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Thread: Anencephaly

  1. #19
    xygmum Guest

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    Hi there...

    I lost my darling Savannah Mae on 08/07/06 last year to anencephaly and was induced at 20.2weeks gestation.

    I am fast approaching her 1st birthday, and am currently pregnant with her sister (due in September)

    I took 10x the normal dose of folic acid 2 months prior to falling pregnant this time.

    We had the all clear for all NTDs (spina bifda and everything) at my 20 week scan in May just gone.

    I am finding, dealing with her death particulary hard because I am pregnant one year on with a healthy baby girl.. but at the same time, think myself so lucky to be given another chance at having a healthy baby..

    I have searched the web high and low for ppl who have been through what I have...

    Anyone who would like to talk more about anencephaly with me feel free to add me to MSN or PM me


  2. #20

    Join Date
    Feb 2005
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    I have sent my sister a message to reply to your other thread. I assume she will see it in the morning,,

    Sorry for your loss

  3. #21

    Join Date
    Oct 2005
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    Moura, QLD, Australia
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    Lori I have replied to your other post :hugs:

  4. #22
    Debmac Guest

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    Hi Rach,

    Great to hear from you too. I know its normal to still cry and I am glad that I do, because it does help. I am definitely feeling the best I have health wise in ages, so maybe thats a good sign. I have been taking magnesium, which I have just found out is also something that can be lacking in women with anencephalic pregnancies. I am still on the 5mg of folate and have just had a test to check my folate levels so we will see how that goes.

    How are you going? How is your little boy?

    Love Deb

  5. #23
    Debmac Guest

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    XYGMUM

    Hello,

    I am so sorry to hear your story, it is just heartbreaking and I know how you must feel with the anniversary approaching, my thoughts are with you. Luckily you have already had your scan this time and know that all is well, at least now you can start to enjoy your pregnancy because it is the most beautiful thing. I wish you all the best.

    I would love to talk to you more if you want to, my home email address is [email protected], if you want to email me. I noticed you were in Drouin, is that Drouin in VIC? I am in Bunyip.

    Love Deb

  6. #24
    xygmum Guest

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    Hey Deb,

    Yep Drouin near Bunyip in Vic. I have emailed you hun.

    Did you have your babies at warragul hospital?

  7. #25
    Debmac Guest

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    Thanks to everyone for their thoughts, I feel like I am definitely coping better and feel much healthier after seeing a Naturopath who specialises in fertility, lots of people are asking me if I am pregnant because I am glowing, but I'm not yet, but it's nice to know that my inner health is showing.

    Take care all.

    Love Deb

  8. #26
    xygmum Guest

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    Hey Deb

    I also went to see a naturopath before falling pregnant.

    I felt so amazingly different after I seen him a few times. He said to me my body wasnt a breeding ground for a baby- and put me on some natural remedies.

    After the time frame he gave me to fall pregnant... I even felt better in my outlook for the pregnancy.

    He checked my whole body over.. and I just felt amazing when I seen him. I stopped seeing him when I fell pregnant.. but am very happy I went.

    I havent had a chance to give you a call Deb... You arent even far from my thoughts. It was Savannahs birthday yesterday... and I feel like I have lost her all over again.

    I think just knowing other mothers have been touched by anencephaly... makes me feel not so alone.

    xx Take care hun

  9. #27

    Join Date
    Oct 2005
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    Moura, QLD, Australia
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    Lori just wanted you to know i was thinking of your precious savanah yesterday on her first angel bday:hugs:

  10. #28
    xygmum Guest

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    Thanks so much hun...

