Mom says discovery of her daughter’s 1-in-a-million diagnosis was ‘accidental’


Ebby Tidswell, 30, was 28 weeks pregnant when she was told her unborn daughter, Rosie, had a Vein of Galen Malformation (VGM), and was told there was a 33% chance the baby would not survive.

Rosie Tidswell was 12 hours old when she was taken to Alder Hey Children's Hospital after being born with a rare condition called the vein of Galen malformation.
Rosie Tidswell was 12 hours old when she was taken to Alder Hey Children’s Hospital after being born with a rare condition called the vein of Galen malformation.

A mother claims the doctor’s discovery of her daughter’s one-in-a-million diagnosis was “completely accidental.”

Ebby Tidswell, 30, was 28 weeks pregnant when she was told her unborn daughter, Rosie, had a Vein of Galen Malformation (VGM).

The rare condition, which occurs during pregnancy, results in abnormal connections between blood vessels within the brain, affecting one in every million children born in the UK each year.

Ebby said it was “completely accidental” that doctors discovered the condition when they did.

She added symptoms that varied greatly from child to child, so the doctors couldn’t tell her what this would mean for Rosie until after she was born.

Ebby, from North Wales, told LiverpoolECHO: “He was measuring a lot so I was sent for a growth scan by myself at my local hospital and that’s when he was picked up.

Rosie was born at Liverpool Women’s Hospital by caesarean section
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Image:

Ebby Tidswell)

Rosie is now a happy three year old.
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Image:

Ebby Tidswell)

“It was completely accidental that he was picked up.

“I remember one of the first times we went to Liverpool Women’s Hospital, they sat us in the room and said there would be three possible outcomes.

“There was a one-third chance she would come out and be absolutely fine, there was a one-third chance she would come out and have developmental delays or pretty severe brain damage and disabilities, and there was a third of a chance she wouldn’t survive at all.” .

Rosie was born at Liverpool Women’s Hospital by Caesarean section.

When she was 12 hours old, she was taken to Alder Hey Children’s Hospital for close observation.

Ebby said: “She was born stable and didn’t really seem to have any problems in terms of the vein of Galen malformation.

“I think it was on day nine that we were told to take her home. We’d go to Alder Hey from time to time just for scans and stuff.”

When Rosie was 10 weeks old, she needed to undergo her first operation after it was discovered that her condition was putting pressure on her heart and she was entering the early stages of heart failure.

The surgery was a success and Rosie has since had another operation when she was six months old.

Rosie is now a “happy, healthy, intelligent” three-year-old.

Ebby said: “They are absolutely in awe of how well he is doing.

“She really doesn’t have any developmental delays, she’s meeting all her milestones.

“She is not wrong in any way, her heart is absolutely fine and they hope that [VGM] it might close on its own because every year it’s been in an MRI it’s getting smaller.

“We are absolutely in awe. I say like a million times a day how proud we are and how grateful we are to have a place like Alder Hey do what they have done for her.”

“She’s just like any other normal three-year-old you’d expect.

“She’s happy, she’s healthy, and in terms of the intelligence that she has, it’s absolutely amazing how amazing she is because obviously we expected developmental delays, but she’s never had anything holding her back, she just keeps going.”

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George Holan

George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.

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