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Monday 24 Sep 2018
Operations (Surgery) PDF Print E-mail
Saturday, 02 May 2009 13:25

Ben's Operations

Ben has had many trips to theatre for various procedures now.

One tip I would pass onto other parents is however long the surgeon says an operation is going to be you can always add on at least one hour, so don't panic if you are waiting for your child much longer than you were told.

Also take plenty of healthy snacks, drinks, change and earplugs for yourself when staying in hospital.

I have written this document and had it put in Ben's medical notes in all the three hospitals he attends, which has been of help to medical staff who have never seen a child with canavans.


July 2003 Ben was sedated at James Paget Hospital for an MRI scan



December 2003 aged 11 months Ben had a vp shunt inserted at Addenbrookes Hospital due to his rapidly increasing head size.


surgery_shuntFirst week at home after surgery surgery_shunt_a surgery_shunt_after_1_monthAfter one month


November 2004 aged 22 months Ben had a gastrostomy button inserted at the Norfolk & Norwich Hospital.

We were advised to have this done whilst Ben was young and healthy enough to tolerate the anaesthetic.

It was actually a year before  Ben needed to use the button for his feeding but we were glad of it.  It has also been a great advantage in giving Ben medication.


Ben's gastrostomy button





February 2007 aged 4 Ben had a fundoplication performed at Addenbrookes Hospital.

At first he had a lot of difficulties with gas bloat which took about 3 months to settle down.  Following this feeding went really well and Ben gained weight, unfortunately in October 2007 the fundoplication began to loosen and Ben became able to burp and be sick again, although not nearly as bad as before.

At this time Ben's surgeons feel it unnecessary to repeat the procedure.



June 2008 aged 5 and a half Ben was sedated for his first ever botox treatment at James Paget Hospital. Ben has continued to have botox 6 monthly.


toenails and adenoids

February 2009 Ben had both his big toenails and the nail beds removed at the Norfolk & Norwich Hospital, this was because Ben had had in growing toenails from the age of 18 months which were permanently swollen and sore.

Usual treatments had not worked but our orthopaedic surgeon recognised that this was because of the shape Ben's feet were growing due to his disability.

Under the same anaesthetic Ben also had his adenoids removed because they were large and hindering his breathing and he had a second botox treatment.


Toenails before surgery on a good day


Toenails after surgery

gastro-jejunal tube

July 2009 Ben had and endoscopy to check his oesophagus and fundoplication wrap and his feeding tube was changed over to a gasto-jejunal tube. He still has access to his tummy as the button that has been used has two ports, one to his tummy and one to his jejunum.

The idea of this is to try to further prevent wretching and being sick.  At the present time Ben is having jejunal feeds 24 hours but his medicines are still given into his stomach with some milk to protect his sensitive tummy.

We decided to have the tube put through Ben's current gastrostomy to see if this type of feeding would work for Ben before having a permanant tube placed.  The downside of keeping the tube this way is that each time the balloon bursts Ben has to go to hospital to have the tube replaced, usually under anesthetic.

Ben has had a good result from this feeding tube change, has less reflux and has had a good weight gain.



In December 2009 Ben had a jejunostomy. Jejunal feeding has been a sucess for Ben but the gastro-jejunal button leaked a lot and anytime the balloon failed it had to be replaced under anaesthetic.  Now that the jejunal feeding has been tried and tested we opted for Ben to have a permanant jejunal peg, this peg should last two years so although it was a fairly long operation in the long run it means less trips to theatre and less anaesthetics for Ben.

The surgery went well and Ben was in hospital for one week.  He now has a gastrostomy button on his tummy which we still use to put his medicines in, a little milk and remove excess air and also a jejnunal peg which is attached to his feeding pump through which he receives a slow continuous feed day and night.  Currently this regime is working well for Ben.

surgical links

I have found the Gt Ormond Street Children's Hospital website useful when wanting information about surgery http://www.ich.ucl.ac.uk/gosh_families/information_sheets/





Last Updated on Thursday, 24 December 2009 06:59