Hydrocephalus Facts

• Approximately 1 Million people have Hydrocephalus in the US. 

• There are believed to be 180 different causes.

• There is no CURE and very LITTLE research. The NIH spends 60 Cents per person with hydrocephalus per year compared to $300 per person per year with Juvenile Diabetes. 

• It costs the United States 1 billion per year in health care costs to treat Hydrocephalus. 

Please Sponsor Team Tyler for the walk in Phoenix this October. Help us raise awareness for the millions that have this condition. 

Please join Team Tyler HERE and any amount of money you can or would like to donate, please do. In honor of these warriors, please help them fight longer!

September is Hydrocephalus Awareness Month

Hydrocephalus is a condition of the brain that is derived from the greek word "water." Most people know it as "Water on the brain" or fluid on the brain. The "water" is actually Cerebral spinal fluid (CSF)  and it has accumulated in the brain because of a malfunction or defect not allowing it to leave the brain.

There are several forms of Hydrocephalus. The first form is congenital. Meaning that when you go in for that "BIG" ultrasound and they are looking and measuring the head, they are looking for abnormalities in the brain and head size to see if your baby has Hydrocephalus. It is a preterm diagnosis for most if the condition is congenital.

There is also acquired hydrocephalus in which the was some kind of trauma or damage done so that the CSF couldn't leave the brain causing a back up of fluid. This back up of fluid or obstruction, causes the head to swell and can cause blindness and brain damage if not relieved from the patient.

There is also a Normal pressure hydrocephalus that can be a cause of dementia and a few other forms. But the 2 above are most common.

Prematurity and brain bleeds are a huge factor for children to have acquired Hydrocephalus. Tyler was one of those statistics.

They University of Utah 2003 data suggested that 1-2 children in 1000 are born with Hydrocephalus and account for 0.5% of all PICU and neurosurgery unit admissions. It is a rare condition, but  a serious one none the less.

The only way to treat hydrocephalus is with a Shunt. Or a catheter in the brain with silicon tubing that runs under the skin and carries the fluid out of the brain and into the heart or abdomen. The shunt was invented in 1960. Very few major advances have been made to the treatment of hydrocephalus. The course of action is the same as it was SO long ago.

The failure rate of a shunt is 80% in the first year and can malfunction at any given time.

Hydrocephalus is grossly underfunded and research is almost non existent.


Tyler was diagnosed with Hydrocephalus in the NICU in October of 2005. We were transferred to PCMC where Tyler underwent his first brain surgery. He had a reservoir placed where his doctors could take fluid off his brain when it accumulated until he grew out of the condition or he needed a shunt. As time went on, he did have long spaces where we were not pulling off any fluid.

Tyler left the NICU unshunted. In February 2006 he underwent another brain surgery for a condition called Sagittal Craniosynostosis.  About 30 days after that procedure Tyler got very sick. We went by Ambulance up to PCMC where his heart rate was going lower and lower. Finally they did a CT scan and he went in for emergency brain surgery to have a shunt placed.

30 days after the initial placement of his shunt, and after a month of him crying non stop, we figured out that his shunt was over draining. We were immediately taken in and a revision was done on his shunt.

In 2008 Tyler got sick and was sick for about a week until we figured out that the sickness was not the stomach flu and we needed to go back in for another revision. 6 months later, his shunt and broken again and we were back in the operating room.

We have been stable, but every throw up sends me into a major panic attack. I don't know if it means brain surgery, or just a night of vomit. We have since developed seizures and have grown much bigger. But so far the shunt is still working. In the last year we have had a few ultrasounds, MRI's and CT scans where we see all the extra tubing in his belly. We also see the extra shunt in his head that they couldn't get out.

Tyler has slit ventricle syndrome and he is a very peculiar case. His Doctor, Dr. Marion " Jack" Walker, is one of the best neurosurgeons in his field in the slit ventricle department. We feel lucky to have him.

We would love to find a cure. We would love better treatment options. We need more awareness!

 We will be walking this year at the Phoenix walk in October. Please click HERE to donate in Tyler's name!

Pots and Kettles

You know that time that you are reading something and you think.. "SHUT UP! I do/did/ OMG that is happening, all the time."

Yeah, that is me.

Facebook. Oh dear facebook... You teach so many lessons.

Recently a friend/acquaintance that has spent the last year going through a trauma posted about people complaining about mundane things, when they should be thankful because they are not seeing  their baby dying or being sick. And I realized I use to do that.

