5 months free without shunt revision

It has been 5 months Syafiah is free from any shunt revision up until today. It is approximately 151 days since her 3rd shunt revision which was on January 16, 2009. Alhamdulillah as this is the longest shunt usage so far.

Her 1st shunt placement was on June 11, 2008. Approximate usage was 140 days until the 1st shunt revision which was done on October 29, 2008. 2nd shunt revision was done after 44 days from the 1st revision with the longest stay in HSB (12 days). The shortest was between 2nd shunt revision and 3rd shunt revision, which was 35 days only.

The reasons of failure are various:-

1) 1st revision - supoptimal shunt function, swelling around reservoir & shunt compressible but slow refilling.








2) 2nd revision - shunt infection.

Switch the shunt from right to left side. She has both 'karipap' on her head. Her hair was fully shaved by a Chinese specialist! (yang hensem tu.. huhu!)


I tell you, stitches were opened without any drugs.

3) 3rd revision - blockage at the distal end.

Post operation on 16 January 2009.


Before she was brought home on 19 January 2009.

So far, she has gone through 7 operations - 3 EVDs, 1 shunt placement and 3 shunt revisions with 6 times of CT scan! I can't imagine how is it like to be on the bed in the operation theater so many times. She is indeed a survivor and tough fighter! I don't think I can't make it and have a spirit like hers.

This is her today (dengan kepala yang grunge sebab kemek!). Just look at her left hand, has to be straighten by HO.

This is one of the "why" I don't push her and expect her to be what I want her to be (i.e. should do this and this, at certain age). She went so much of ups and downs. At one time her left side couldn't move at all, but now they could move actively. I pray and hope that this shunt will last longer and miracles would happen along the way, insyaAllah.. ameen!







p.s. : Mak dia yang tak tahan dok spital sebenarnya. Masa 3rd revision tu saya surrender habis. Badan sakit, selsema. Though HSB boleh kira selesa untuk yang menunggu, tapi saya tetap juga sakit.

24 hours to live...

She has only 24 hours to live. The future was uncertain. The world was gloomy and suddenly turned to nowhere to go. I was not ready for a life long battle. Indeed, it was one of the saddest days in our lives.

She was a healthy baby in the womb. We, and even my gynae, could not predict that she'd born as a preterm baby. Even worst, we did not know her gender until she was born (her positions varies everytime we 'looked' at her). Everything was ok and everything happened so fast too! This journey was and is actually her destiny! She chose to be the one.

On that particular day, specifically on Wednesday, 16 January 2008, I received a phone call from HSB around 3 pm, required me to be in NICU immediately. The nurse who called me spoke gently and called me twice. I said I've to wait for my husband. My husband came back around 4.30 pm and immediately brought me to the hospital. I was resting at home alone. Mom was in Mekah, MIL took care of my kids at her house.

At NICU, one of the nurses came and took my blood. I was really calm. Dr. S came to us and asked us to sit on a sofa at one corner nearby the pantry. We waited. Then about half an hour she came again and explained what's going on with our daughter. I did not cry just yet!

I was so emotional when I looked at her condition. I could remember her chubby cheeks the first day she was born, turned to be so skinny. Pale. Almost no blood at all. Wires and drugs were everywhere to be seen. And not to forget the breathing support machine too. No reaction at all.

There were several complications. She stopped to breath (apnea), lungs hemorrhage (one of the vessels in her lung suddenly exploded) and when she lost her blood, meaning she lost the oxygen too. The oxygen is significant for all body parts especially the brain. Consequently, it led to a brain injury called intraventricular hemorrhage (IVH). As a result of this condition, her CSF couldn't be absorbed naturally as the blood clot has obstructed the channel.

I tried to control my emotion as much as I could as I knew that she'd feel the same way too. Dr. S came to me and pat on my shoulder trying to console me. I knew that I've to be strong and showed her how much we supported for her to continue living. Once in a while I would cry quietly - in the pantry while breast pumping, in the waiting room but it must be not in front of her. I tried to justify on what should I do next and what would happen to our lives in future.

I could not stay in HSB that night as the bed was full. To rest, me and my husband would stay for a while in the waiting room. Dr IH, the head allowed us to be in HSB for unlimited period and he even spoke to the guard to let us in whenever we liked to be in. He said to the guard that our daughter was in a critical condition.

