Sturge Weber Syndrome Baby with port wine stain birthmark suffered from

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

A mother dubbed a “monster” by cruel trolls after lasering her baby’s birthmark to help him took another hit after her little boy suffered a severe seizure in March.

Brooke Atkins, 33, gave birth to baby Kingsley Colvin in February 2022, who had a large birthmark with a “port wine” patch that covered half of his face and has been linked to Sturge-Weber syndrome.

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

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

“It was the longest we had waited for an ambulance – 20 minutes – but luckily he was slowly starting to breathe again. When paramedics arrived we waited for someone to pick up my daughter – what we didn’t know was that Kingsley was still having seizures at that time,” Brooke told FEMAIL.

Little Kingsley started turning blue as his oxygen levels continued to drop despite wearing an oxygen mask, and when they got to the hospital it had been an hour since he started convulsing.

The race against time continued and the seizure worsened as Kingsley’s body shook uncontrollably.

Doctors finally got the seizure under control after an excruciating two hours, and for a moment Brooke feared losing her precious baby.

Last month, 14-month-old Kingsley suffered a seizure during a two-hour nap.  He was diagnosed with Sturge-Weber Syndrome (SWS) which caused epilepsy (pictured today).

Last month, 14-month-old Kingsley suffered a seizure during a two-hour nap. He was diagnosed with Sturge-Weber Syndrome (SWS) which caused epilepsy (pictured today).

Mother-of-two Brooke Atkins (right) called the ambulance in despair when emergency medication didn't work

Mother-of-two Brooke Atkins (right) called the ambulance in despair when emergency medication didn’t work

Brooke sat on the emergency room floor and cried after doctors said Kingsley would need critical care to help him breathe.  After two hours, the doctors managed to stop the seizure (picture in the infirmary)

Brooke sat on the emergency room floor and cried after doctors said Kingsley would need critical care to help him breathe. After two hours, the doctors managed to stop the seizure (picture in the infirmary)

When the doctor arrived at the Gold Coast University Hospital emergency room, the doctor took one look at Kingsley and “knew right away that he was still having seizures.”

“His seizure can look so mild with subtle hand and foot twitches — they took him to the resuscitation room and tried to give him two more batches of his rescue meds but it didn’t work,” Brooke said.

“The next thing they could do was cannula the next batch of rescue medication in hopes that it would stop the seizure.

“Unfortunately, by that time his focal seizure had turned into a generalized seizure and his whole body was convulsing.

“As they struggled to get the cannula in, his breathing became increasingly difficult.”

Brooke sat on the emergency room floor and cried after doctors said Kingsley would need critical care to help him breathe.

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

He then had to have 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) shortly after birth and has been suffering from epileptic seizures since October last year.  Glaucoma can also cause blindness and other disabilities

Kingsley was diagnosed with both glaucoma and Sturge-Weber Syndrome (SWS) shortly after birth and has been suffering from epileptic seizures since October last year. Glaucoma can also cause blindness and other disabilities

“Our neurologist has since created a structured plan with the emergency services to prevent this from happening again,” Brooke said.

“She also made a plan with the ER, Pediatric Ward and ICU at Gold Coast Hospital which is amazing!”

“Unfortunately, we’ll have to deal with it for a lifetime, or at least for the next few years.”

Close ongoing maintenance of Kingsley’s condition is required as there is no cure.

Kingsley was diagnosed with both glaucoma and Sturge-Weber Syndrome (SWS) shortly after birth and has been suffering from epileptic seizures since October last year.

Although he often has seizures three times a week, they have never been as bad as during the last month’s ordeal.

Glaucoma can also cause blindness and other disabilities. While the port wine stain itself is not life-threatening, the seizures can be fatal.

Brooke says Kingsley has an average of two to three seizures a week and if it lasts longer than five minutes he needs to be taken to the hospital (pictured five months old).

Brooke says Kingsley has an average of two to three seizures a week and if it lasts longer than five minutes he needs to be taken to the hospital (pictured five months old).

“We can’t tell when he’s about to have one, but if his hands and feet are twitching slightly, we’ll put him on rescue medication,” Brooke said.

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

Already this year, the baby was hospitalized six times.

Despite the trauma, Brooke says Kingsley is the “happiest baby” who always has a smile on her face.

Can Laser Treatment Help Reduce Port-Wine Stains?