I say use to because I did. Something I learned is that I can't judge a person by what I have had to go through.

Example #1: When I was pregnant and shortly( 8 years or so... cause it still bugs me but I don't say anything any more) after it bothered me to no end when people would complain about being pregnant. One of my best friends from my mission married a girl. They had a typical pregnancy and I was friends with his wife while they were going through their pregnancy. She started to complain about her pregnancy at 32 weeks. She was really adamant about some things and I made what I  thought was a innocent comment and I got hate mail. LOT of it.

See, having had a 25 weeker, I can attest that having a baby early is not the best idea. I have learned that people never think that their kids will never come early. They, like myself, never imagine that the inside of doctors offices would feel like home, or that you will become best friends with your pediatrician. But then it happens. So hearing people complain about mundane things, like being uncomfortable and wanting an early baby would make my hide chapped.

But I have learned to them, they will never experience what I did, in order to be upset about anything else. Therefore, I can't expect the to understand why it would hurt my feelings.

Example #2: On Facebook ( see I told you, the place is FULL of life lessons.) there  is a run on moms who get worried or upset over sending their kids into the operating room for ear tubes or strabismus surgery. They carry on like this ONE surgery is the end of the world. I think " Come on, it isn't brain surgery."   But then I realize that this is just as hard for them as something like brain surgery, or botox is for us. Botox is no big deal. We don't think of the eye surgery or tubes as a big deal because we have done brain surgery, but the feelings of handing over your child is the same going in for small or big. Every mom is torn as the surgeon walks away with their child.

Something that I am not perfect at but am trying really hard is making sure I look at it not from my experience but theirs and then not passing judgment on them for what choices they make.  I don't know why they make the ones they do. I know what  and why I have chosen what I have based on what I have gone through.

I guess, I am calling myself out. The pot calling the kettle black. In hopes of becoming better!

"Let people repent. Let people grow. Believe that people can change and improve. Is that faith? Yes! Is that hope? Yes! Is that charity? Yes! Above all, it is charity, the pure love of Christ. If something is buried in the past, leave it buried. Don’t keep going back with your little sand pail and beach shovel to dig it up, wave it around, and then throw it at someone, saying, “Hey! Do you remember this?” Splat!

Well, guess what? That is probably going to result in some ugly morsel being dug up out of your landfill with the reply, “Yeah, I remember it. Doyou remember this?” Splat.

And soon enough everyone comes out of that exchange dirty and muddy and unhappy and hurt, when what our Father in Heaven pleads for is cleanliness and kindness and happiness and healing.

Such dwelling on past lives, including past mistakes, is just not right! It is not the gospel of Jesus Christ. In some ways it is worse than Lot’s wife because at least she destroyed only herself. In cases of marriage and family, wards and branches, apartments and neighborhoods, we can end up destroying so many others." * Elder Holland*

The End Of Hydrocephalus Awareness Month

September is Hydrocephalus awareness month. I haven’t done much this year because it is not something that I like to think about. I hate worrying about Ty and his shunt and a malfunction and right now we are in a very VERY good place. I know that is not always going to be the case so for now we go on as though we have no worries in the world. BUT, I want to make sure that we don’t end the month with NO facts about hydrocephalus.

1 in every 1000 babies have hydrocephalus and is as common than Down syndrome and MORE common than Spina Bifida and Brain Tumors.

It is the MOST common reason for brain surgeries in children. 

There has been NO changes in treatment for over 50 years with no new treatment, or advancement  for a cure.

More research is needed to give better and more positive outcomes for those with this disease/condition.

There is no cure. 

There is no remission. 


Treatment is the same as it was 50 years ago. For every brain surgery your shunt has a 50 percent of failing within the FIRST YEAR of 50 percent.

If you were to buy a car and have it fail within the year the company would be out of business, but unfortunately, that is what these kids have to look forward to.

We will be participating in the hydrocpehalus walk in November here in Arizona and will be doing what we can do collect money for hydrocephalus.

We love our Brain baby. We wish him well with his shunt and are so happy to be in the place we are. We are still on edge when we start showing symptoms of malfunction, but we know we can do hard things.

We are proud of how well Tyler does when he is in shunt failure and how well he bounces back. We are proud of how well he handles the adversity that is put in front of him. He has so many things stacked against him and he always, ALWAYS, does his best.

A huge shout out of love to our favorite Neurosurgeon in the entire world. Dr. Walker. He has always been Ty’s biggest fan. And a HUGE shout out to Dr. Elton who decided to desert us here in the dessert and introduce us to Dr. Shafron who takes GREAT care of us and is a great help when needed.

