Home » Large port-wine stain in baby soon turns out to be Sturge-Weber syndrome

Large port-wine stain in baby soon turns out to be Sturge-Weber syndrome

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Large port-wine stain in baby soon turns out to be Sturge-Weber syndrome

Rachael Hoelz from Wales will give birth to her third child, Rosie, in October 2021. The baby is born with a large port-wine stain on his face. The “spot” extends from the right cheek over the eye and forehead to the hairline. But the mother doesn’t worry at first.

Baby Rosie suffers from Sturge-Weber Syndrome

But then the doctors assume Sturge-Weber syndrome, since the birthmark on the child’s head is only one-sided. In Sturge-Weber syndrome, red blood cells build up in the brain and face.

Finally, a magnetic resonance imaging brings certainty. Rosie suffers from the syndrome. She now has mild epileptic seizures for the first time and has increased pressure in one eye.

Mum Rachel tells Britain’s Daily Mail: “It’s basically like a birthmark on her brain. The doctors told us that all people with this syndrome are affected differently and they couldn’t tell us what would happen to Rosie, we should just wait and see how she gets older.”

Rosie suffers multiple epileptic seizures

Parents’ concerns are growing. In October 2022, shortly after her first birthday, Rosie has her first real epileptic fit. The child has to go to the hospital, but can go home a little later.

The seizures repeat themselves. This is one of the reasons why the doctors give the parents emergency medication. Rachael explains, “For the first time, the paramedics should administer this when they arrive because in some cases it can slow the heart rate and we don’t know how she will react.”

She then had the worst seizure in March of this year. Rachael describes the bad minutes: “Her head was blocked and she had a generalized whole body seizure, during which she could hardly breathe at times.”

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Drug brings salvation to Rosie and family

But then the redemption for Rachael and her husband. From now on Rosie gets a new drug twice a day. This will bring the seizures under control.

But Rosie still attracts many people’s attention with her large “mole”. First, the family has a problem with the looks and words of others. But now Rachael can ignore this and is just happy that her daughter can lead a healthy life.

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