I entered and exited NICU many times. At one time around 9 pm, we met Dr IH when he was checking and examining Syafiah. He explained that in next 24 hours was a very crucial period. That she might only have 24 hours to live. They have to monitor her very closely. I also noticed that he set the breathing machine to the max. He said it was necessary since her lungs was very weak after the complications but at the same time, he was afraid of the consequence, the lungs might collapse! If it was collapsed then there's nothing more that they and we could do.

I waited and prayed all the time. Deep inside my heart I was badly hurt. I was helpless as I could not perform Hajat prayer and could not recite Quran too (more to calm myself down), mom was unreachable, only left my husband and God to turn myself to. We returned home on 12 am with heavy hearts. If I stay, I could not rest properly, if I go home, I would leave our daughter there. But even if I stay, there's nothing much I could do except for waiting and watching her (plus doa continuously). We left it for Allah swt to take care of her.

When she survived that night I realized that she could make it and survive another night. I knew that she has the determination to continue and fight for her life. To see her determination, it has lifted my spirit up. I must be strong for her and I should not be defeated by a small baby who is a tough fighter. She herself is a miracle sent by God to us.

I'm glad today that I did that for Syafiah. We've been through one of the saddest days in our lives and we wish a future full of joy and miracles ahead! InsyaAllah.. ameen...




I wrote an entry yesterday and deleted it few minutes after that. If you guys have read it, please forgive me for showing my stupidity (again and again!).

They Cut Open My Head (Sherman Alexie)

They Cut Open My Head

By John Sharify

SEATTLE - Under the subject line on the e-mail, a question from a viewer! I knew Lori's question wasn't rhetorical. It's a question that deserves an answer!

It begins 'Why?'

"Why does a two year old boy have to have 17 brain surgeries just to stay alive?" That boy is Noah. Lori Poliski wanted me to know about him, and about her own son, who has had four brain surgeries.

William is 20 months old. He can't walk yet. He may never walk she tells me, because of what's happening in his brain. You might know it as 'water on the brain.' It's a condition known as hydrocephalus, a neurological condition.

"It means that the 'water tanks' in their brains are big," says William's doctor Tony Avellino, a neurosurgeon at Seattle's Children's Hospital. Dr. Avellino has an answer to Lori's question, why so many surgeries?'

The shunt valve he was holding in his hand offers part of an answer. Shunt valves are surgically implanted into the brain to drain the fluid.

"We do have a treatment but shunts are like used cars. They actually break down," says Dr. Avellino. That's why many times so many surgeries are needed. Some children might have to have two or three repairs. "Other kids, 30 or 40!" says Dr. Avellino.

It's not what any mother with a child who has hydrocephalus wants to hear. But there is hope. "They cut open my head," says Sherman Alexie, filmmaker and author.

Alexie wants mothers to know there is hope. After all, he spent his first seven years of life in and out of hospitals with seizures. And now?

"I'm a success story," Alexie says. The filmmaker plans on producing a documentary about hydrocephalus. "I'm fine now," Alexie insists.

Hopefully one day soon we'll be able to say that about the boy who's had 17 brain surgeries. Noah and William. "He's lucky to be here."

We're lucky to have him," says his mother Lori.

Children's Hospital in Seattle just approved $1.5 million for hydrocephalus research. That's considerable considering what Lori Poliski tells us: "The government gives just $600,000 a year for this condition compared to $300 million for diabetes research!"

For more information about hydrocephalus research and what you can do to help, go to http://www.hydroresearch.org/

Also, if you want to learn more about Noah, you can visit the web site his family created for him: http://www.noahslifewithhydrocephalus.com/

I want to join the hydro association and I want to register Syafiah's story with HSB itself and Supporting Malaysians With Disabilities program so that many people can benefit from the story especially in my country.

I've read a story of a hydrocephalic daughter recently in Metro (I'll scan the article). She's 6 years old and couldn't walk until today. I guess our society is not well aware to the successful stories of shunt recipients such as kak Rosliza and her son (the one I met in ENT clinic) and even there's a boy in our village who is a shunt recipient after he's 2 years old. Now he can walk at the age of 5.

There's a case of a mother who insisted not to plant her little girl with the VP shunt during Syafiah's stay in NICU. I tell you.. there's no alternative cure for this condition. And in fact, she's risking her girl's life by doing so.

