Sturge-Weber Syndrome: Baby with port-wine stain birthmark suffered seizure for two hours

A mum called a ‘monster’ by cruel trolls after lasering off her baby’s birth mark to help him was dealt another blow after her little boy suffered a serious seizure in March. 

Brooke Atkins, 33, gave birth to little Kingsley Colvin in February 2022 who had a large ‘port-wine’ stain birthmark covering half his face which was linked to the syndrome Sturge-Weber Syndrome.

It was also a sign of glaucoma and brain abnormalities that caused severe epileptic seizures. 

Last month the mum-of-two, from the Gold Coast, frantically called the ambulance when Kingsley had a 15-minute seizure during an afternoon nap and stopped breathing momentarily. 

‘It was the longest we had waited for an ambulance – 20 minutes – but thankfully he slowly started breathing again. When paramedics arrived we waited for someone to pick my daughter up – what we didn’t realise was Kingsley was still seizing in this time,’ Brooke told FEMAIL.

Little Kingsley started turning blue as his oxygen levels kept dropping despite wearing an oxygen mask and by the time they arrived at the hospital it would’ve been an hour since he start seizing. 

The race against time continued and the seizure worsened with Kingsley’s body shaking uncontrollably. 

Doctors eventually got the seizure under control after a distressing two hours, and for a moment Brooke was fearful of losing her precious baby.

Mum-of-two Brooke Atkins (right) frantically called the ambulance when rescue medication wasn’t working 

Brooke sat in the floor of the emergency room and wept after doctors said Kingsley will require critical care to help him breathe. After two hours doctors managed to stop the seizure (pictured in the hospital ward)

Once arriving in emergency ward at Gold Coast University Hospital, the doctor took one look at Kingsley and ‘immediately knew he was still seizing’. 

‘His seizure can look so mild with subtle twitches of the hand and foot – they rushed him into the resuscitation room and attempted to give him two more lots of his rescue meds but it wasn’t working,’ Brooke said.

‘The next thing they could do was put the next line of rescue medication through a cannula, in hopes it would stop the seizure. 

‘Unfortunately in this time, his focal seizure had turned into a generalised seizure and his whole body was convulsing.

‘As they struggled to get the cannula in, he got worse and worse with breathing.’

Brooke sat in the floor of the emergency room and wept after doctors said Kingsley will require critical care to help him breathe. 

After an hour of waiting, doctors finally came out and told the distraught mum they managed to stop the seizure and Kingsley started breathing better again. 

He then had a CT scan and X-ray to determine and his Sturge-Weber syndrome was determined to be the cause.

Kingsley was diagnosed with both glaucoma and Sturge Weber Syndrome (SWS) soon after birth and started experiencing seizures from epilepsy since October last year. Glaucoma can also cause blindness and other disabilities

‘Our neurologist has since put a structured plan in place with the emergency services to help prevent this from occurring again,’ Brooke said.

‘She also put a plan in place with the emergency ward, pediatric ward and critical care unit at the Gold Coast hospital, which is amazing!’

‘Unfortunately this is something we’ll have to deal with for life or at least the next few years.’

Close ongoing maintenance of Kingsley’s conditions are required, as there’s no cure.

Kingsley was diagnosed with both glaucoma and Sturge Weber Syndrome (SWS) soon after birth and started experiencing seizures from epilepsy since October last year. 

While he often has seizures three times a week, they have never been as severe as the ordeal last month. 

Glaucoma can also cause blindness and other disabilities. While the port-wine stain itself isn’t life threatening, the seizures can lead to death.

Brooke says on average Kingsley has two to three seizures every week and if it lasts for more than five minutes, he needs to be taken to hospital (pictured five months old)  

‘We can’t tell when he’s about to have one, but when he does his hands and feet subtly twitch, then we give him rescue medication,’ Brooke said.  

Brooke also gives Kingsley medication every day – the equivalent of four tablets in the morning and three at night, along with eye drops.

Already this year the baby has been hospitalised six times. 

Despite the trauma, Brooke says Kingsley is the ‘happiest baby’ who always has a smile on his face. 

Pictured today: Despite the trauma, Brooke says Kingsley is the ‘happiest baby’ who always has a smile on his face

Brooke and her partner Kewene, 27, made the tough decision to have go through with laser treatment on his birthmark when he was five months old – which was endorsed by doctors – to improve his health and reduce the severity of any side effects. 

Opting for laser was one of the ‘hardest decisions’ she’s ever had to make. 

‘I was terrified.. terrified about make the wrong decision and was questioning everything,’ she said. 

Brooke wondered if the laser would harm Kingsley’s skin but specialists reassured her it only feels ‘like a rubber band’ flicking at the touch. 

She also knew of the potential health risks that would follow if nothing was done about the birth mark – which is why she opted for laser.  

‘The thing with port wine stains is that they are progressive, meaning they will change and darken over time,’ she added. 

Brooke and partner Kewene chose to have laser treatment on Kingsley’s birthmark to improve his health – which was endorsed by doctors

The laser seems to have helped at improving Kingsley’s overall health but unfortunately Brooke has been called a ‘monster’ and ‘abuser’ by cruel trolls. 

One person on TikTok said: ‘Don’t think I could laser my baby.’

Another commented: ‘That birthmark is barely visible, what you’re doing to him is horrible, it’s more for you than him.’

‘Brainwashed mother making her kid insecure the second he gets out the womb,’ commented another user.

‘Why is everyone supporting this,’ commented someone else.

While others were quick to support her.

One person said: ‘You’re the mom and you know what is the best for him.’

The laser seems to have helped at improving Kingsley’s overall health but unfortunately Brooke has been called a ‘monster’ and ‘abuser’ by cruel trolls 

Of the reception she has received online, Brooke said: ‘Honestly, when I first started reading the negative comments, I sat there for a good half an hour and cried to myself.

‘I had a whole heap of mum guilt and it made me question my decision, even though I knew I was doing the right thing, the cruel words still played in my head.’

Brooke said at first she took the negative comments to heart, but also noticed the outpour of support from other parents.  

‘Thankfully for every negative comment, there were 100 positive, so it helped a lot!’ she said. 

‘I just wish these people had known about the health issues connected to these types of birthmarks before writing these things, that this wasn’t for cosmetic reasons and that as parents, this was the hardest decision we have had to make.’

The family have ceased laser treatment for the time being but will start again in the coming months, and are amazed with Kingsley’s progression every day. 

Brooke decided to get the the birthmark assured off as they can become dangerous and bleed

Kingsley is pictured before having his first laser treatment to remove the port wine stain birthmark

Brooke also previously shared some extra details about port-wine birthmarks. 

‘They can develop a ‘cobblestone’ appearance, with raised bumps, ridges and the risk of vascular blebs, where they dangerously bleed,’ she said. 

‘Once a port wine stain gets to this stage, it is often very difficult to treat and laser barely has any affect, as the skin is already far too damaged.

‘The only way to treat a port wine stain is through laser treatments and the most effective laser for a it is called a Pulsed Dye Laser.

‘When he was first born, we were referred to the Queensland Children’s Hospital dermatology and vascular department, where they organise the first treatment and explain in further details why laser would be important.

The purpose of the laser treatments are not to ‘remove’ the birthmark but instead keep the skin healthy, to prevent any further damage to the area.

On the mend: Kingsley with mum Brooke, Dad Kewene and sister Amarni, two