Thank you, to those who support us financially when we do the walks and for those that support us when we go through brain surgeries. We are truly blessed to have Tyler be so great.

Education and research is needed to help those who are diagnosed with Hydrocephalus. And it takes a great person to be a brain surgeon!

Happy Shunt-aversary!

February 13Th Marks the official one year mark of the last Shunt malfunction and revision. It isn't the last but making it a year is HUGE... HUGE!

Shunts scare me. They are something I never thought I could deal with. they were not something I thought I could handle. But we have done it. I still freak out when we get throwing up. I freak when something is off but I no longer long for a CT scan in my basement that I can stick him in. I trust that my instinct, Dallas and IMPRESSIVE vomiting and a pediatrician that loves him will get us where we need to go.

Here is our September 2008 revision :

Because he was so sick he had to have it done quickly and so his hair was not fully shaved. We asked on he next revision to shave it al off.. PLEASE!

This is him the next day at home.. Safe and sound. Just where I like him.

Shunts scare me because I have to watch my baby die. Literally. The brain shuts down his heart rates, we can't keep him awake and he is vomiting in hopes that his head will lose pressure by throwing up. He can't focus, sit up or do anything. The longer we wait to take him in the lower his heart rate and the more emergency we become.

I am so thankful for my baby tonight. I look at him and wonder how I made such a beautiful little person. How lucky I am that I am his mom. And that he is an ordinary miracle.

February: The anniversary month

This February starts a Wonderfully busy month of anniversaries for us! In fact if we can get through it we will be looking at much better odds.

Our average for Valentines spent together as a couple is 1 in 4.. we are hoping to make that 2-5. What do you think our odds are of getting to spend that day OUTSIDE a hospital?

What has kept up in the hospital for this day:

Feb14, 2006 Tyler was scheduled for his first craniosynostosis surgery. It meant a week in the ICU and a day or 2 in the infant unit. Cranisosynostosis is the premature fusion of his sutures in his head. We were told at that time it was less than one percent chance we would be doing this again.

Feb 14th 2007: Tyler was the one percent and we had to do a total skull reconstruction in the mean time Dallas was trying to get us ready to move to a new state.

Feb.14th 2008 We got to spend together because his seizure monitoring went faster than normal and they were able to get him home faster. So it was the FIRST time we spend valentines TOGETHER.

Feb14th 2009 was met with a child in the ICU at banner desert from emergency brain surgery. So all plans we had were canceled to prepare for him to come home. Home coming from brain surgery includes all carpets cleaned from top to bottom. All surfaces bleach and floors scrubbed till you can eat on them .

So what predictions can you make for Feb.14Th this year?

The day after......

A 24 hour flu bug infested our house. We are SO glad it came and has now exited( hopefully) Yep, people get sick. Yep, its most likely the flu for "those" people but for us we are on the edge of our seats. When do we freak out totally and run him to the ER for CT scans, fluids and possible surgery, OR do we sit and wait and wait and wait and then wake up all fine. Or wake up all NOT fine and the above surgery comes into play.

I realize to some that the stomach bug wouldn't cause this much anxiety. It is just some vomit. But I can honestly say after the 2 shunt revision we last experienced, those little vomits in a shunt baby is what the docs call " impressive and better then projectile vomit" it is so impressive It literally will span my entire bed. Mostly because the force they are puking from is from so much head pressure a person could NEVER understand ( even myself) They are literally trying to relieve the pressure they feel in their brains.

After a vomiting episode Ty will lethargically lay there for a while. Literally, lay there. This is where my next *key* point comes into play for checking shunt function. While he is laying how bad are his eyes moving? How fast? Can he focus on ONE object? Can his eyes hold still long enough to not be worrisome. Tyler has a condition called nystagmus. His eyes always move. Constantly moving. Jerking even. The link has a eye that is like Tylers. His moves a lot fast but the idea is the same. Tyler does have periods where his eyes are VERY still. But a shunt malfunction is not one of them. AND a really bad sickness makes his eyes very bad. But I have seen his eyes both ways and I can tell a difference between head pressure and flu pressure. His eyes were not bad yesterday.

We got him to sleep pretty early for him and he did really well till about midnight when he was restless. I thought more puking would instill but it didn't. At around 3 am he woke up and said he was all done ( signing this at 3 am) and he wanted food and a drink. I got him his drink, and offered crackers. And a laptop did wonders for movies. HOORAY!

