I found my baby boy ‘floppy’ in his cot – doctors found a black mark on his brain
PARENTS were left frantic after finding their baby boy "floppy" in his cot - before doctors noticed a black mark on his bran.
Little Ronnie Kerman suffered a stroke in his sleep, which the devastated family soon learned had been caused by a tumour.
Dad-of-three Phil, of Hull, East Yorks., said: "I went into his room and he wasn't stood up in his crib like he normally is.
"He was laid down and I lifted one arm up and then his leg and they both had gone floppy.
"I laid him down to crawl because he can't walk yet and he couldn't crawl.
"I immediately thought he'd had a stroke and remembered one of those TV adverts and I told my wife Louise to phone and ambulance."
Scans showed "a dark patch" on his brain after being taken to Hull Royal Infirmary on February 2, which turned out to be two cysts and a tumour on his brain.
He was then transferred to Leeds LGI hospital the same day where they confirmed the find and medics revealed that was the cause of the stroke.
Phil added: "Luckily I spotted the stroke symptoms straight away, and even though strokes are more common in adults - parents should know the symptoms."
At only 19 months old he was then diagnosed with an Optic Pathway Glioman and Neurofibromatosis Type 1 - a genetic disorder that causes tumours to form on nerve cells - which has now caused him to become completely blind.
The little boy - one of Britain's youngest to have a stroke - also has Moyamoya disease, which is caused by a blocked artery in the brain.
He had a number of surgeries to tackle the tumour in his brain in 2018 and 2019, but tragically became allergic to his chemo.
Phil and Louise were told to prepare end of life care, before begging doctors to do anything else they could to save Ronnie's life.
Quick-thinking medics put the youngster on Trametinib, a chemo he could take orally, and this worked to shrink the tumour.
"He'll turn six in June now and he can even 'bum shuffle' from the living room to the kitchen, even though he can't see, he knows where he is and where he needs to be, it's fantastic.
"He's a cheeky little boy now, and he is quite independent, he knows what he wants and likes. He enjoys music, everything from nursery rhymes to rock music like AC/DC."
A has been set up to help the family get equipment for Ronnie as he grows up.
What is a stroke?
A stroke is a life-threatening brain attack, which occurs when the blood supply to part of your brain is cut off – without blood, the cells in your brain can be killed or suffer damage.
It can have different effects depending on where in the brain this damage occurs. It can change how you think and feel, and cause speech problems or a weakness on one side.
For some, the effects of a stroke can be relatively minor and will fade quickly, but others can be left with problems that leave them dependent on other people.
Around one in eight people who suffer a stroke die within 30 days, so it is vital to get medical assistance as soon as possible – the sooner somebody is treated, the more likely they are to survive.
Symptoms in children include:
- weakness or numbness on one side of the body
- slurred speech or difficulty with language
- trouble balancing or walking
- vision problems, such as double vision or loss of vision
- sudden lethargy or drowsiness
Strokes in children are extremely rare, affecting around 400 kids in the UK each year.
This can be from the 28th week of pregnancy up to the age of 18.
In adults, 85 per cent of strokes are caused by a blockage and 15 per cent by a bleed in the brain. But in children both types of stroke are equally common.
In Moyamoya syndrome, the main arteries in the brain become narrowed.
To compensate for the reduced blood flow in the main vessels, a network of small blood vessels grows inside the brain.
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Moyamoya means "puff of smoke" in Japanese, referring to the appearance of the abnormal blood vessels in the brain scan image.
It does not always have symptoms, but it can cause headaches and muscle weakness, as well as learning difficulties. It can lead to strokes and TIA in some children.