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Meet Ben

Ben’s mum, Claire, found out he had spina bifida at her 18-week scan during pregnancy.

“I have a cousin who has spina bifida but it never entered my head that I could have a child with the same condition,” Claire said. “It was such a big shock.”

Claire continued to have scans every four weeks to monitor Ben’s progress. He had a large lesion on his spine when he was born and had surgery on his back within 24 hours.

The effects of spina bifida vary according to the type, location and severity of the condition. Generally, defects higher on the spine produce a greater risk of paralysis and other debilitating complications.

Ben’s lesion is at the base of his spine, so Claire hopes he will be able to walk very soon, and be reasonably mobile throughout his life. Like many people with spina bifida, Ben faces difficulties with bowel and bladder control.

Ben also has hydrocephalus, a build up of spinal fluid within the brain that requires a shunt to drain it. About 90 per cent of children with spina bifida have hydrocephalus. Ben’s shunt was inserted when he was just three weeks old. He had an MRI scan at one year of age which showed a build up of fluid in his brain, so the shunt was changed.

So far, Ben has experienced five operations to which he has responded well. (One operation was for tonsils, adenoids and grommets - not related to spina bifida.)

Little Ben also has a club foot. This has been corrected with castings to move his foot into its correct position. His Achilles tendon has also been lengthened.

“After all the initial procedures, we had to come back to the hospital for checkups every three months, and now it’s every six months,” Claire said. “For the first few months of Ben’s life, I felt like I lived at the RCH. Although there have been some difficult times, Ben bounces back easily, is cheerful, placid and takes it all in his stride.

“Sometimes I wonder if he realises how different he is from other kids. He has to wear special shoes at night to prevent his feet turning in again, and just recently he’s started asking where his baby brother’s shoes are!”

3 Comments

  1. Denise on Tuesday 12 October, 2010

    HI Claire. I also have a son with spina bifida and hydrochephalus and sounds very similar to Ben. My Chris did walk at 2 years and 2 months old. Chis is now 11 and doing very well - he doesn't need his shoes any more - so this is much hope for you all. Congratulations on doing a fantastic job and when yu are feeling dow, just remember there are others just like you and there is light out the other side. All the best to you, Ben and your family.

  2. Justine on Tuesday 12 October, 2010

    Best wishes to you and your family, we weren't so fortunate with our first born who we were able to say good bye to after she was born. It is a long road to travel and I'm glad to hear of such a beautiful boy 'bouncing' around in this world.

  3. Sheridan on Sunday 10 October, 2010

    I hope Ben continues to bounce back from whatever the future holds. Wishing you all the very best in your journey.

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