Mungkin ada yang takut sebab ia melibatkan pembedahan dan runtunan hati seorang ibu mengalahkan minda yang terbuka. Let's not be afraid to help your own child. Don't let your emotion kills you and your daughter's future.

An inspiring proof and final decision

I have to thank you people as you keep visiting this blog until it's defeating the number of surfers for my main blog! And some of you have put this blog into their bloglists too! Many many thanks especially to a brother - Aboo (cehhh... macam artis buat ucapan la pulak kan... perahsantan!).

One of them is Sarah, Violet's mom all the way from Australia. Please forgive me for my broken English... hukhukhuk!

Ok.. let me share you one of my precious experiences in my entire life that happened to me today. I met the following mother and son at the ENT clinic for Syafiah's ORL, some kind of discussion with the specialist about her hearing thingy. She's just fine. No more ORL, only left the audiology for monitoring. I'm not sure how they classify the hearing level but she could listen very well to the sound especially on her right ear:


Mother with a hydrocephalic 23-year-old son. Planted since 3 month-old. Twice revisions on the age of 5 year-old & 18 year-old.

I saw his reservoir by myself. And I guess he's one of the miracles that I want to see by my very own eyes. An inspiring proof that a hydrocephalic can walk, can talk, can read, can hear, can see, can communicate with the people just like anybody else. He was there because he has a hearing trouble specifically on his right ear. He wears an auditory aid. He's studying at a private school for OKU (special school).

His mother told me that she never sent him to any therapies but she did it all by herself and family in her own yard. And he managed to walk at the age of 2! She kept saying that Syafiah's head is smaller than he was when he's small and everything will turn out just alright.

Such a pleasure to meet the real person and to hear from the experienced parents and the recipient of VP shunt about their life stories. At the end of the conversation, I saved her handphone number and I snapped their picture.

The CT scan was done again yesterday. I was there to hold her hands when the machine was doing its scanning. The result - everything is ok but the neuro team doesn't want to discharge her very soon. It is probably because of the switching position of the shunt. Both sides of her head are 'injured'.

She vomited few times. From the explanation, it is most likely because she's still adapting herself to the new shunt.


I got this survey 2 days ago. I couldn't fill up some of the sections. For example under the Emergency Unit, as we've never been there before. We just went straight away to the clinic/7C (the ward) for admission. VIP service anyone?


Got this goodies from Selangor Religious Department (JAIS). If you stay longer, you'll receive more goodies as a part of social activities by Government body or private companies. I've received the 1st one from JAKIM in June.

I'm now at home. Syafiah is with my two nieces right now. I'll join them only during the day as it is tiring to stay in the ward all day long. I feel 'hot', seems I will get a fever any time soon. Office keeps calling me asking me when I will go to work. So, I sent them her pic with the stitches. Why on earth don't you pay us a visit? Not even asking about my daughter! From office to HSB is not that far. Only 10 mins drive. Even a Ch***** manager of hubby's co came to visit Syafiah on Sunday noon whilst actually she was off the whole week before. Frankly, I'm a bit upset!

The bad treat comes to an end. Finally, I've made a solid decision by tendering my resignation effectively today! Remember the Oprah Winfrey Show I have told you earlier? "Focus on your strength". Be brave to leave something you don't really up to do. Don't ever try to please someone else. Do something at your interest. I don't care about the money (though the pay is good!).

Finally! I just feel so free and relief, I can concentrate on raising up my children.. I can do any freelance work. I can do anything I want... or the very least I can go back to a very dangerous job in Malaysia. Can even be caught up.. A BLOGGER... hohoho!

Why I blog about her in a new blog...

Quoting words by words from Violet's mom:

To tell why I blog?....well....

To tell you the complete truth I never thought I would ever do something like this.

But surprisingly it has been very therapeutic.

In the first entry I made, I found it almost relieving just to get off my chest how I was feeling and trying to cope in a new world of medical conditions, specialists, hospital life etc which then was something foreign to me.

On top of that I wanted in some way to share our experiences of Violet's health conditions with others; either family, friends or parents starting to go thru a similar journey.

As I first found when I researched these conditions on the net, I struggled to find other peoples stories and experiences, which is what I personally wanted to hear about.

