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Hydrocephalus & Shunts: Personal Experiences

Paul, who died in 2003 at the age of 9 : Pauli was 4 wks old when he had shunt surgery. His little head grew from 31cm at birth to 51 cm at 4 wks. He showed sun setting eyes, vomited all his feeds, didn't sleep and cried all the time in his first four weeks. I had to mention a shunt to the doctors and that prompted them to take things further. They sent him and I home expected him to died, so no shunt was ever mentioned to me when he was born. A family friend who was a nurse brought me her nursing books to read and she helped me pursue the shunt issue. Within a week or two we had our first neurosurgery appointment and in the next few days Pauli had shunt surgery. He was in over night for observation and one more day. His head drained very fast. I had left at one am the day of surgery to go home and sleep. Only to return to the PICU at 6 am to find my child had not been flipped to his other side. His head was as flat as a door on one side because he was not turned. Because of that incident I never, ever left him alone
Without the shunt I do feel very strongly, that he would have past away with in weeks of being born. He had so much pressure in his head and he showed every sign of it!!!

Jacob who was born 10/16/02: His head was already large and his fontanel bulging. My daughter had a c-section and had to go back 2 weeks later to have a large blood clot removed from the internal incision. She has Protein S&C deficiency and they think it may have caused him to have a blood clot in his brain. His first shunt surgery was scheduled for Nov 22. He did fine, surgery was at 6:30 am and he was off the vent and back in a regular room by 2:00. That evening around 10:00pm they gave him some morphine for pain and within seconds he had arrested. They put him back on a vent and took him to PICU where he stayed on the vent for 2 more days and then went home fine.

Dec 24 we had a follow up with the neurosurgeon and everything looked good. His incision had healed well and he was not having an trouble. On Jan 2 , he started to vomit after every meal and his temperature dropped. His always drops when he is sick. His regular pediatrician found nothing, maybe just a virus and he was not dehydrated. He got weak over the weekend and still vomiting. We live in a small town 80 miles north of Dallas, which is where the neurosurgeon is. Monday morning we got up and had him at Medical City Hospital by 8:00am. They tapped his shunt in the ER and his surgeon came down and told us he thought he had bacterial meningitis and they were going to do a culture. Started IV and sent us up to a room. Wed morn they confirmed meningitis and said the shunt would have to come out and an EV drain would have to go in. He would be in PICU until the infection was gone and they could replace the shunt. The neuro pulled me out into the hall outside the surgery ward and asked me if I would talk Jakes mom into not doing the surgery. He felt like it was unnecessary and that we were wasting our time and his and that we should not medicate at all and let nature take its course. This is the neuro who separated the conjoined twin boys in Dallas. What a pro. I asked him if he had a cold would we treat that and he said yes. I said he has an infection and we would also treat that. He did the surgery and he was very sick. He had 2 transfusions hoping it would help build his strength. He was in PICU for 3 weeks, half that time on a vent. He was very swollen and had to lay at a certain level for the EV drain to work. He can't have pain meds so all he was getting was Tylenol and Motrin.

We went home the end of Jan without a shunt and when his head started to swell again we went back and they put his 2nd VP shunt in on March 28. He hasn't had any problems with his shunt since. Love that neuro. Needless to say, he wasn't on our Christmas card list and if there were anyone else here we wouldn't see Jake ever again. Now we only go back for yearly check ups.

 Carlos, who died in 2002 at the age of 9: During his first three months of life, Carlos was a very unhappy little fella. He cried almost constantly, did not feed consistently, and his head size was gradually increasing. We spent several sessions with the neurologists and neurosurgeons assigned to him at that time and they were extremely resistant. The surgeon was particularly difficult, stating that "these children don't know pain, they always cry, they'll never do anything'- you know the drill.

Fortunately, we had better cooperation from the lawyers who had been assigned as guardians to him (he was a state foster child at the time, and we were only foster parents waiting for adoption to clear). The lawyers helped us to pressure the doctors into seeing what was happening to him. The neuro surgeon eventually agreed to place the shunt. Carlos's surgery went well, he woke up smoothly, and was a whole new child. he still cried, but not constantly. His feeding improved.

