Hydrocephalus can live a normal life just like you and me.
Many people who doesnt know get so scared and they may decide to do abortion instead of giving him/her a chance to live
I have made this blog for a very long time, and tend to write about this for a very long time, but I am scared to tell the world and what effect would it have on my family
However I realise by doing that I am being such a selfish person
If what I experience can help out many others, why I dont share my story?
First of all, many said that hydrocephalus cant be cured and will always need a shunt to fix this
My kid is shunted when he is 5 days old, hydrocephalus detected on pregnancy H-1 before giving birth. The diagnose was hemorrage due to bump, so when your obgyn said that your water can protect the baby inside your tummy, its true but also not 100% true
Specially if you are in your late trimester, just be extra careful
I didnt fell or anything, but only one event in the car where there is a big hole on the road and the car was quite bumped, normal bump not that kind of scary bump, I think this is what caused this eventhough we cannot be 100% sure
We asked a neuro in Singapore Dr Phuah and he said to wait until the baby 3 months old and it will still be okay and see how it goes
However we talked a neuro surgeon and of course because he is a surgeon he suggest to operate straight away, because if we wait too long he is afraid that all the excess water in the brain will cause more damage
Back then we didnt know sinshe (accupuncture), I wish I knew this option before we undergo the surgery. If we know this maybe we can try this 3 months and see how it goes before doing the surgery
I already know 2 sinshe who both claim can cure hydrocephalus if the hydrocephalus is due to hemorrage, not an abnormal brain structure
Anyway, Normal Pressure VP Shunt is planted, and this works fine until he is 6 years old
From time to time he will get headache, and this headache will go away if he sleeps
But one day this headache stays and suddenly he got strabismus and double vision
We do an MRI and found no hydrocephalus, so they rule out any shunt problem
However, after a very long and careful study, they neuro surgeon in Indonesia decide that he got a slit ventricle syndrome, this happened because the shunt drain more water than it should. Maybe this also because the hemorrhage in his brain is gone so his brain is normal but with shunt planted, then the water drainage become more than it should
Slit ventricle syndrome also can cause headache just like hydrocephalus and also can raise brain pressure which cause the strabismus
Slit ventricle syndrome can happen, maybe because of the siphon effect, read on google what is siphon effect
So if you need to plant a shunt, please ask more about this siphon effect to your neuro and ask them how to prevent this
If you know the answer please kindly let me know to so I can know more
The neuro surgeon in Indonesia see slit ventricle syndrome, and they also see there are no more blockage
So they decide to try to block and clamp the shunt, so the water cannot drain anymore from the shunt
Hoping that the ventricle will go back to its normal size and eliminate all symptoms of the shunt problem
This is where all get worse and scary
Yes its true that his brain is not blocked anymore
Yes its true that he might not need a shunt anymore
BUT what they are failed to put into consideration is, he has live like this for 6 years, with this kind of condition where his brain is okay but he got shunted, so his brain adapt, his brain texture adapt, so when they make a sudden change such as blocking the shunt, it makes his brain pressure rocket up
This high brain pressure cause an extremely scary symptom such as losing sight and weak limb
That was the lowest point of my life, where I have no control and only God and prayer can help my kid, this is the turning point of my faith from me who has gone astray to me who prayed to God again and coming home to seek for His help
The neurosurgeon want to do the next step which is to give him Mannitol via IV to put the brain pressure down, however we just cant trust them anymore and we want to change hospital
So we change hospital, we flew from Indonesia to Singapore for a better medical service
In Singapore they scheduled an operation on the next day, they give him Diamox pill, which is also to reduce the pressure. I wish the have given this to him in Indonesia, but they suggested mannitol via IV instead
After the Diamox was taken, his condition seems better, less headache, and his eye sort of can see again. So I realise this is a temporary blindness and I was praying so hard to God to be kind to us and give him back the light to his eye, and God was so good to him and my prayer is answered.
In Singapore they decide to add a shunt, not change it but add another one in the same line.
After operation he goes to ICU for monitoring, and an ICP monitor was attached to his head, this is to see what is his brain pressure after operation
I was hoping he can see straight away after operation, but he cant, my heart broke, I was so scared beyond reasoable measure
However when we shine a light, his pupil react, even it is very very very little
The next day when we shine a light, his pupil react even better but still little
His eye can see after operation day + 3, he can see the clock on the wall, he can play and pressing the hospital bed, and I am so thankful to God because he is so good to us and let a miracle come to my kid
We went home, and now Operation day + 3 months and he is doing well
No more headache where before the added shunt he will get headache maybe once or twice every 2 weeks which can be solved by sleeping
He still got strabismus but we can see the progress that it get better everyday and his eye is better after he wakes up.
We know that healing is done during deep sleep
What I do to treat his strabismus is accupunture, essential oil for nerve healing, a lot of prayer, and balance diet
If you just undergo a shunt placement, get yourself an MRI 1 month after operation, and then maybe 3 months after operation, and after that every year or every 3 year just to make sure everything is okay.
MRI is not harmful because it doesnt use any radiation, instead they are using magnetic resonance. So if your shunt is programmable, make sure you have a neuro surgeon on spot to adjust your shunt after MRI.
My kid didnt get a follow up MRI after his first placement when he was 5 days old
I wish my neuro surgeon asked me too, but instead he said no need to do an MRI if there are no problem
Actually it is a good idea to do an MRI when you are good so you know the brain condition which you are feeling okay, this is what I read online on shunted patient in USA
MRI cost almost 5x of CT Scan, but due to the safety I prefer to choose MRI everytime over CT Scan
My kid will turn 7 this March
So far he has good grades, he has a good personality and his friends love him, he is on track on any motoric and physical development, he is the light of my life
What used to be my problem while raising him is he was a picky eater, he got nosebleed sometimes, and before his added shunt he often get headache when he is stressed, under pressure, and hearing loud noises.
However after this new shunt placement, his appetite is very good, he gained 3 kg, his head is good eventhough hearing loud noises or feeling unhappy, nosebleed still happen sometime but we checked to a doctor and she said this is because of a thin layer inside the nose.
That is my story, please help me pray for my kid so that he can be good and keep being in a good health
I really hope he can live a good life, helping others, and keep spreading hope for people who are in need
If you happen to come across a hydrocephalus or a baby's parent who may benefit from my story, please share this to them
I am willing to be contacted via whatsapp 081703106094 if you need more information about anything that I could provide
If you need any donation I am also willing to help to raise it for you, just wa me and I will see what I can do to help you
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