Even if this helps 1 person somehow and shows even though it's not without it's challenges, there can be light at the end of the tunnel. Then this blog will have done its job.

How true... masa mula² terjadinya peristiwa mendung kelabu pada Syafiah, saya mencari maklumat bagai nak gila di internet ni.

Masih terngiang-ngiang di telinga Dr. IH tak memberikan harapan langsung pada kami. Anak bakal tak kenal ibu bapa, mentally retarded (he didn't mention it but he meant it that way), akan berlaku sesuatu pada kaki tangan si anak lepas setahun... yadda yadda bla bla bla...

Kadang tak cerita langsung. Info banyak saya dapat dengan membaca fail Syafiah sendiri. Pun begitu saya perlu berterima kasih kepada Dr. IH dan teamnya kerana telah berjaya menyelamatkan anak saya pada hari kejadian. Cukuplah saya cerita darahnya tersembur keluar dari mulut dan hidung. Badan berisi terus jadi kurus cekeding.

Betul ke? Takkan tak de harapan langsung?

Saya teruskan pencarian. Susahnye.... Demotivated! Then something happened to Syafiah's reservoir masa bulan 7. Gelembung. Allah swt tunjukkan jalan kepada cerita Noah, Sherman Alexie, Violet, Brittany... Tengok... berapa banyak putih daaa... Dalam banyak² yang paling inspiring adalah cerita Sherman Alexie. Boleh further study in medical lagi... perghhh! Sebenarnya shunt dia tak jadi apa pun cuma slow refilling.

Mungkin 10 bulan terlalu awal untuk menceritakan betapa 'amazing'nya si Syafiah ini. Tapi saya nekad untuk berkongsi dalam main blog saya. Satu aim saya - semoga apa yang saya lalui ni dapat memberikan panduan terutamanya pada emosi si ibu. Bahawasanya anda tidak bersendirian. Saya tak kata saya pandai handle perasaan. Kadang kalah jua. Biasalah perempuan... Emosi masa berpantang paling hebat diuji. Tapi insyaAllah jika kita percaya pada apa yang tertulis di Loh Mahfuz, kita pasti mampu melaluinya.

Yang 'amazing'nya ialah bagaimana kita boleh melihat seorang anak kecil fight for her life. A very tough fighter! Jadi.. untuk apa terus beremosi jika anak sekecil itu lebih boleh menahan sabar, menahan ujian dan alhamdulillah sehingga ke hari ini dapat bertahan dan survive. Saya perlu kuatkan semangat!

Lepas itu saya terfikir... kenapa saya tidak buat blog baru untuk Syafiah? Lebih senang untuk orang mencari maklumat melalui blognya saja dari blog rojak kat sana tu..:P. Berkongsi mengenainya adalah antara perkara terbaik pernah saya lakukan. Tapi satu je.... jiwa kena kental. Nak cerita dalam keadaan sebak pun susah juga. Kena lakukannya secara berfakta. Saya bukanlah seorang pakar neuro tapi jika menceritakannya memberikan sedikit info mengenai dunia perubatan.. why not? Lagi pun ia adalah berdasarkan pengalaman saya sendiri.

Kita tak tahu untung nasib atau umur seseorang tapi sekurang-kurangnya saya dapat menyumbang sesuatu dan sedikit info pada masyarakat terutamanya orang² yang berada di Malaysia. Kira macam social contribution jugalah.

And that's my main aim!

"Sherman Alexie (The Infamous Script Writer and Director)"

Sherman J. Alexie, Jr., was born in October 1966. A Spokane/Coeur d'Alene Indian, he grew up on the Spokane Indian Reservation in Wellpinit, WA, about 50 miles northwest of Spokane, WA. Approximately 1,100 Spokane Tribal members live there.

Born hydrocephalic, which means with water on the brain, Alexie underwent a brain operation at the age of 6 months and was not expected to survive. When he did beat the odds, doctors predicted he would live with severe mental retardation. Though he showed no signs of this, he suffered severe side effects, such as seizures, throughout his childhood. In spite of all he had to overcome, Alexie learned to read by age three, and devoured novels, such as John Steinbeck's The Grapes of Wrath, by age five. All these things ostracized him from his peers, though, and he was often the brunt of other kids' jokes on the reservation.

