Hugo’s story

Article from 2019/2020 Impact of Giving Annual Report

Kait Pfeiffer wants everyone to meet her 16 month old son Hugo so that they can see that while he may look different, he has a gorgeous smile, a twinkle in his eyes and is just a cheeky, brave and strong boy.

At six weeks old, Hugo was diagnosed with Sturge-Weber Syndrome, a rare congenital condition that can affect children’s skin, brain and eyesight. For Hugo, the most conspicuous characteristic of the condition is his port wine stain that covers the left side of his face.

“I want to get Hugo’s face out there so people can see that he is different, but that it’s ok to be different; the more awareness about port wine stains, the less people stare,” said Kait.

Hugo is the youngest of Kait and husband Dane’s four children and when he was born, they knew it was going to be a bit chaotic with four children under five. What they didn’t expect was the steep learning curve and numerous medical appointments in the weeks and months following Hugo’s birth.

“After Hugo was born it was a bit of a blur. I knew a little about port wine stains as my niece has one on her arm and I knew there could be a possible underlying health condition linked to Hugo’s brain, due to where the birthmark was on his face,” said Kait.

Hugo was originally assessed in Adelaide, undergoing an MRI to check his brain function, which confirmed he would likely go on to suffer seizures by the time he was one; an eye test to check for glaucoma, which was clear; and at just a few weeks old, Hugo was referred to the RCH for treatment for his port wine stain.

“With support from my obstetrician and Hugo’s paediatrician I did a lot of research about port wine stains, which showed the earlier treatment begins, the more effective the outcome,” said Kait. “For me as a mum, I thought my hands are tied when it comes to Hugo’s brain and any potential issues, but if I can help his stain, I will.”

When Hugo was five weeks old, Kait and Dane loaded up their four children into a minivan and drove from their home in the Adelaide Hills to the RCH in Melbourne. It was there that they met dermatologist, Dr Belinda Welsh, for the first time.

“Dr Welsh changed our lives. I’ll never forget it, she was the first doctor who said to us ‘you have a beautiful family and congratulations on Hugo’, rather than immediately looking at his face. She looked me in the eye and said we can help you, we felt like we were at home – we started laser treatment there and then,” said Kait.

Since then, Hugo has been undergoing regular vascular laser treatment to help lighten his birthmark. He had his final intensive, early intervention treatment in February, and he will restart treatment at around 18 months old when he will go under a general anaesthetic. That will allow the Dermatology team to focus the treatment around his eye area.

“The care we’ve received at the RCH has been incredible. The team are kind, empathetic, compassionate, gentle and quick,” said Kait.

“I can’t say the treatments have been nice, and I get really anxious in the lead up, but for me, as a parent you have to weigh it up. The treatment isn’t just about cosmetics, it’s also about looking after his skin and helping to care for the vessels in his skin. Over time, if left, Hugo’s skin would darken, harden and tighten. His eye would bulge, his lip would bulge, and nodules would form underneath his skin causing lumps.”

Kait was also worried about what would happen when Hugo started school.

“I’m a teacher, so one of my biggest fears is for when Hugo started school as I know how kids can be unintentionally cruel. Hugo doesn’t look like a normal toddler, and so I just wanted to do everything I could do to help him,” said Kait.

“I intend to raise four resilient children but no one should have to deal with body shaming because they have a physical difference. Hugo will be resilient because of this, but he also shouldn’t have to listen to anyone being mean or shaming him.”

Hugo has so far responded well to treatments, with his port wine stain having already been significantly lightened. He will undergo nine more treatments before starting school and will then be seen yearly by the Dermatology team.

“The technology the RCH is using is state of the art, so it was a no brainer for us to travel over. Even though it’s expensive for us to travel, by the time we factor in airfares and car hire, we knew that early intervention was key,” said Kait.

“And all of my kids love going to the RCH, the whole family love it. The fish tank, the sculpture in the main foyer – they love visiting and coming to Melbourne. The RCH feels like home, even though we are from South Australia.”

While Hugo has had some medical setbacks, including a recent eight week stay in hospital in Adelaide due to his seizures, and ongoing rehabilitation due to some paralysis on his right side, Kait said Hugo is already demonstrating his determination and strength.

Kait has a message for everyone who sees, or comes into contact with her littlest love, Hugo. “Please look beyond the red skin on Hugo’s face, because underneath that birthmark is a gorgeous, brave, strong and very loved little boy,” said Kait.