Hi everyone

Anencephaly
#1

I recognise a few names here!! LOL!! Zarey, wherever you go, I go!!!

Good to have yet another place to talk about our Angels.

For those that don't know me I'm Yvonne and I live in the UK. My first daughter Ceilidh (pronounced Kayley) was diagnosed with anencephaly at 17 weeks. I carried her to term, but sadly she was born still at 42 weeks. She was born on the 3rd September 1994. I now have 4 more children, all perfectly healthy. Elijah-Mae (2nd Jan '96), Rheiya (25th Jan '98), Lucas (20th Oct '00) & Jaidyn (18th July '06), but Ceilidh will always be my firstborn and I'm proud to say I'm a mum of 5.

Hope to get to know those of you that I don't know!!

Love Yvonne xxx

#2

I had 4 babies the first a boy though my memory from the is foggy I had a break down he lived for a few short hours... William Wyeth... then my son was born, he is now 12 mostly health though he was recently diagnosed with crohns... then my next baby was born a girl look so similar to my teeny little Will and just made a few gasps and gurgles but no more this sweet girl Willow Jane just slept...my heart broke. Then I had my sweet girly girl Grace she is one of the strongest people I know she's 9 and smart in books and the world...

in 2005 I was diagnosed with crohns disease I think my crohns is related to the anencephaly births I had ...I smoked pot during the 2 pregnancies of my healthy babies but not during Wills or Willows ... I believe the use of Marjiuana helped me injest and digest enough of the need nuturients... I have so wanted to talk with others who have lived with this experience and here you are I am eager to chat....Jenn

#3

Zarey, where you afraid of getting pregnant after having a child with anencephaly? I have a 3 year old girl, and my second child, Kamia, was born with anencephaly almost 2 years ago. Now my husband wants to try it again, and I am terrefied.  I’ve had panic attacks lately. In all honesty I don’t know what to do, on the one hand I would love to have another baby, but just the thought of something going wrong drives me nuts.

#4

Nice to 'meet' some new people, but I wish it was under different circumstances.

I'm not sure about the pot smoking, but I guess anything is possible! My diet wasn't exactly brilliant when I fell pregnant with Ceilidh (I was working in a hotel and living with a lot of other staff, very much like a student community, so you can guess what the diet was like!!). With my other pregnancies, I became a diet freak, making sure I ate fresh fruit & veggies every day etc, etc. I was also given high dose folic acid (5mg) by my doctor before coneiving 3 of my subsequent pregnancies (Jaidyn, my youngest was unplanned so I was in a blind panic when I found out I was pregnant without the 5mg of FA, but I got it from my doctor as soon as I found out)

I was terrified of it happening again, but I knew if I waited too long to have another baby I'd be too scared to even try, so 3 months after I lost Ceilidh I went to my doctor for the high dose of FA and 3 months later I was expecting my second child. I was given early scans and anencephaly was ruled out early on, but I never totally relaxed until I held my perfectly healthy screaming baby in my arms. It had been the same with all my other pregnancies too, I just can't relax 100% until I'm holding my baby, no matter how many times I'm told that all is well.

It's a scary journey to be on when you do get pregnant again, but it's one that is worth it.

love Yvonne xxx

 

 

#5

I too was very scared during my other pregnacies but from what I understand the likely hood of happening twice is great unless there’s an underlying medical condition which was my problem I was absorbing what the babies needed because of my crohns disease which at the time I wasn’t diagnosed with.

As far as the pot smoking. I believe it truely was what help me have healthy babies because it was the only thing that stopped me from constantly vomiting and still is. With crohns I feel like I have morning sickness even when I am not prego and I vomit often. If docs would have know I had crohns at the times I was prego they could have help with other med treatments but my diagnosis came just a few years ago I was near death. I know wonder about the relation between neurotubal defeacts and crohns disease.??? hmmmm My GI and surgeon definately believe that the pot smoking sustained me well for such a seriously aggressive case of crohns.

#6

I too was very scared during my other pregnacies but from what I understand the likely hood of happening twice is great unless there’s an underlying medical condition which was my problem I was absorbing what the babies needed because of my crohns disease which at the time I wasn’t diagnosed with.

As far as the pot smoking. I believe it truely was what help me have healthy babies because it was the only thing that stopped me from constantly vomiting and still is. With crohns I feel like I have morning sickness even when I am not prego and I vomit often. If docs would have know I had crohns at the times I was prego they could have help with other med treatments but my diagnosis came just a few years ago I was near death. I know wonder about the relation between neurotubal defeacts and crohns disease.??? hmmmm My GI and surgeon definately believe that the pot smoking sustained me well for such a seriously aggressive case of crohns.