As a teenager, after finding his mother's name written in a textbook assigned to him at the Wellpinit school, Alexie made a conscious decision to attend high school off the reservation in Reardan, WA, about 20 miles south of Wellpinit, where he knew he would get a better education. At Reardan High he was the only Indian, except for the school mascot. There he excelled academically and became a star player on the basketball team.

In 1985 Alexie graduated Reardan High and went on to attend Gonzaga University in Spokane on scholarship. After two years at Gonzaga, he transferred to Washington State University (WSU) in Pullman, WA.

Alexie planned to be a doctor and enrolled in pre-med courses at WSU, but after fainting numerous times in human anatomy class realized he needed to change his career path. That change was fueled when he stumbled into a poetry workshop at WSU.

Sherman received the 2008 Stranger Genius Award in literature in Seattle on September 13th.

Sherman and Charles Burnett present a Milestone Film release of The Exiles, directed by Kent Mackenzie.

Visit his website - shermanalexie.com - by clicking here or on his picture for more stories.



"Gina Marie (1978)"

I was born just before Christmas in 1978. It is believed that during a family holiday gathering, I was exposed to a young relative that had strep-throat and fever. I developed spinal meningitis with secondary hydrocphelus. At two weeks of age, I recieved a surgically implanted ventriculopertineal (VP) shunt.

I was admitted to the U.S. Navy base in Jacksonville, Florida, where I went through a series of spinal taps, blood work and x-rays. The base facility was not capable to handle my condition and was transferred to the Baptist Children's Hospital in downtown Jacksonville, where I received my first shunt. The surgeon reportedly held no good news or hope for my recovery. But, I proved the doctor wrong and I survived.

As I set up residency in the ICU, my Uncle Wayne was two floors below being treated for his bout with Cystic Fibrosis. My mom was able to visit each of us. I was eventually transferred to critical care and shared a room with a 7 year old who was in a comma. Several weeks pass and my meningitis came back. I was transferred to Shands Teaching Hospital in Gainesville, Florida. My mom rode in the ambulance with me.

Click photo for more stories.


"Noah Benz (02-09-2004)"

IVH Grade III and IV Bleed, Acquired Communicating Hydrocephalus with Medtronic Programmable VP Shunt and Codman Programmable LP Shunt, Slit Ventricle Syndrome, Metopic Synostosis, Calvarial Vault Expansion surgery (04-28-05) Auto Immune Neutropenia, moderate to severe motor and speech, severe oral issues (G-Tube), and mild cognitive and sensory issues.

Our sweet little angel came into our lives February 9, 2004 and made his entrance into this world a slow one. After almost 4 and 1/2 hours of active pushing he finally arrived and weighted 6 pounds 9 ounces. He was beautiful and looked so healthy on the outside, but because of the long labor he would experience damaging effects to his brain. Our first sign of this came 6 hours after his birth when he started having seizures and briefly stopped breathing. He was immediately taken to the NICU there at the hospital where he was born at. After many tests and ultrasounds they discovered he had a bleed in his ventricles and a possible stroke. They diagnosed this as an Intraventricular Hemorrhage ( IVH) grade III and IV bleed. This would be the cause of his Communicating Hydrocephalus and would mean the placement of a shunt was necessary. He was transferred to Seattle Children's Hospital and Regional Medical Center, where little did we know at the time would become our second home on and off throughout the first year and half of life. Here we would meet Dr. Jeffrey Ojemann the neurosurgeon that would save Noah's life and give us comfort through the many frightening and difficult times ahead. On March 3rd of 2004 Noah received his first VP shunt at three and half weeks of age after his head circumference jumped from 35.5cm to 39cm within two days. This shunt caused many problems and at 7 months he would receive his second shunt, this being a programmable now.

However, it was only the beginning to 15 more shunt revisions, 2 serious shunt infections requiring a total of 11 weeks on 4 different intravenous antibiotics, the diagnoses of slit ventricle syndrome, the placement of a second shunt this one being an LP shunt (lumbar peritoneal), the placement of his VP shunt into the third ventricle of his brain instead of the lateral ventricles, the usual place for a VP shunt placement, and the diagnoses of an auto immune deficiency called Auto immune Nuetropenia. Noah had a Calvarial Expansion (cranial expansion) on April 28th 2005. This procedure involved having almost all of his skull taken off and spacers put in between the skull bones to increase the overall size of his head. Giving his brain room to grow. They diagnosed this problem as Metopic Synostosis a type of craniosynostosis, Dr. Ojemann and his plastic surgeon believe this problem was acquired from having so many shunt problems and was not congenital.

