Hello, my name is Andrea, & I have 2 WONDERFUL children, oldest is Anthony – 7yrs old and lucky to be healthy as a horse!! Younger child is Rowan, right now she’s 18months (her DOB is 04/01/08 Yep, an April Fools Day baby!!) & we are from Pennsylvania, round about an hour outside of Pittsburgh.

I guess the story would begin back in early January’08 when I was between my 6th & 7th month of Pregnancy. I had decided to switch OBGYN’s after hearing a few “horror stories” from the OBGYN I had picked to deliver Rowan (the one the delivered my FIRST child no longer practiced, so I had to hand pick!) So I switched to the “Best of the Best” about an hour away in Pittsburgh Pa, at Magee Women’s Hospital (a VERY well known “Women’s” Hospital in the state of Pa, WV, & south eastern OH) I went for my FIRST appointment at Magee Hospital where the OBGYN ordered an UltraSound to make sure the “due date” that was given to me by the PREVIOUS OBGYN was correct, AND just for a basic “check-up” since the last ultrasound I had was in my 2nd month of Pregnancy..

I lied down, expecting to find out the gender of my baby and the due date of my baby, to be UNpleasantly surprised at the ultrasound technician’s words after 2-3minutes of looking at my belly.. she said “There is a signifigant amount of fluid on your baby’s brain, I need to get a specialist in here IMMEDIATELY!” as she bustled out of the room. My heart DROPPED. You NEVER think it’ll happen to YOU.. So the Doctor comes in, he continues with the ultrasound while ofcourse MY mouth is running a million miles a minute asking question after question while my fiance I think was too stunned for words..

The doctor promised to answer all of my questions to the best of his ability when the ultrasound was over, that he wanted to get as many, accurate pictures as possible of our baby’s head, heart, etc. When he was done, he led us up to a room where we met with him(the ultrasound Dr.), an OBGYN that deals with “high risk pregnancies”, and a Neurologist from the Women’s Hospital that ALSO got to take a look at my ultrasound pictures… Then they dropped the bomb.. “Your baby has what is called Hydrocephalus. She appears to have a strong heart,lungs, and kidneys(etc) Her ONLY issue is her head.. and from what we can tell from this first ultrasound, is that the part of her brain that tells her to ‘breathe’ has been signifigantly damaged, and prettymuch, YOU are the only thing keeping her alive right now.. there is a good chance that after birth, she will need life support.”

I was HYSTERICALLY balling my eyes out at this point.. He continued though & said that they had ALL decided that MORE ultrasounds needed done, they needed to be looked at by a Neurosurgeon from Children’s Hosp. of Pittsburgh, & even possibly an MRI of my belly could tell them A LOT. Needless to say, I was A WRECK the last trimester of my pregnancy.. The OBGYN DID end up calling for an MRI of my belly though, and that was when we finally got some HOPE. After the MRI we were told that her Hydrocephalus WAS severe, but NOT as severe as they originally thought with only ultrasounds to go on.. He said there was only a SMALL CHANCE that the part of her brain that would tell her to breathe had been damaged, & how they thought she’d have “NO quality of life” had also been changed to a good POSSIBILITY of “quality of life”…

So we were then sent up the road a block to the Children’s Hospital of Pittsburgh where we met with her Neurosurgeon for the 1st time.. He said she seemed like a good candidate for the (ETV)<- Endoscopic Third Ventriculostomy surgery) rather than putting in a Shunt (& we learned all about the different types of shunts, etc) & he also noted that EVEN IF the ETV surgery ends up being “Unsuccessful” (which there WAS a chance of) he would STILL be able to put the shunt in, no harm no foul. So that was the plan – They set my C-Section date for 4/1/08 & her Neurosurgeon set her ETV surgery date for 4/3/08.

They did a vertical C-section on the above date (because they were VERY concerned about her head, the size of it, & being very careful with it) She was wiped off, weighed, then whisked off to the NICU at Magee Women’s Hospital.. they never even got a “legnth” on her like how they “NORMALLY” get the height AND the weight of the baby at birth, nope, not my Rowie, just her weight… Several hours later my epidural wore off & I was able to “feel” myself again lol & ALL I wanted to do was go to the NICU & see my baby Rowan.. They had unfortunate news, they had to send her up to Children’s Hospital 2 hours after birth b/c the NICU at Magee Women’s Hosp. felt that she needed to be at the NICU at a Children’s Hospital b/c of her Hydro AND the fact that THEY felt she had some slight breathing issues..