We had no issues from the shunt for several years. When he was four (or maybe five) he was in the hospital for some seizure activity. During that stay, he shut down completely. Oxygen sats dropped, pulse rate dropped from typically 90s to 50s and lower. They moved him to intensive care and looked for a cause. The neurologists got involved and got neurosurgeions (a different batch in a different city) to come in. Using a syringe, they drained 20cc or so of fluid from his shunt site, and his condition immediately improved. The surgeons took him to deal with what they referred to as a "malfunctioning" shunt.

Fortunately for Carlos, the neurosurgeon checked the lower end of the shunt (where it drains to the abdomen). He found that a piece of fat or other tissues had blocked the drain. As soon as he cleared the tube, the shunt started producing fluids again.

Again, his shunt performed well until he was seven, when he experienced abdominal swelling (ascites). After weeks of back and forth with the doctors, it was determined that the fluid collecting in his abdomen was a result of his abdominal membranes no longer absorbing the volumes of CSF produced by the shunt. Our alternatives were to relocate the shunt drain to another location (pleural or venal, or external), or to find a way to go without. We ended up having a cauterization of the choroid plexus, which are the tissues that produce the bulk of our CSF. After that the shunt was no longer needed. Carlos was a different child after the procedure but he remained stable neurologically for the last couple of years of his life.

Leo, age 12: Leo got his first shunt when he was about a year old. I don't think they put it in right because it was bulging out of his head. The doctor just kept telling us to wrap it. Leo was very cranky (crying all the time). Like a month later he had to have a revision by a different doctor. This shunt was much better and worked for about 4 years. Leo got very sick. He didn't want to eat and was sleeping a lot, but I never thought of the shunt, so I kept him home. Time went by and Leo was vomiting everything and was very sick. We took him to the doctor and they started running tests on him but could not find anything. So they did a spinal tap, in the doctors office and found he had a shunt infection.  From there we went to the hospital, where they were unsuccessful putting an IV in. He was very dehydrated. They finally got an iv started. They started him on antibiotics hoping that it would clear the infection. But it didn't work. I remember them calling down to the University talking to doctors for different kinds of  antibiotics to use. They went through a few then, they finally got one that started working. We were in the ICU and the doctors could not get an operating room so took the shunt out right in the ICU. They then scheduled him surgery for an (not sure of the name) but it was an external shunt that they put kind of by his forehead. He had to lay level and could not be moved. This was done so they could see if he would drain his own CSF. They told me that sometimes after you've had a shunt for so long sometimes the body can learn to drain the fluid on it's own. But that did not happen for Leo. During this time he also contracted Pneumococcal Meningitis. He was very sick and they did not expect him to make it. They told us he was pre comatose. I didn't believe that, we all know how our kids get when they are sick. He was just in a very deep sleep. But he pulled though after a month in the hospital and all the infection was cleared and he had a new shunt put in. This is the same shunt he has today. So he has had it about 8 years. The doctor tells us now usually when they last this long they usually don't have any problems with them, and that his has a big roll of tubing to last a while in his stomach.

 Dillion, age 23 months: Dillion got his first shunt at 4 months old. After fighting several doctors and neurologists that just didn't want to give him one. We finally found one who was more than happy to place a shunt to make him comfortable. Dillion's head was at 73cm around when the shunt was placed. After the shunt was placed he felt amazingly better and was a whole new kid. He slept well, ate better and was in an all around better mood. Two months after his first shunt was placed the shunt broke through the skin and Dillion got an infection called MRSA in his CSF. He was admitted to the hospital for 21 days and in this time had 3 shunt revisions. Two of which were external shunts. Vancamycin was put directly into the external shunt for 19 days and then his shunt was internalized and he was sent home. Dillion has had te same shunt since he was 6 months old and we have had no problems with it. at all. As a matter of fact his shunt may be removed permanently in July of this year.