Click his photo for more stories.


"9 Year Old Brittany"

I hope that you'll learn from my story that I'm a normal kid...and that you don't need to be scared of kids with problems...and you don't need to tease them. At my school, I visited all of the rooms to meet the kids and help them know how to help me if I fall down or hit my head. They learned to get the teacher quickly! Everyone watches over me at school now so I don't get hurt.

Click her photo for more stories.







"Little Charlie Rock (22 February 2004)"

Matthew was so small and so, so thin, he almost didn't look real laying in that acrylic box. We were given the rundown on his condition and made aware that he couldn't breath on his own, so he was on a ventilator. This was not what I bargained for when I got pregnant. Why wasn't my baby fat and active? We were given information on how the NICU operates. Basically, we were told that the twins would be in the NICU most likely until their original due date, May 20th. My babies were going to be in the intensive care for THREE MONTHS. Only then did it hit me that I wouldn't be leaving the hospital with my babies and the gravity of the situation began to sink in.

Then it was on to Charlie's room. The second I crossed the threshold, I began to cry. He had twice the equipment as Matthew and the floor shook terribly from the machines keeping him alive. I was sick to my stomach and I couldn't even stand up to see my baby. I wanted to see him, but I was so afraid. When I did get the courage to stand, all I could see was what looked like an extremely old man laying limp with TONS of tubes and tape. He didn't look like a baby at all. He was so tiny and the tape was so big that it didn't allow me to actually see him. He was under the bilirubin lights so everything was extremely clinical and nothing was hidden from sight.

I can't express to you how small he was and I will never forget how he looked, how his tiny chest rose and fell with each breath that the oscillator forced into his small body. There was no cuddling, no comforting my baby. He couldn't be touched and I wanted to scream and scream loud. I was mad at everyone. How could this happen? Then the nurse gave us the details of his condition. Charlie was paralyzed and on complete life support and he had a 50/50 chance of survival. I have never felt so hopeless as Brian finally wheeled me back to my empty hospital room.

Charlie & Matthew spent 66 days in the NICU. During those 66 days, we absorbed more medical knowledge than a first year medical student, and I'm not kidding. I couldn't even begin to tell you the numerous tests and procedures the twins needed to have to survive. I thank God everyday for the doctors and nurses in the NICU. They are truly wonderful, amazing people and we could never repay them for helping our "miracle babies".

Click his photo for more stories.


"Violet (16 August 2005) - Violet's Journey with Hydrocephalus and Microphthalmia"

They performed many tests and scans on Violet. She had an MRI on 24.8.05 and she was given Chloral Hydrate to knock her out long enough to stay still for the MRI or it would have been a waste with any movement. Trouble is by the time a porter comes (they are very busy people) to take Violet down to have it, she is already starting to stir. I had to sit near the MRI Machine, for my own benefit of knowing that she had stayed still, then I would know it had not been a waste of time. There faces said it all, as I was in with Violet I saw only 2 people performing MRI and then 1 going off to get more people and ended up with 5 people. Then when they had finished the scan, they would not tell me anything, even when I asked, so we still did not know what the scan had revealed.

The next day we were told, she had a brain condition called Hydrocephalus. The name originates from the Greek words ‘hydro’ for water and ‘cephalus’ for head.

We all have what's called cerebro-spinal fluid (CSF), it is a clear fluid which is made up of water, protein, sugar and minerals and flows from one ventricle to the next, circulating around the brain and down the spinal cord. The CSF is then absorbed into your bloodstream.

Hydrocephalus is when an event has occurred, which causes the cerebro-spinal fluid (CSF) to accumulate. The pressure then starts to build up within the skull. When the ventricles swell to a large size, the excess fluid can then cause pressure on the brain cells and cause damage.

Violet's Hydrocephalus is Congenital (meaning - present at birth) and Doctors confirmed that sometime during her development, she had a brain hemorrage, from which the blood has plugged up the brain's CSF pathways or ventricles, no longer being able to drain away, as they should.

Click her photo to access to her blog.