Laser therapy is most successful in removing port-wine stains. It’s the only method that can destroy the tiny blood vessels in the skin without causing major damage to the skin.

Lasers (highly concentrated light energy) can make many birthmarks much brighter, especially if the birthmark is on the head or neck. Dermatologists or plastic surgeons usually perform multiple treatments with a pulsed-dye laser.

The laser targets the pigmentation in the stain and fades it. Multiple treatments can greatly fade the mole.

Laser treatment often begins in infancy, when the spot and blood vessels are smaller and the birthmark is much easier to treat. However, laser treatments can also help older children and adolescents

Source: Kids Health & Mount Sinai

Pictured today: 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 difficult decision to get laser resurfacing for his birthmark when he was five months old – which doctors advocated – to improve his health and reduce the severity of side effects.

Choosing Laser was one of the “hardest decisions” she’s ever had to make.

“I was scared… scared of making the wrong decision and I questioned everything,” she said.

Brooke wondered if the laser would damage Kingsley’s skin, but specialists assured her it just “feels like a rubber band” that snaps when touched.

She also knew of the potential health risks that would follow if nothing were done about the mole – which is why she chose lasers.

“The thing about port wine stains is that they’re progressive, meaning they change and get darker over time,” she added.

Brooke and his partner Kewene opted to have Kingsley's birthmark laser treated to improve his health - which doctors have advocated 1680746403 516 Sturge Weber Syndrome Baby with port wine stain birthmark suffered from

Brooke and his partner Kewene opted to have Kingsley’s birthmark laser treated to improve his health – which doctors have advocated

The laser seems to have helped improve Kingsley’s overall health, but unfortunately Brooke has been labeled a “monster” and “abuser” by cruel trolls.

One person on TikTok said, “Don’t think I could laser my baby.”

Another commented: “This mole is barely visible what you are doing to it is horrible it’s more for you than him.”

“Brainwashed mom makes her child unsafe as soon as it comes out of the womb,” commented another user.

“Why is everyone supporting this,” commented another.

While others were quick to support them.

One person said: “You are the mother and you know what is best for him.”

The laser seems to have helped improve Kingsley's overall health, but unfortunately Brooke has been labeled a

The laser seems to have helped improve Kingsley’s overall health, but unfortunately Brooke has been labeled a “monster” and “abuser” by cruel trolls

Speaking of the reception she received online, Brooke said: “Honestly, once I started reading the negative comments I sat there and cried for a good half hour.

“I felt a whole load of guilt and it made me question my decision, even though I knew I was doing the right thing, the cruel words were still playing in my head.”

Brooke said that while she initially took the negative comments to heart, she also noticed the support from other parents.

“Thankfully for every negative comment there were 100 positive ones, so it helped a lot!” She said.

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

The family have stopped laser treatment for the time being but will start again in the coming months and are amazed at Kingsley’s progress every day.

Brooke decided to have the mole removed safely as it can be dangerous and bleed Kingsley is being treated

Brooke decided to have the mole removed safely as it can be dangerous and bleed

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

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

Brooke also previously shared some additional details about port wine birthmarks.

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

“Once a port wine stain has reached this stage it is often very difficult to treat and the laser has little effect as the skin is already far too damaged.

“The only way to treat a port wine stain is with laser treatments, and the most effective laser for this is called a pulsed dye laser.

“When he was first born we were referred to the Dermatology and Vascular Unit at Queensland Children’s Hospital where the initial treatment was organized and a full explanation of why lasers would be important.

The purpose of laser treatments is not to “remove” the mole, but instead to keep the skin healthy to prevent further damage to the area.

On the mend: Kingsley with mom Brooke, dad Kewene and sister Amarni, two

On the mend: Kingsley with mom Brooke, dad Kewene and sister Amarni, two

What is a port wine stain birthmark?

A port wine stain is a birthmark caused by the overdevelopment of blood vessels under the skin.

The change in blood vessels is caused by a genetic mutation that occurs before a child is born and persists for the rest of a person’s life — although the severity varies from person to person.

Port wine stains begin as flat red or purple spots and can become more raised, voluminous, and darker over time.

They can appear anywhere on the body, but 65 percent of them occur on a person’s head or neck.

About three babies in 1,000 have a port wine stain, and they’re more common in girls than boys, although the reason for this isn’t known.

Treatment usually involves laser treatment to remove some of the dark color from the mark, or to cover up the discoloration with a special type of makeup.