A mum has opened up about how her baby’s seemingly innocent birthmark was a sign of something far more sinister.
Rachael Holz and her husband Sam Morgan’s third child Rosie was born in October last year with a pink mark stretching from her right cheek, over her eye and up her forehead to her hairline.
The doting parent, from Wales, were unconcerned with the port-wine stain, but doctors diagnosed Rosie with a rare neurological brain condition known as Sturge-Weber Syndrome.
Rosie has suffered a series of terrifying epileptic seizures and had a ‘constant battle’ with pressure on her right eye due to the syndrome, but no one knows how it will manifest as she gets older.
The 27-year-old mum said strangers often stop and stare at Rosie and make unintentionally rude comments about her birthmark, but she has learned to ignore the negativity.
Rachael was not the slightest bit bothered when she first laid her eyes on her daughter in the delivery room.
‘I just thought she looked beautiful as she was, the birthmark was bigger than I had expected it would be when I was told she had been born with a birthmark,’ she told FEMAIL.
‘But I primarily just thought she was perfect.’
However, doctors put a damper on her joy as they were concerned the birthmark could be an indicator of Sturge-Weber Syndrome, which causes extra red blood cells to grow on her brain and face.
‘Essentially like a birthmark on her brain,’ Rachael explained. ‘The fact that the birthmark was one sided, covered over her eye and into her scalp could be indicators of this syndrome, but they said they would only be able to confirm via an MRI scan.’
And when Rosie was six months old doctors confirmed her parents’ worst fears – she had Sturge-Weber and no one could predict how it would affect her in the future.
‘They told us that all people with this syndrome are affected differently and they couldn’t tell us how Rosie could be, we would have to wait and see as she gets older,’ Rachael said.
Rachael’s mind started to race as learned more about the condition and its worst case scenarios including bulging eyes from glaucoma, developmental issues and terrifying seizures with which she had no experience.
‘The thought of her having seizures felt really heavy and frightening. I also found that because it affects all people differently and you don’t know how it may affect them, you can fall down a rabbit hole of worrying about everything,’ she said.
‘Will she ever walk or talk? Is she going to have seizures? If so, are we going to be able to control them? Will she ever be able to drive? Will she lose the vision in her right eye?
‘The things you can worry about are endless, as it affects everyone differently,’ the mom said.
