A devoted Scots mum has told how she needs to hold her baby boy 24 hours a day and move him every hour while he sleeps due to a rare neurological condition.
Charlene Stewart's little boy Blake suffers from spina bifida, which causes defects in the spinal cord and means he is paralysed from the waist down. The 34-year-old mum declined the option of terminating her pregnancy when medics discovered her unborn baby had the condition at just 16 weeks.
As reported by Edinburgh Live, Blake was taken straight from his mother's bedside into emergency surgery to close his spinal canal when when he was born in March this year - meaning Charlene couldn't see him until the next day. After that, the brave youngster had seven major operations and spent the first three months in hospital until he was old enough to get a shunt fitted in his spine.
The condition has left him paralysed from the waist down meaning he needs 24-hour care, relies on a catheter and has to be moved every hour while sleeping to prevent bed sores.
Charlene explained: "I had a private scan at 16 weeks and they could see something was wrong but they couldn’t tell me more. I was sent to the hospital and I was told my unborn baby had spina bifida, they gave me the option to abort my pregnancy - which wasn’t an option for us.
"We also had the choice to go to Belgium and have a surgery to go into my unborn baby's spine and close it up before it developed further. This wasn't ideal and our home had been flooded and covered with mould at the time so we were staying in hotels for around 18 months. If anything went wrong with the surgery I would have been stuck in Belgium away from my kids so it didn't seem like the right option.
"We knew that whatever challenges Blake faced when he was born, we would love him and do anything for him anyway so we continued with the pregnancy."
Spina bifida is when a baby's spine and spinal cord does not develop properly in the womb, causing a gap in the spine. Little Blake has the most severe type of the rare condition; where the baby's spinal canal remains open along several vertebrae in the back, causing the spinal cord and protective membranes around it to push out and form a sac in the baby's back.
Mum-of-six Charlene - who cares for Blake at their home in Fauldhouse, West Lothian, with husband Robin - continued: "When he was born in March, they took him away from me for major surgery to close his spinal cord and put the protective membranes from the sac that had formed on his back, inside of his body.
"This was the start of seven major surgeries over the next three months, we stayed in the hospital all of this time and then two weeks after leaving we were back for another major surgery so Blake could get a shunt to drain the fluid on his spinal cord and brain. Two weeks later we were back again as the shunt had got blocked, so he needed another surgery."
Blake went through many big surgeries in such a small amount of time and Charlene told how medics were convinced that her son would be paralysed after his first operation. None of her other children had any conditions so she could notice the changes in little Blake's developments.
He is seven months now and can't sit up, roll over or go to the toilet on his own and relies on a catheter. Charlene said: "Every hour at night I have to move him so he doesn’t get bed sores as he can't move himself. 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.
"I joined a support group for parents who also have kids with spina bifida and heard about spinal stimulation which could give Blake a better chance at developing his muscles. Some mum's in the group have done it for six months or a year and seen huge progress when they were told their kids would never walk or be active - this gave me a lot of hope."
She added: "This could make a massive difference to Blake's life. Get him moving his legs , gain strength, help with bowel and bladder control and potentially change this little man's life.
"I also have to hold him 24 hours a day because he can't sit or stay by himself, with five other kids it can be exhausting and hard for them too. Bedtime is the only time I get a chance to clean or do anything round the house."
The mum is now fundraising for the therapy that is available in the US and specialist vibrating plates and machines that would help with Blake's paralysis and movement. She said: "The funds raised would go toward the tens machine and three months online learning on how and where to place the pads to get his body moving.
"We might also get a frog machine so he can getting moving on his tummy. All of the consultations cost a lot and the vibration plate costs £5000 and only lasts three years. It's basically to cover costs, we just want to give our little boy a chance."
To find out more and donate to Little Blake's fundraiser, click here.
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