my head over and over.

The day of Bug’s surgery found us at the hospital at five a.m. The nurses had me put him in a little hospital gown and we stood in the pediatric waiting room not speaking to one another. Bug was seven months old.

About fifteen minutes (give or take a couple of hours. Who really knows how long it was?) my husband cracked. He said something along the lines of “I can’t do this,” and “I’m taking him out of here,” and headed toward the door. I blocked the door and made soothing noises like “It’ll be okay,” and “If we don’t do this there will be brain damage.” I was able to keep my husband from removing Bug from the room, but I was furious. Now, if anything went wrong, it would be my fault. It was not longer a team decision but me forcing my will over his. Yes, it was the right thing to do, and I knew it. But what right had he to put me in the position of being the One Who Made The Decision. If Bug didn’t survive this brain surgery it would be on my shoulders.

The nurse came and I carried my little boy into the operating room. I held him while they put him under. Then I made my way to the waiting room where I sat in suspended animation while a surgeon drilled holes in my little boy’s head.

If you know me, then you know that Bug is now fourteen. He survived this surgery and several more. Some children with hydrocephalus have many surgeries every year. We’ve been lucky. If you can call having your head opened up on five separate occasions lucky. This was only the beginning of a fourteen year process. So far. It will never truly end. But I will talk more about that in another post.

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{ 13 comments… read them below or add one }

Carolyn November 14, 2016 at 10:54 am

Hey my name is Carolyn and I am a twin who was born in 1967 with hydrocephalus. Luckily they noticed the size difference in my head. Shortly after I was born. I had the shunt placed in my head at a few weeks old in a hospital in New York. Thankfully I had no complications and no further surgeries. I was able to not need the shunt at about ten and never had further need to have surgery. I out grew the tubing and went on to well in school. I graduated with a masters in social work at 26. My prayers are with you and your son that he will be healthy and happy. Thanks for your story .


Kate November 29, 2016 at 4:23 pm

Hi Carolyn,

Thanks so much for your story, I’m so glad you have not had any complications. You’ll be glad to hear that my son is away at college and doing very well. He still has his shunt but hasn’t had any trouble for many years now. Knock on wood.


lucyxxxx July 17, 2015 at 6:26 am

I have identical twin girls and one has hydrocephalus xxx


Kate July 17, 2015 at 10:29 am

Hi Lucy,

If you ever need to talk you can reach me at I know how difficult it can be.


Megan Coakley March 23, 2012 at 7:29 pm

We can trade war stories at the conference. The difference is that I have always felt like my husband and I were in it together. That’s a heavy load to bear alone, no matter how awesome you are. Hugs to you and Bug!


Julie March 22, 2012 at 4:52 am

I couldn’t comment yesterday, I was too angry. Glad others jumped in with what I was thinking though.

Big love Kewl Kate, don’t EVER doubt yourself again. But, if you do, re-read what you wrote and what we said.


Judy, Judy, Judy March 22, 2012 at 4:10 am

I’m glad Bug is still here. And I’m sorry you went through the trauma of your son being operated on and having to stand up to your husband at the same time.


Kris March 21, 2012 at 9:56 pm

Wow! What an amazing story, Kate. Poor Bug…glad to hear it all went successfully though.
Isn’t it amazing how strong and focused we can be when something is really important to us.


Kimberly March 21, 2012 at 1:15 pm

How terrifying. And how dare your husband try to take the coward’s way out. You proved what I already knew to be true, that a mother’s will and strength is a force to be reckoned with.


stephanie March 21, 2012 at 10:03 am

where’s the internet emoticon for ‘everything turns out okay in the end’ or ‘crying with you now’ or ‘now i need a hug’? you’re a strong woman, sweetie!


Nan March 21, 2012 at 9:16 am

Oh holy Mary, Kate–I’m with Karen–crying, needing to hug you, and smack you DH. I can’t imagine how terrified and sick at heart you must have been then, let alone the fear you’ve carried for so many years about little Bug. God bless you, sweetie, and I do hope that talking about it, sharing the experience, makes it easier for you. We’re always here for you, baby!


Kate George March 21, 2012 at 9:30 am

It’s time like those that you find out what you’re made of. So although it can be difficult I’m proud of who I am. Inside this ditzy exteriour (I must remember the word one of my friend’s uses to describe me) inside I have a core of steel. I’m glad to know that about myself.


KarenB March 21, 2012 at 8:37 am

Sweet baby Jesus, Kate. One short blog post and I’m in tears and wanting to leap through my computer screen to hug you and shake the begeezus out of your husband. What a terrifying time that must have been.


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