My son’s port wine stain birthmark grew and invaded his brain – I wish people wouldn’t point and gasp
FOR the last 11 years, mum Louise Stimpson has grown used to complete strangers staring and pointing at her son.
Isaac, from Peterborough, was born with a huge port wine stain birthmark covering the left side of his face, head and body.
But Isaac’s birthmark is more than just skin deep – the tiny blood vessels that cause the coloration have also grown into the 11-year-old’s brain.
In 2020 Louise, 37, made the agonising decision to have the damaged part of her son’s brain “switched off” during a complex 10-hour operation, in a bid to stop his life-threatening seizures.
Now she is speaking out to raise awareness of his condition after enduring a lifetime of stares and comments from strangers.
“He’ll always be a little different to other children and he’ll certainly always look different, but when your child’s been in a coma, you learn to cope with a few stares,” she explains.
“Of course we still get the odd comment when people spot his birthmark, which is very distinctive.
“But these days I’m proud to explain his health issues.”
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Louise, who is also mum to Isaac’s younger brother Theo, eight, had a difficult birth with her firstborn, and at first medics assumed the marks on his face were bruising from the delivery.
Louise remembers: “As he was passed into my arms I thought he was the most beautiful thing I’d ever seen in my life.
“It hadn’t been the easiest of births. I went into labour six weeks early and Isaac was breech, coming into the world bottom first.
“When the midwife handed him up onto my chest she warned me that he was quite badly bruised.
“The left side of his face and body was bright red.
“‘Nevermind’, I thought, ‘it’ll soon fade’.”
Because he was premature, Isaac needed help breathing and feeding so was taken to neonatal intensive care at Peterborough City Hospital.
When he was four days old the doctors took Louise to one side and said they thought he had a port wine stain on the left side of his face, down his left arm and torso, and across both of his legs.
The medics also explained the extra clumps of tiny blood vessels – capillaries – causing Isaac’s distinctive birthmark could also be growing inside his body.
They were referred to London’s Great Ormond Street Hospital for further checks.
Six weeks later he was diagnosed with a rare condition called Sturge-Weber Syndrome, which meant he had extra capillaries growing behind his eyes, in his head and on his spinal cord – a port wine stain on his brain.
He already had glaucoma in his left eye and a curved spine beneath his birthmark.
“The specialists told me the part of Isaac’s brain beneath his port wine stain was basically dead brain tissue,” says single mum Louise.
I had no idea whether he’d still be the same boy when he woke up after surgery
Louise Stimpson
“It was a lot to take in, my mind was reeling.
“Isaac’s birthmark covered half his head – did that mean half his brain wasn’t working?
“I was warned he was likely to have developmental delays, learning disabilities, and that seizures were a possibility.”
And that wasn’t all the family had to contend with.
Out in the world, Isaac’s birthmark provoked some extreme reactions from strangers.
“Whenever I took him out in his pram, people would stop and stare,” Louise remembers.
“One day I was in Morrisons, loading my food onto the conveyor belt at the checkout when a complete stranger, a dad with a child, started staring at Isaac.
“’Oh my God,’ he gasped, pointing at my son.
“I was so upset I ran out of the supermarket – leaving my shopping behind.
“Sadly it became a regular occurrence.
“I’d psych myself up to take Isaac for a walk in his pram, only to end up running home in tears when people pointed or gasped.”
When he was five months old Isaac underwent surgery on his left eye, and days afterwards he had his first seizure and was rushed to hospital.
As Isaac grew from a baby to a little boy, it became obvious that he would be slower to walk and talk.
In time he started at a special education school – where he soon became the class clown.
“He loved counting and cooking lessons,” says Louise.
“He also loved playing Snakes and Ladders and studying the weather – he pretty much memorises the forecast seven days in advance.”
But as the years passed Isaac’s seizures got more and more intense, and often didn’t respond to medication.
On several occasions the doctors had to put him into an induced coma to save his life.
By the time Isaac was nine, Louise feared a seizure would kill him before he grew up.
A 'RADICAL SOLUTION'
That’s when his specialists at Great Ormond Street came up with a radical solution.
They thought they might be able to stop Isaac’s seizures by disconnecting the left side of his brain – the side affected by the port wine stain.
But it would be high-risk.
Although much of that side of his brain was already dead, there was no way of knowing whether his speech or motor skills might be affected.
It was a gut-wrenching decision for Louise to have to make.
“It was my call,” she says. “For weeks I agonised over what to do for the best.
“The operation was risky, but without it, Isaac’s next seizure could kill him.
“In the end, I felt it was in my son’s best interests to give it a go.
“On the day of the surgery, July 9, 2020, I felt sick to the stomach as I walked with Isaac down to theatre.
“I was allowed to stay with him while they put him to sleep, chatting away about his favourite McDonald’s Big Macs and McFlurries to keep him calm.”
After seeing Isaac into theatre, Louise made a video on her phone, updating her friends and family, her voice wobbling with emotion as she described Isaac counting down as he went to sleep.
Over the next 10 hours, surgeons cut away and removed one of the lobes on the left side of Isaac’s brain and disconnected two others, essentially leaving him with only the right side of his brain working.
When Louise was finally allowed to see him in recovery, his head was swaddled in bandages.
“I had no idea whether he’d still be the same boy when he woke up,” she says.
“But the first thing he did was ask when he was going home, and if he could have the McDonald’s I’d promised him.
“I was so relieved.” Thankfully the gamble had paid off.
Isaac has been seizure-free ever since, although he was recently diagnosed with a rare autoimmune disease called myasthenia gravis, which causes muscle weakness.
Louise says: “Now I want to tell the world about Isaac’s condition and help people understand it.
“Recently an Uber driver asked me if Isaac was okay.
“I explained that he had a port wine stain birthmark, and he’d had brain surgery.
“The driver said, ‘Way to go little man,’ and gave Isaac a high five - it was a lovely reaction.
“I wish more people could be like that.
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“I’m telling his story to raise awareness of the difficulties children can face when they look different; birthmarks aren’t always just skin deep.”
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