Jonah, almost 2: Immediately after birth, Jonah's head began growing at an alarming rate. Our pediatrician followed my lead and when I asked to see a neurosurgeon, his office made the appointment for me. We saw the neurosurgeon and he agreed that the baby need a shunt right away and surgery was scheduled to occur in less than a week. The surgery lasted as long as was expected and he came out of recovery and went straight to a hospital room that had three nurses for six pediatric patients. He was given the minimum pain relief ordered by the doctor until I could see that he was having breakthrough pain between doses. The nurses then upped his dose until he was comfortable. The neurosurgeon believed that he would not experience any pain at all give the diagnosis of hydranencephaly. I was highly offended by that belief and did whatever it took to make sure the baby was comfortable. He was in the hospital two days and I stayed with him the whole time.

He was discharged and ordered to remain FLAT for a period of weeks so that he would not drain too much CSF. He rode around in the car with a prescription from the doctor in case we were stopped. His incision took a long time to heal and he had a lot of fluid under the scalp around the shunt that made the area puffy and squishy feeling. The neurosurgeon noted it at each office visit, but decide it was of no lasting consequence. He left our foster home to go to his permanent home and has had 2 subsequent revisions.

From his Mom: His shunt soon infected after I got him. He had an IVD for two weeks and then another internal shunt. put in. Then his head started growing again and they replaced it again. Since then he has had no problem. It has been almost a year

 Note: After having his shunt for a while it was found that Jonah was actually not as severely affected as had been thought. He now has the diagnosis of Porencephaly. 

Chris, who died in 2003 at the age of 14: Chris had his shunt placed @ 5 months of age. No revisions, infections, or malfunctions. He passed away with the very same one he had put in as a baby. At about 8 years of age, the Drs were almost 100% convinced he was no longer shunt dependent. The only weird thing about it all was all the spinal taps they did, they never got any fluid. April

Kwan, 2 years 8 mos: Kwan has his shunt since he was 9 months old. We requested the
neurosurgeon to install the shunt since Kwan was 1 month old but no one had listened to us. It was so scary to keep watching his head size grow from 42 cm to 62cm, 74cm and at 9 months when it reached 92 cm we were just about giving up our hope. Very fortunately one good
neurosurgeon understood Kwan's pain and suffering, he decided to install the shunt (medium pressure). Kwan head size is now reduced and stayed at 72 cm and he is a very happy little boy. The original shunt is still in place, It does not seem to have any problem. We are wondering if Kwan is still in need of the shunt. I do not know if there is any danger of leaving it in place or should we remove it if he no longer needs one. Chuck & Nancy

James, who died in 2001 at the age of 2: When James fist came to live with us at the age of 11 weeks his head was already measuring about 40 CMS. We were never offered the option of having a shunt fitted as every one had decided James would not live for many more weeks. He had already been seen by a neurosurgeon and he had not even offered to shunt him and had passed him over to the hospice for palliative care.

As weeks passed and James head continued to increase in size we requested to see the neurosurgeon. At that meeting the neurosurgeon informed us that a shunt would not be done as in James case with his condition it would not work and children like him do not survive. Following this meeting we pushed for a MRI scan which we asked to be reviewed with a neurosurgeon and at that meeting he just confirmed the diagnose and dismissed us. As James neared one year old we became aware of the hydran group and that shunt operations were performed. The community paediatric doctor agreed as James was still with us to refer him back to the neurosurgeon who did not even reply. In the intervening period we obtained the name of a neurosurgeon at Great Ormond Street in London who might consider this operation. Our GP agreed to write a referral letter. The response from Ormond street was positive and we went for an out patient appointment. At this meeting the surgeon agreed to perform a shunt operation not to improve James neurological condition but to limit his head size which was 80 CMS by then. James was 18 months old when his shunt was fitted.

Although over the coming months James had to have his shunt replaced twice due to blockages he became a much calmer and responsive child.

If ever we were given the chance to care for another child with Hydran we would certainly fight harder in the beginning. It has become very apparent to us that James would have been a lot better if his shunt had been done when he was first born. Mandy

Other pages in this section:
Hydrocephalus Information

Hydrocephalus Glossary

 

 

 

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

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