So I cried & cried & cried – all I wanted was to see my baby & now she was a block away from me! So her dad walked up to Children’s Hosp. and stayed with her up there while I was stuck recovering from a vertical C-Section at Magee Womens… The next day however, the docs & nurses at Magee’s saw how sad I was & said that on SPECIAL occassions (like mine) they DO allow their paitents to leave for 3 hours during their stay as long as it’s approved by my OBGYN. (and it was) so they called a cab for me & put me in a wheelchair & allowed me to go see my baby at Children’s Hospital!! I had never been happier! So I visited my baby for the first time when she was 1 day old, held her the ENTIRE time I was there, spoke with the doctor’s & nurses that had been caring for her in the NICU there about how she was doing, they said that whatever “breathing” issue Magee Hosp. sent her over there for seemed to clear up on its own, & she was stable, had a feeding tube, & was prettymuch just awaiting her brain surgery on the 3rd..

She was born with a head circumference of 45.5cm. So the day I got discharged from MY hospital was the same day she would be undergoing her 1st brainsurgery at CHILDREN’s HOSPITAL! They discharged me at 11am, & her surgery was scheduled for 1pm – so I rushed up there to spend as much time w/ her before the surgery as possible, then her Neurosurgeon came out & said it was time to take her back. I balled my eyes out. AGAIN. Even her daddy cried this time.. we didnt knw WHAT to expect.. We waited patiently in the NICU waiting room and approx.2hours later he came back in & said that EVERYTHING went JUST as planned, the surgery was successful & she was JUST waking up from her general anistetic <

Her head size was then monitored for 10 days after, her Neurosurgeon said THIS was how we would knw if the surgery was TRUELY “successful” or not, if her head size decreased & continued to decrease over this 10day monitoring period, then we know the surgery worked.. If her head size stayed the same or grew, then we would need to put in a Shunt.. SO OFCOURSE, her head size stayed the same for a few days, then eventually went up 1cm. On the evening of the 10th day her Neurosurg.came in & said he was sorry but he’d have to consider it unsuccessful, that with a NORMAL, SUCCESSFUL, ETV surgery, the head DOES NOT stay the same or grow.. it decreases in size.. So day11 after the ETV surgery, she was approx.2 weeks old, there we were again, in the NICU waiting room, I was balling (yet again) & so was her daddy.. approx. an hour & 1/2 later out comes the Neurosurg & said same thing as last time – everything went as planned, she was comming out of recovery & we would be able to see her soon.

But this time he was right *Knocking on wood* Her shunt has been working beautifully — she has not had to have ANY further brain surgeries yet to date. The last thing he Neurosurgeon told me before we left Children’s Hospital whenever we asked him how long (in HIS personal opinion) did he think Rowan’s shunt would last, he said “Normally, if you have a VP Shunt that lasts 5years, consider yourself VERY LUCKY.” So in other words, every 5 years (maybe less) Rowan will have to go in & get her shunt revised, or replaced.. Thank Goodness we haven’t had any problems yet. All CT Scans & Ultrasounds since shunt placement have shown that its doing it’s job. HOWEVER, she DID have to stay in Children’s Hospital of Pgh. until she was 1 week away from being 3months old.. She had some “suck,swallow” issues, feeding issues, weight gaining issues, etc. It just seemed like ONE thing after another kept keeping her from comming home!

At 1 point in time, a doc from the NICU said “We might just have to put in a permanent feeding tube..we just cant get her to eat right, & she continues to lose weight little by little each day..” Keep in mind, when she was born she was almost a 10 pound baby! (then again, who knows how much of that was CSF fluid in her head, she DID have a 45.5cm head circumference..) I remember asking a nurse in the NICU one day what the AVERAGE newborn baby’s head circumference is, & she said “oh, usually anywhere from 16 to 18cm.” I was like, OMG!!! I couldn’t BELIEVE that my daughter’s head was THAT much bigger than your average newborn! So while in the NICU I think her LOWEST weight she dropped down to was 8pounds. So..not TOO bad, but the docs were still concerned. Finally they brought up an Occupational Therapist to see her in the NICU & she worked with Rowan every day for almost2weeks, & got her “feeding” on the right track so, she has NO feeding problems today, 18months later.

