What is Hydrocephalus?

So many are unaware. Hydrocephalus is a scary and life changing diagnosis. Google can only take you so far. And actually it's best to stay away from Dr. Google. This I have learned since finding out about it.

Michelle was just 4 days old when we got a phone call from the NICU team asking us to come in and meet with a team of doctors to go over some test results. I can remember this day perfectly clear. It was the second worst day of my life. And I am sure it will always be. Sitting in the "fishbowl" looking out through the windows with a perfect view of her incubator and monitors listening to the doctors tell us that Michelle's brain hemorrhaged an was continuing to do so. That after a routine ultrasound on her brain they rushed her to Cat Scan to get a better picture of what we were dealing with.

They passed around a lot of terms that I didn't even understand at the time. And to this day there are still a few that will most likely I will never understand. In the end their words were clear, Michelle would be diagnosed as a patient who has Cerebral Palsy. They went on to say IF she made it over the next 72 hours that she would most likely be blind, deaf, and severely impaired in more ways then one. That she would require a feeding tube if she didn't get the reflexes down. That she would most likely be in a wheel chair and would never walk. The only good thing they said was that she was moving her left side.

The right side of her brain was the side that took the most damage. She had a grade 4 Inter-ventricular Hemorrhage on the right and a grade 1 on the left. She was still reguiring oxygen and was given 4 blood transfusions to help her body replace what she was loosing.

They said because of the bleeding there appeared to be blood clots blocking the ventricals in her brain. What that meant was the normal flow of cerebral spinal fluid was blocked. Kind of like when you kink a hose of sorts and you watch the water just build up looking as though the hose would burst. This was happening inside her brain causing her ventricals to swell and put pressure on her brain forcing it against her skull. They said we will watch and wait and if need be she will need brain surgery to help relieve the pressure.

We waited for 17 days. The morning of her 21st day the phone rang very early in the morning. It was a man I had never spoken to before. He said his name was Major Mark Melton with Madigan Army Medical Center and that he was a Neurosurgeon. He explained that over night Michelle had become extremely lethargic and was vomiting and another Cat Scan of her brain showed 3 times the amount of CSF (cerebral spinal fluid) that was there just a few days before. Her head had expanded so much during the night that they had 6 different staff members check her head circumference.  He wanted my permission to take Michelle to surgery and place a reservoir that they would take fluid off of daily until she was the appropriate weight to withstand a shunt.

I remember being frantic, driving with no idea how fast I was going and literally yelling at some poor guy from Shawn's unit to find my husband and get him to the hospital where our daughter was. When I got there she was gone. They had already taken her to surgery. I remember I almost broke the NICU doors in my frustration to just get out of there. Some poor social worker followed me and I unleashed on her not meaning to.

I had read about Hydrocephalus. The outcomes for so many were not good. A lot of patients didn't make it. Michelle had already been through more in 21 days then most people in a lifetime. I kept thinking, how was she going to overcome this? She came back to the NICU pink and full of life. They had taken so much fluid off of her brain the surgeon said a shunt would be 100% necessary when she reached 5 pounds. She had barely just gotten back to 3. We had a few long weeks ahead of us. Everyday they measured her head and everyday they took fluid off this little bubble and sent it off to the lab for cultures and each time her head circumference would shrink back down within a few hours.

When she was 63 days old she got her first ventricular-peritoneal shunt or VP shunt as many call them. She came home a week later. I felt like I didn't know anything about anything and here the hospital hands me this tiny human and says she's yours. I kept thinking what the hell am I going to do? How is this going to affect us all now that she is home?

After another week long stay just a few days after coming home it appeared Michelle had a virus and developed Epilepsy. Something they said generally happens in patients with any type of brain trauma. And there was no getting around that Michelle's was a BIG trauma. For weeks I took her back and forth to the pediatrician. For weeks they said she had colic. For weeks she puked on me, cried non stop and neither of us got any sleep. Finally we went to check in with her Neurosurgeon. He took one look at her at a glance walking by us and said we were getting admitted that it was clear her shunt wasn't working.. Wait what?! How does it just quit? How dare it!

