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anaecephaly

(18 Posts)
max1978 Wed 18-Jul-07 21:40:26

Hi everyone i am pregnant with my 7th baby and have just got the devastating news that my baby problay has the terminal condition anaecephaly ,i have to go to newcastle rvi next week for a more detailed scan but my consultant is quite certain of the diagnosis.I seen my consultant yesterday and he told me the radiographer had seen twins on my scan but one baby had stopped developing quite early ,as you can imagine this is a second blow and i cant understand why we wernt told this at the time.I feel more devastated than ever now as i am just not going to lose one baby i am losing two.I cant understand why i had to lose both babies and dont know how we,re going to get through the next few weeks .Once diagnosed we will have to make the worst decision of our lives and i dont know how to cope .Has anyone else here been through anything like this i will be grateful for all advice.

DarrellRivers Wed 18-Jul-07 21:43:06

Max, what devastating news
I have no experience but wanted to express my support.
How many weeks are you?

max1978 Wed 18-Jul-07 21:45:42

i will be 15 weeks tomorrow

octo Wed 18-Jul-07 21:46:17

You poor thing - thoughts are with you xxx

I have just met a lady whose little boy (6 months) has anencephaly - was diagnosed at 4 months old - not antenatally and they seem to be doing finr - a tough and worrying couple of months but she is very positive.

I hope someone will be along soon with some wiser words

Good luck xxx

Tamum Wed 18-Jul-07 21:46:46

Max, I am so sorry. A poster here called Katyh went through the same thing (anencephaly, not twins as far as I know)not that long ago. I have just searched and her thread is here, I don't know if it will be of any help.

funnypeevesculiar Wed 18-Jul-07 21:46:50

max - no experience, but how awful for you - hope someone more useful will be along soon.

Tamum Wed 18-Jul-07 21:48:16

octo, to be honest that can't be anencephaly- it means no brain basically. Maybe it was a related condition?

KerryMumbledore Wed 18-Jul-07 21:49:19



That is just gut-wrenching. You poor thing.

I had a baby with a condition incompatible to life and I had at least 4 different opinions - one more expert than the other. I was lucky living in San Francisco at the time, home to UCSF - one of the foremost centres of sonography in the world.

Didn't change the diagnosis. It was unanimous.

BUT you have to get more opinions just to be sure. And you know, people have been known to make mistakes on scans before.

So sorry.

max1978 Wed 18-Jul-07 21:49:24

thanks to everyone for their support Tamum thanks i think it might help to speak to someone whose been through it

octo Wed 18-Jul-07 21:51:29

oh sorry - thought it was when they had fluid on the brain.

hester Wed 18-Jul-07 21:52:12

Max, I am so very sorry to hear this. I don't have relevant experience but you might find it helpful to contact ARC (Antenatal Results and Choices) - they're really very good.

I'll be thinking of you xx

Tamum Wed 18-Jul-07 21:52:41

Sorry to correct you octo, just felt I had to here, hope that's alright.

lulumama Wed 18-Jul-07 21:52:43

that's hydrocephaly


am very sorry max1978

i do know of one Mner, who lost a baby to this, she does post on here still now and again...i can point this thread in her direction

am truly sorry x

hester Wed 18-Jul-07 21:53:03

I think that's hydrocephaly, octo.

max1978 Wed 18-Jul-07 21:54:53

anaecephaly is a neral tube defect that is related to spina bifida basically if the tube dosnt close on the bottom the baby has spina bifida if it dosnt close at the top it has anaecephaly,It is a condition incompatable with life because the brain and the top of the head just havnt formed.

max1978 Wed 18-Jul-07 21:57:03

lulamama i would be grateful for that i need to talk to as many people as possible who have experience of this

lulumama Wed 18-Jul-07 21:57:47

i'll do that max1978

x

Habbibu Mon 20-Aug-07 21:08:31

Hi max1978

I'm sorry I didn't see this earlier, and so so sorry that you find yourself in this awful situation. We lost our first baby to anencephaly in 2005, and still miss her. I hope you are as ok as can be (if that makes sense), and wanted to tell you that SANDS is a brilliant resource if you want to talk to people in the same situation (www.sandsforum.org)

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