My baby boy’s rare condition that means I have to hold him all day long – and move him every hour at night | The Sun

HAVING children is tiring, but one mum has revealed she is up every hour with her little boy due to a rare condition.

Charlene Stewart's baby Blake has spina bifida, which affects the spine and is usually apparent at birth.

Because of this, the mum-of-five has to hold her baby up for the majority of the day.

It was discovered that Blake had the condition when Charlene, from West Lothian, Scotland, was 16 weeks pregnant.

The 34-year-old was told that she could terminate her pregnancy, but she decided to go ahead, with Blake having surgery as soon as he was born.

With spina bifida, the spine and spinal cord don't develop properly, leaving a gap and this is what the surgery fixes.

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Little Blake had to have seven more operations and spent three months in hospital.

He was then able to get a shunt fitted in his spine and he has to be moved regularly as he has a catheter fitted.

Speaking to EdinbughLive, Charlene said she knew whatever challenges Blake faced when he was born, they would love and do anything for him.

She said: "Every hour at night I have to move him so he doesn’t get bed sores as he can't move himself.

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"The muscles in his legs are only partly developed so he can kick his legs up but doesn’t have the strength to bring them down again."

In order to learn more about her little one's condition, the mum joined a Facebook support group.

It was here she said she learned about spinal stimulation which could help Blake develop his muscles.

She explained that many families in the group have been doing this, with some saying they have seen 'huge improvements'.

This, Charlene said, is a big deal, as many of these parents had been told their kids could never walk again.

She added that this gave her a lot of hope.

What is spinabifida?

The NHS describes spina bifida as a “neural tube defect

Doctors believe it is either caused by genetic or nutritional factors (such as lack of folic acid) or where the neural tube which forms the baby's brain and spinal chord is underdeveloped.

There are three types of spina bifida but melomeningocele remains the rarest and most serious form of the condition.

One in every 1,000 pregnancies results in a spine or brain defect, such as spina bifida, and it is usually spotted around the 18-week scan.

While spina bifida is usually spotted during ultrascans and can be treated with surgery, babies are often at risk of developing hydrocephalus.

This build-up of fluid in the brain cause brain damage and result in learning disabilities, impaired speech and epilepsy long-term.

Charlene has five other children with her husband Robin, 43, and said having to hold Blake all the time can be hard on her other children.

"Bedtime is the only time I get a chance to clean or do anything round the house," Charlene said.

She is currently fundraising for therapy in the US that would aid Blake's quality of life.

The fundraiser will also go towards buying vibrating plates and machines that would help with Blake's paralysis and movement.

So far, £2,170 has been raised of their £5,000 goal.

Charlene added: "Blake is 6 months old and been through so much already.

"He is going to have a massive challenge ahead of him.

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"He is so brave and always has a smile on his face he makes me very proud."

She added that hopefully, one day her little boy will prove doctors wrong and will be able to stand.

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