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Vein of Galen Malformation - hand hold please

29 replies

NC9876543211 · 29/09/2021 12:04

And prayers please, hundreds of prayers if you are that way inclined.

I had my 20 week scan yesterday - actually was a rescan as baby was so wriggly at 20 weeks that they couldn't get all the data necessary.

Data required came back fine and sonographer said 'let's just have a check over rest of baby to make sure all ok' - of course I thought fine.

She then said she had seen something on baby's brain that didn't look quite right and brought in another sonographer as a second opinion who agreed.

I was booked in for a scan with a consultant this morning at 9am who has confirmed that likelihood that baby has vein of galen malformation - a very very rare condition, especially when diagnosed at this stage in pregnancy, and overall only 1 in 1 million chance of having the prognosis. I am that one.

It's not looking good. I have to go for an MRI on Friday morning and then will be referred to GOSH for specialist care. It is likely that even if I decide to carry on with the pregnancy it will fail due to heart failure.

I can't believe I'm fucking writing this. I don't know what to do.

OP posts:
Zzzzzzzzzzzzzzzzzzzzz · 15/10/2021 19:35

I'm really sorty to read this. Utterly devastating news Flowers

somuchcoffeeneeded · 15/10/2021 19:40

I’m so sorry and thinking of you. Sending strength. X

Lougle · 15/10/2021 21:40

I'm so very sorry.

Dontknowwhatsnext · 15/10/2021 21:45

I am so sorry. Flowers

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