Brooke held her baby boy Kingsley down in anguish, despite having to fight back the tears.
The mum of two couldn’t bear to look at her child in distress so she ran out of their room. Kewene was left to hold back her squirming son.
WATCH THE VIDEO ABOVE: Brooke share Kingsley’s journey with PWS
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“It’s only two minutes, but it’s two minutes of hell,” Brooke tells 7Life.
Kingsley has the port-wine stain, a permanent maroon birthmark that covers the left side of his face.
When he was just a few months old, Brooke arranged laser treatment to lighten the facial discolouration – and began documenting her baby’s journey online.
But the Queensland mother was labelled “a monster” for putting her son through the treatment.
“People thought I was doing this purely for cosmetic reasons and that just broke my heart,” Brooke says.
“I would never put my kids through something that isn’t medically needed.”
The mother’s agonising choice wasn’t simply because Kingsley’s PWS was “just a birthmark”.
His ‘strawberry kiss’ is also growing on his brain.
‘I couldn’t see anything’
Brooke recalled her pregnancy as quite routine.
However, as her baby was removed from her uterus by C-section, the doctor’s expression was one of concern.
“My partner just told me he was so cute but the doctor was worried about something on his face,” Brooke says.
“But they brought him over to me and I couldn’t see anything.”
As Kingsley rested on her chest, the mum didn’t know how to feel as the doctor began requesting specialists and scans for the newborn straight away.
“I thought maybe it was just a bruise from where they pulled him out but she told me they didn’t touch anywhere near there,” Brooke says.
“I didn’t think anything of it, but they were really worried.”
The family was then taken into the ward where specialists discovered that Kingsley may have had a PWS.
“It will progress over time, it will darken and could become lumpy,” the mum says.
“It’s extra blood vessels that have been brought to the surface, so if he scratches his face he will need to go to hospital to stop the bleed.
“At first we didn’t care about the birthmark.
“But then they started explaining he could have seizures and could be blind.
“My heart just sank. When they (doctors) walked out, I instantly started crying.”
Brooke had just recovered from giving birth and needed more tests to confirm her diagnosis. Kewene took Kingsley to the MRIs, ultrasounds, and eye exams.
As the week unfolded, the tiny boy’s condition was becoming clear to the specialists.
His once-lightly-shaded face had become darkened and his left eye, located at the centre of his birthmark, was puffy, swollen and hazy.
His first MRI was clear. However, doctors were concerned about his vision in his left eye.
“It was really, really hard,” Brooke confesses.
“You see all of these mums with their babies saying, ‘Look he smiled’ and I am here just worried about whether my son will have seizures and be blind.”
Facebook community
Kingsley was diagnosed with Sturge Weber syndrome (SWS) after more scans revealed that he had a rare vascular disorder called Sturge Weber syndrome (SWS). This causes abnormal blood vessels in the brain.
The possibility of blindness, developmental delays and seizures became a reality for the family.
Brooke discovered many PWS and SWS Facebook pages when she was searching for top-level information.
She joined them and posted her story to seek help from others in similar situations. She received a flood of love from strangers.
New friends came to Brooke’s aid, suggesting a doctor who provided laser services to help.
It is recommended that children under 12 months old receive the treatment. However, some say it is cosmetic.
“Other parents have chosen not to because it is so hard to put your child through it,” Brooke says.
“But then I had read about children who have a port wine stain, and who didn’t get it lasered, who wish they did, because they have been bullied.”
Kingsley’s PWS position meant that it could expand and grow across his entire face, potentially affecting his vision in both eyes.
Medically, laser treatment is recommended.
Kingsley was ready for the laser session four weeks later.
“The moment he started crying, I ran out. I just felt like a horrible mum to put him in pain,” Brooke says.
Brooke was brought back to the room by a nurse two minutes later. The lasering was finished.
“He was asleep, I couldn’t believe it,” she says.
“But he looked burnt, those tiny dots all over his face – it was hard to see.”
The next morning, Kingsley’s face was swollen and slightly tender but a few days later the birthmark had almost completely disappeared.
As Brooke took to social media to post about the treatment’s success, she was inundated with nasty comments.
“Someone told me to put my son down,” Brooke heartbreakingly reveals.
“At first when I got the comments, I sat there and I cried. They were horrible.
“Some people even told me I was an abusive and a bad mother – they (comments) hurt.”
Raising Kingsley
Brooke has moved past the “keyboard warriors” and focuses on raising her boy to be proud of who he is.
“I want to build him up to be confident,” she smiles.
“I want him to be proud of his birthmark.”
She began to ignore the online trolls and continued embracing Kingsley’s PWS journey.
Kmart Australia then messaged the mother via Instagram, asking if they could use one her photos to promote Kingsley’s Kmart outfit.
“I was so happy he was being accepted,” she says.
“And for the port-wine stain community (it shows) that you can be yourself and not be judged.
“I just love that Kmart are being so inclusive.”
Educating ‘trolls’
Kingsley hasn’t had a seizure to date and has also been hitting all his milestones.
His parents believe that the SWS won’t have any impact on his development.
Two more laser treatments are scheduled for the little boy in the next month, and an annual visit after that.
Brooke is now working to educate the trolls hiding behind their community.
“For every one negative comment I get, there are a thousand positive ones,” she says.
“And almost every day I am thanked by other parents or people with port-wine stains for speaking – and that makes it all worth it.”
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