So she comes home from being hospitalized for almost 3months, & everything is going really well until BAM, a she’s 1 week away from turning 5 months old, & I hear her making funny sounds around 4am.. I check on her, & she’s taking a GrandMal Seizure..I woke up her dad & we called 911 immediately. I dont think I was ever SO scared in my life.. I didnt think she was ever going to come out of it.. It was a 3hour long seizure..I know, sounds unrealistic.. but they gave her shot after shot after shot of Ativan & FINALLY it stopped.. HOURS later.. but God only knows how long she was seizing before I woke up & HEARD her, ya know?!

So they kept her in Childrens Hospital for almost a week, running test after test after test, comming back with NOTHING. All the Neurologist could tell me was that “hopefully it was just a fluke seizure – sometimes children with Hydrocephalus and/or shunts can take a seizure from time to time.” Then what do ya know almost exactally to the day, a month & a half later, she took ANOTHER seizure.. We called 911 again, they went through same routine as the time before, got her to our “Local” hospital first, got her stable, then lifeflighted her to Children’s of Pittsburgh. This time LUCKILY it wasn’t quite a GrandMal seizure, and ALSO LUCKILY it didn’t last 3 hours, however it DID last approx. an hour & a half.. which is STILL not good.. So they kept her for a few days this time, ran tests, & came back with: “We’re diagnosing your daughter Epileptic”

They put her on a seizure medication called “Keppra” which is one of the “newer” anti-convulsants out on the market today (I’m currently reading an “Epilepsy” book that a RN/Nurse friend of mine has let me borrow!) So she continued to take seizures approx. every 2 months even after being put on the Keppra, but they’ve only been “Partial” seizures ever since.. The definition of a “Partial Seizure” is when the seizure only effects ONE side of the body (which always is Rowan’s RIGHT side), her right arm & leg twitch in synch, her eyes lock to the left, & she’s totally out of it. Her longest seizure was her 1st seizure, & her SHORTEST seizure ever lasted 47 minutes. One of the times she seized, I asked a doctor how long an “average” seizure lasts, & he told me “eh, anywhere from one to three minutes.. occassionally we’ll see one that lasts 5-10minutes but rarely ever longer than that)

So Rowan’s “hour long seizures” are doing QUITE a bit of brain damage, ALONG with the brain damage she ALREADY has had from day 1 with the CerebralSpinalFluid pressing against her brain, even while in the womb.. So after her last seizure, her Neurologist decided she wants to get “proactive” with her siezures… what she(Neurologist) HAD been doing, was increasing Rowan’s dose of Keppra every time she took a seizure. NOW, every time Rowan gets weighed, at any doctor’s appointment, she wants me to call her with Rowan’s weight, & every time her weight increases, so will her dose of Keppra. & THIS should *HOPEFULLY* eliminate her seizures..(or at least keep the darn seizures from lasting hours).. So say a prayer & wish her luck please! Her last seizure was August 1st — tomorrow will be October 1st <<2 full months!

Cross your fingers with us!! Well THEN OFCOURSE we have to add some “icing” to the cake, and at a general checkup with her Neurosurgeon at the age of 6, almost 7 months, he was concerned with how Rowan’s legs were still curved in (Rowan was in the breech position in my womb, all ultrasounds showed that she was sitting in “IndianStyle” inside of me) so she was born with VERY bent “inward” legs.. all NICU dr’s & nurses said her legs must’ve been like that because of how she was in the womb, & they would straighten out on their own. Well they never did. So THAT along with the fact that she was 6-7 months old & not sitting on her own yet, nor anywhere NEAR crawling, he ordered an MRI.

He told me he suspected either a mild to moderate case of SpinaBifida OR a moderate to severe case of Cerebral Palsy. After the MRI, I was informed that it was infact Cerebral Palsy. He wanted her recieving Physical & Occupational Therapy ASAP. So I did. Contacted what’s called The”Early Intervention”Program in the state of Pennsylvania.. She began recieving PT & OT once a week. Rowan was then referred to the Cerebral Palsy “clinic” to meet with a team of “specialists” up at Children’s Hospital (she still goes there every 6months actually) But the evaluation she got suggested that she get her Physical Therapy increased to TWO times a week, rather than just the 1X a week that she was recieving at the time..

