Questions about VP Shunts

Hi—

My 5 month old daughter is going to have a VP shunt placed next week. She has met all the milestones for her corrected age but they still think she needs a shunt. I was curious how other children have reacted to a VP shunt. If anyone could answer any of the questions below I would really appreciate it.
1. Did it seem like the surgery to place the shunt was painful for your child?
2. Was there any bruising?
3. Did your child’s behavior, personality, motor function change?
4. Is it true that if you place a shunt you have a 33% chance of developing seizures?
5. What complications have you had with the shunt?
6. Is the shunt hidden or can anyone notice it?
7. Is this something my daughter will need forever or will her brain’s drainage system eventually start draining her ventricles?
8. Will the ventricles always decrease in size after the shunt placement?
Sorry for so many questions this just scares me to death. Any answers would be greatly appreciated.

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1. I dont think my child felt the pain but my son was born 3 months early. Was on a breathing machine, and was in and out of sleep all the time
2. My son had no buriseing
3.My son was to young to have any of that.
4. I have heard that. Not by his brain surgeny but by other people.
5. My son was told he couldnt play any sports at all in fear the shunt may break. He had a infection also.
6. With your child being a girl it will probley be eaiser for you to hide the shunt then me, I have a boy so his hair is cut short. But you can hardly see it with his short hair. It is just a little bump that sticks out. It look at lot worse when they are little compaired to when they get bigger. My son is now going to be 10 years old in 2 weeks.
7. My sons brain surgeny said that my sons would never work again. That this was life long. I dont know if it is due to the amount of damage done to his brain or not. My son had a bleed 3 on his left side of the brain and a bleed 4 on the right side of his brain. He was 3 months premature, and was haveing heart trouble as well as a breathing machine.

I know this is very scarey. I sat in front of one of the number 1 doctors in the usa if not the world. Dr. Ben Carson at John Hokins University, in Baltimore Maryland. He has performed mericals. There was a special on t.v about him. He said that my son would not make it out of surgery that if he did it would be a merical. My son did, they said he would never walk or talk,or anything by him self. He is going to be 10 in 2 weeks. He can do anything he wants He walks with a limp. He has little to no use in his left arm and hand.
But he talks to me everyday, we play together and go camping and he is in cub scouts . We go camping and everything. He is for the most part a very normall child. I know this is scary and if you have any more questions I'm here to help you with anything I can. I'm no expert but I will try even if you just need some one to talk to

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Maile has had a VP shunt since she was 3 mo old actual age. She was a 26 week twin with bilateral Grade 3 IVH. She is now 2 1/2 and has mild CP too.

1. Did it seem like the surgery to place the shunt was painful for your child? The surgery itself wasn't painful - general anaesthaia (sp?) was used. Afterwards, she was sore, but not outrageously so. They gave her some morphine but weaned her to tylenol pretty quickly. The nurses gave her the drugs but I could request more or less tylenol or morphine depending on how I thought she was doing.

2. Was there any bruising? No bruising at all. Our surgeon does not shave the hair so you couldn't even see under the hair - even today the only scar you can see is on her belly where they go in to place the line.

3. Did your child’s behavior, personality, motor function change? not at all - for the better maybe because she wasn't having headaches from the pressure building up.

4. Is it true that if you place a shunt you have a 33% chance of developing seizures? this was never discussed with us. I don't see how having a shunt would increase seizures though. Maile has never had one.

5. What complications have you had with the shunt? we had major infection when the initial shunt was placed. Antibiotics and an externalization was necessary but it was all cleared up. She also had a problem wtih the placement once but a second (really quick) surgery fixed that. She's had 6 shunt surgeries total and all within the first 6 months. Our surgeon placed enough line to last her until she is about 5 feet tall so unless it clogs up (which can eventually happen due to protein in the CSF) she will not need a revision again.

6. Is the shunt hidden or can anyone notice it? You cannot see the part inside the head. Maile's line comes down on the right side of her neck and into her abdomen. You can see the line on her because she is super skinny (21 lbs and 32 in tall at 2 1/2 yr old). On a chunkier kid you wouldn't notice it at all.

7. Is this something my daughter will need forever or will her brain’s drainage system eventually start draining her ventricles? Probably for ever. but, some kids do lose the need for it.

8. Will the ventricles always decrease in size after the shunt placement?
They should. With proper drainage they will go to a normal size and no longer put pressure on the brain.

As a side note, we were told shunts do no prevent any activities. Maile went on her first amusement park rides yesterday at Busch Gardens and was fine. we were told she can do anything anyone else can do - the shunt won't limit her. The important thing to know is what the signs are for a malfunction until they are old enough to tell you their head hurts so bad they can't stand it.

Good luck and email me if you have more questions or concerns. My cousin has a shunt also (he had lyme's disease) so we are familiar with them. He is a star on his HS baseball team and also plays soccer, scuba dives, and is a avid hiker and outdoorman. He's had his for 8 yrs (placed when he was 8, now 16).

Andrea

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1. Did it seem like the surgery to place the shunt was painful for your child? Not during but the first one there was lots of discomfort. they will send you home with pain meds. He didn't have to use any this time though just the first couple of days.
2. Was there any bruising?No just red marks
3. Did your child’s behavior, personality, motor function change? It got better especially after it was replaced this month. Keep a very close eye on her behavior that will be your indicator if anything is wrong. The neurosurgeon will see you on a regular basis until he is satisfied that it is working.
4. Is it true that if you place a shunt you have a 33% chance of developing seizures? I have no idea Christian has never suffered any seisures.
5. What complications have you had with the shunt?
We had no complications until this month. His Shunt was placed april of last year. He had not been eating well and started getting very very fussy. I took him to the er and they found out that his shunt had migrated into his chest and that he had a massive amount of fluid around his lung. After finally convincing the dr's that my son was never FUSSY. They looked into in more. They thought he may have a hole in his diaphram but they did not find one. His shunt was externalized and then replaced. We spent a week and a half in the hospital. Except for not rolling over he is back to himself and he had gained a pound.
6. Is the shunt hidden or can anyone notice it? Yes. You will notice the device in the back and you can kind of see the tubing under the skin of his chest.
7. Is this something my daughter will need forever or will her brain’s drainage system eventually start draining her ventricles? It really depends on the extent of damage. I think Christian will have his for life.
8. Will the ventricles always decrease in size after the shunt placement?Yes but only if the shunt is working properly. they will tell you what signs to look for. You will have f/u shunt series and ct scans. Every time you go to the er they will think something is wrong with the shunt.

Christian is a surviving triplet born at 26.5 weeks he as a brain bleed the second day of life. It was a grade III on left and grade IV on the right. He has delays but he is doing very well. There are many people in this world living with shunts and we don't even know it. they put in a enough tubing so that they can grow into it.

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I forgot to ask where are you having the surgery done?

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My prayers are with all of you. I know how you all feel right now. I will never forget the day he went into his first surgery it was all most mind numbing. I will pray for you .

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