HAVING children is exhausting, but one mum has revealed she is staying up every hour with her little boy because of a rare disease.
Blake gave birth to Charlene Stewart’s baby fissure of the spinewhich affects the spine and is usually present at birth.
3
Because of this, the mother of five children has to hold the child in her arms for most of the day.
Blake was found to have the condition when Charlene, from West Lothian, Scotland, was 16 weeks old pregnant.
The 34-year-old girl was told that she could to stop her pregnancy, but she decided to go ahead and have Blake operated on as soon as he was born.
In spina bifida, the spine and spinal cord do not develop properly, leaving a gap, and this is repaired by surgery.
Little Blake had to undergo seven more operations and spent three months in the hospital.
He then managed to get a shunt in his spine and needs to be moved regularly as he has a catheter in place.
Talking to EdinburghLiveCharlene said she knew that no matter what challenges Blake faced when he was born, they would love him and do anything for him.
She said: “I have to move him every hour of the night so he doesn’t get bedsores because he can’t move on his own.
“The muscles in his legs are only partially developed, so he can lift his legs, but he doesn’t have the strength to lower them again.”
To find out more about the condition of her little one, the mother joined a Facebook support group.
This is where she said she learned about spinal stimulation that could help Blake develop his muscles.
She explained that many families in the group had done this, with some saying they had seen “tremendous improvements”.
Charlene said this is very important as many of these parents have been told their children will never be able to walk again.
She added that it gives her great hope.
What is spinobifida?
The NHS describes spina bifida as a ‘neural tube defect’.
Doctors believe it is caused by either genetic or nutritional factors (such as a lack of folic acid) or because the neural tube that forms the baby’s brain and spinal cord is not fully developed.
There are three types of spina bifida, but melomeningocele remains the rarest and most serious form of the disease.
One in 1,000 pregnancies results in a spinal or brain defect, such as spina bifida, and this is usually detected at a scan at 18 weeks.
While spina bifida is usually detected during an ultrasound scan and can be treated with surgery, babies are often at risk of developing hydrocephalus.
This accumulation of fluid in the brain causes brain damage and leads to learning disabilities, speech disorders and epilepsy in the long term.
Charlene has five other children with husband Robin, 43, and said holding Blake all the time could be difficult for her other children.
“Before bed is the only time I get a chance to clean or do anything around the house,” Charlene said.
She is currently fundraising for therapy in the US that will help improve Blake’s quality of life.
The fundraiser will also go towards the purchase of vibratory plates and machines to help Blake regain his paralysis and mobility.
So far, £2,170 of their £5,000 target has been raised.
Charlene added: ‘Blake is 6 months old and has been through so much already.
“He has a huge task ahead of him.
“He is so brave and always has a smile on his face, which makes me very proud.”
She added that hopefully one day her little boy will prove the doctors wrong and be able to hold on.
3