So her PT began comming once a week & ’round about’ during this same time period her occupational therpist suggested that I make an “eye appointment” for Rowan that there was something just “not quite right” about her eyes..that whenever she would do “eye tracking” with Rowan, she seemed to have “blind spots” where her vision would just stop, & things of that nature.. So I wanted the best of the best ofcourse, (& not to mention Children’s Hospital already had ALL of her medical records since birth),so I made her an eye appointment with an Optomologist

However the Eye Doc WAS in agreement with the OT in the fact that Rowan’s sight MIGHT come & go at times because her eye tracking WAS poor, but theres no “real” way to tell that “for sure” until she gets older..so at that time, the main focus was just put on the Nystagmus, & hoping that the fluid drained off her optic neres to avoid eye surgery. So we went back every 4 months & eye doc was right, her Nystagmus improved more & more with every visit. Until her most recent visit. Approximately 4-5 months ago, we went for a routine eye checkup & her Nystagmus HAD improved once again, but since her last visit she’d developed Astigmatism…*sigh* So she was prescribed glasses. I took her glasses prescription to WalMart on a reccommendation that WalMart had the best selection of glasses for infants/toddlers.

Found her THE CUTEST pair of “Dora” glasses w/ a matching case and the first week or so, she wore those glasses ALL day, no problem. I was SO proud! & then THE SECOND that she realized she could take those glasses off & chew on them (as she’s TEETHING like CRAZY right now) It’s been VERY hard getting her to keep the glasses on her EYES ever since..She likes to dragging them down her face into her mouth.. *sighing AGAIN lol* So getting her to wear her glasses is right now, a “work in progress”

On July 13th,2009 we moved back to my hometown, (actually my home-STREET that I grew up on) We have my parents down the road, and even my GrandParents FURTHER on down the road! Trouble was, we switched counties, & I “Guess” protocol with the “Early Intervention Program” in Pa. is, when you switch counties, you have to get a NEW Early Intervention CaseWorker, AND your current therapists have the “option” if they want to make the drive & follow you to your new county or not.. So Rowan’s Occupational Therapist was NOT willing to make the drive to our new home, but her Physical Therapist said she WOULD make the drive, but couldn’t fit it in TWO times a week.. she would be willing to come to our new home once a week only..

Late July ‘09 it was time for Rowan’s 2nd “6 month check-up” at the Cerebral Palsy Clinic.. so she was observed & reccommended that she also begin speech/feeding therapy & that she COULD NOT drop down to Physical Therapy only once a week, that our Early Intervention Worker would have to find us a SECOND PT. So the next week we meet our new Early Intervention Worker, & I tell him all of my concerns, & all of the CP Clinic’s concern’s & he worked it out for us that Rowan NOW recieves Physical Therapy TWO times a week, from TWO different Therapists (which I thought at the beginning would be a negative thing, it’s ACTUALLY proving me wrong & working out to be a positive thing – I like their 2 different styles of teaching..)

Rowan ALSO recieves (a new) Occupational Therapist once a week, a Speech/Feeding Therapist once a week, a Vision Therapist once a week, and a “Special Instructor” (or also known as) a “Developmental Specialist” once a week which is KINDA like, a “baby/toddler” Teacher. I really like it..they work with Rowan’s “cause & effect” toys, etc. THAT kinda stuff..

So THIS is Rowan Elizabeth’s Hydrocephalus Story.. I know she is ALSO diagnosed with Cerebral Palsy, Epilepsy, & eye “issues” – but according to her Neurosurgeon, ALL of theese OTHER issues she’s been diagnosed with, she has BECAUSE of the Hydrocephalus >> Well, the brain damage that the Hydro caused from pressing up against the brain for SO long.. even to this day she STILL has extra fluid on her brain, & always will for the rest of her life..That’s why her Shunt will need replaced every ??? many years INDEFINATELY..which is why all of the Hydrocephalus Organizations are fighting SO hard right now to find a CURE for Hydrocephalus rather than the “band-aid” of a Shunt.