What was supposed to be a 45 minute procedure dragged in a 4 hour surgery with no update. At 4 hours they finally called me to tell me that she was still in surgery and that she had a massive infection in her abdomen and it had spread up the shunt tubing to her brain. She spent 21 days getting antibiotics and had to have her shunt removed and her CSF drained into an external bag. They were finally able to reinsert the shunt and we went home 2 days later.

No more then a month later Michelle's shunt malfunctioned again. This time we spent less then 24 hours in the hospital and she was fine. We went another 4 months before Michelle needed another revision.

The Marine Corps decided we needed to move down to California from Washington state. When we got here I got the biggest eye opener into the world of Hydrocephalus. We met Dr. Hal Meltzer when Michelle was transferred from Balboa Medical Center to Children's Hospital in San Diego. It was still months before I really understood what we were up against. Extensive therapy, OT, PT, Speech.. The works!

Michelle went malfunction free all of 2007. In 2008 she had multiple revisions resulting in her getting 2 shunts instead of 1. Her hydrocephalus was becoming extreme. And not in a good way. In 2009 she had even more. In 2010 she had 4 within a week. She was revision free for almost 3 whole years until January 2013.

In January Michelle was diagnosed with even a more severe form of Hydrocephalus, Slit Ventrical Syndrome. She needed a shunt revision and had to get 2 in less then 24 hours. She was lethargic, vomiting, seizing, and everything else that goes along with it. Her heart was all over the place. She had shallow breathing. She was a MESS. The second revision was more of an emergency then the first. She was completely non responsive and her right eye was deviating to the right while her left stayed perfectly straight. It took them no less then 30 minutes to have her to the OR.

Things were OK for a few weeks. Until last weekend. Things became bad. She was showing signs again of shunt malfunction and I rushed her to the ER. We were admitted into PICU and didn't leave for 9 days. Michelle required a cranial vault reconstruction to help treat her Slit ventical syndrome. We now know she also had Craniosynostosis. This surgery has proved to be exactly what she needed. Were it not she would not have gotten better.

We face the unknown all day everyday. We prepare for the worst and hope for the best. When and if we ever go on vacation we have a list of doctors and the route to the closest medical facility that can treat her. We go to doctors appointments almost weekly. Therapy is weekly. Medications have to be given to prevent constipation. To keep the bowels from pushing up on her shunts so fluid can flow freely.

Hydrocephalus is a scary and unknown condition that doesn't have nearly enough awareness behind it. Millions suffer from it. Many are shunted and many are living with the possibility of needing a shunt at any point in time. There is no CURE, no fix. Just treatment. The treatment is the same each and every time. Brain surgery.

Brain surgery. That's it. Nothing less.

I wish I could go back and cross my legs and sit in a bed for 4 more weeks so as to give her brain more time to grow so as to not be so fragile. I wish there was a cure so that not only Michelle but MILLIONS of others would be able to OVERCOME this. Hydrocephalus occurs 1 in every 500 children born.. There are different forms.

Acquired (developing after a trauma)

Congenital (being born with it)

Normal Pressure Hydrocephalus ( Occurs in the elderly)

For more information and ways to help support a cure visit here or here.

That is what Hydrocephalus is. A huge learning process and things are changing all the time. There are different types of shunts. There are millions living with it and have never even had a surgery to help relieve the pressure. I am beyond thankful that Michelle has received the treatments she has. Her Neurosurgeon has time after time saved her life. All of the doctors and nurses are a god send. Who knows maybe some day someone somewhere will find a cure and no one will ever have to have another brain surgery due to Hydrocephalus.

Hydrocephalus
Craniosyostois
Epilepsy
Cerebral Palsy
Normal pressure hydrocephalus