He was up from 3-5 snacking on crackers, drinking and watching movies to which I finally switched OFF the computer and put him back to sleep. Which we did sleep. Till around 9:45. It was the longest I have seen him sleep in a WHILE. It was not totally rest full to me because he has to sleep touching me and I really needed to roll over :)

Today we pretty much had our kid back. He was jumping on trampolines, throwing numbers and letters, watching Barney and being bored. And no throwing up.

So YES we are thinking bug.

Yes we can over react but I think it is understandable. We have learned to go through our "chain" of commands.

Ty is sick what do WE do:

Call Dr. Marisa, see what they suggest. After asking and answering a few questions from them they will tell me what they "think." Yesterdays was Nancy, if you think that he is broken you will know in a few hours ( its to early to tell either way) take him to PCMC. Call me. We will get things goings if needed. Thanks for not freaking out!( though I think we freak her out sometimes)

Lay there with him. Hug him and love on him. If it is a sickness dang that stinks. If it is a shunt he needs to know that we LOVE him soo much and that we will fix it and as he gets sicker and more pressing to get to the ER, we need to be close to monitor for seizures and those pesky heart rate drops.

And last but not least:

Get a blessing. At the end of the day that was what put him to sleep. A simple and powerful blessing from his dad. Ty had his eyes closed the whole time and opened them simply to say amen.

We love him and hope to make it to Feb. where we reach our one year with a shunt. We can do it. But above all we move on and keep going. Monday we go back to our routine.. a little skinnier and a little more weak but full force forward.

Pray for it to be a bug

I have realized the oddity of the tittle. But I am begging for the vomit, lethargy and extreme irritability to be a bug. Yes A BUG... My other option is it is a shunt... pray for a bug...

In knots

I am the worst nervous mommy when it comes to sickness. I drive Dallas insane but I can't help but feel total panic.

On Saturday Ty did the early 3 am wake up. I couldn't shake the idea that he was not feeling well but he acted fine and asked for food around 5. I went downstairs and got him food and Dallas came down to take over and sent me back to bed. I was so thankful. I had a photo session in Salt Lake so I wanted to feel rested and I had to work at 6:30 pm so rest was really appreciated. I wasn't feeling well. Nauseous. I chalked it up to nerves but it felt like morning sickness. I am not pregnant so I KNOW it was something else.

I headed to the photo session ( now feeling bad cause I am almost sure it is a bug) ate some crackers and was feeling tired but OK. I got home, Nicky was watching Ty and he had fallen asleep. She said he was acting fine. Ate a ton of toaster struddles and fell fast asleep.

He was not interested in lunch but I offered to take him to the park. At the park a small little fall threw him into tears. So we came home where he laid on the floor crying and whining. I felt so bad for him. And then I noticed the fever.

My dad and mom stopped by and Dallas and my dad gave him a blessing. I noticed some gagging and knew that we were gonna have throw up. Through out the evening I started throwing up to but wasn't sure if it was from nerves or from a bug. Ty had a pretty rough night. He had a fever through out the night. Acted much better off and on through out the day. However tonight we are back sick. He took some motrin with LOTS of coaxing and holding and some night meds which we hope will make him and mom feel better. I am not far behind!

So why the nervous mom-

We have a shunt. One that tends to break. One that has broken every six months. Shunts and stomach bugs have the same symptoms. How do you know what is what?

As Dallas and I have been frantically googling trying to ease our mind and we find OUR own blogs but nothing else that will put our mind at ease. NOTHING. I call the on call at our peds and she doesn't think it warrants a trip to PCMC right now. He only threw up once today and it was not " impressive" vomiting. Like massive HUGE amounts that are violent VIOLENT. So we wait.

The fact that I still worry about losing my child 4 years after the initial events of his rough start makes me mad. I hate how I still have thoughts of watching him get sicker and sicker. Feeling helpless as I watch him die. He is alive yet I still think of those times.

When he is sick both of us have anxiety. Both of us watch him closely. I hate how it all plays out. Every cry and whimper at night has me on edge, every time I can't hear him breathe I freak out. I have to know he is OK.

I can't bear to think of the alternative. No matter what I feel regarding any given situation he has changed my world. As sucky as the weeks are or the therapy after therapy he is mine. And thinking a shunt breaking puts him at risk makes me so sick.

I am in Knots and along with me not feeling well either, knots are not fun!

I know he will be fine whatever we need to do. But I still can't help but worry.