    I really appreciate it

  11. #29
    Rosey69 Guest

    Unhappy Anencephaly

    I have experienced the loss of two babies to Anencephaly and hope that I may be of some help to you. I lost my first angel Sarah on July 22 in 1990, I was 22 weeks gestation and had just finished watching her on an ultrasound waving or so it seemed to me. 20 minutes later a doctor was telling me that if I carried my baby to term, she would live for an extremely limited timespan, days at most, and be in excruciating pain. I was too dumbfounded, to even consider what the doctor was saying to me but my partner took over. To this day, I remember walking out of that hospital that day faced with the decision of ending my pregnancy or allowing my child to suffer in pain. In the end, I decided to end the pregnancy although there has been times when I wish I hadnt. After Sarah's funeral, I fell pregnant again and it happened again! This time I was 20 weeks. The midwife told me it was a boy and we named him after his dad and donated him to research to help try and prevent this from happening to anyone else. I honestly do not think I have ever truly came to terms with those decisions. Its been 17 years since I lost Sarah, every year I buy a cake and some flowers for her birthday and light a candle at Christmas. She now has four younger siblings, aged 16, 15, 13 and 10. They all know about thier big sister and celebrate with me. I guess I just want you to know that I understand your grief and if you ever need a friend, please feel free to contact me. I still cry for Sarah today thinking of all she should be doing. Grieve in your own way in your own time and let no one rush you.

    Julie

  12. #30

    Join Date
    Oct 2005
    Location
    Moura, QLD, Australia
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    Julie I am so sorry to hear of you 2 being lost to anecephaly as well, when it first happens to you, ypu think your all alone but then you find so many other people

    well my Katy's 4th bday is coming up and I am missing her more and more, I think because I am finally watching one of my babies grow up and I wonder does Jack look like what Katy would have looked like

  13. #31
    rainbowbaby Guest

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    Hi everyone

    I'm a new member, I've just registered after finding this website as I was googling about anencephaly support here in Australian.

    My name is Lea, I gave birth to my twins in June last year, Ben was diagnosed with Anencephaly at our first ultrasound at 13 weeks. He is survived by his gorgeous twin sister Nara, they were born at 34 weeks gestation in Brisbane.

    I found it very hard to find support in relation to anencephaly when Ben was diagnosed, I have since created an online support group for Australians touched by the condition, if anyone would like any information about it please feel free to contact me and I'll happily tell you more.

    Already I see one friendly face that I have encountered in my internet travels (I won't name names, I hope she recognises me as I've been wondering how she was *waves*).

    I'm currently expecting a rainbow baby (singleton this time) in February, I look forward to getting to know you ladies in time and am sorry for your losses.

    Lea xxxxx

  14. #32
    rainbowbaby Guest

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    Hi, my name is Lea, I'm mum to two beautiful girls and a little boy in heaven named Ben who was born with anencephaly. I had a twin pregnancy which of course made things that little bit more difficult to get our heads around. I already see one familiar face here (not naming names, I hope she recognises me as I've been wondering how she was doing). I belong to a wonderful Australian Anecephaly support group which is a wonderful thing, but it's always nice to meet other parents in the same or similiar situations.
    I had my twins at 34w3d in June 2006, my little survivor Nara is a force of nature. Ben was alive at birth and survived for just over an hour, he was and will always be a precious baby boy.
    I'm expecting a rainbow baby in February next year, it's been a scary but exciting journey through this pregnancy thusfar.
    I hope to get to know you all well.

    Lea xxxxx

  15. #33
    Debmac Guest

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    Rainbowbaby,

    I would love to learn more about your support group if you could provide me with some info that would be great. I am sorry I havn't looked at this site for a while and just saw your post, I am so sorry about the loss of your little boy.

    Rosey69
    Hi
    I am just devastated by your post, as mentioned above I have not been to this site for a while and I am so sorry to hear of your losses. It has almost been a year since I lost my second angel and we are trying again but are really scared. We have a healthy 3yo boy and I am desperate to give him a sibling and but so far no luck falling preg. this time. Maybe I am putting too much pressure on myself, but I feel like I am living by ovulation etc. Just a question, how long after your losses did you have your next child? I hope that is not too personal, if it is please don't answer it.

    Thankyou

    Debbie

  16. #34
    rainbowbaby Guest

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    Hi Debbie, thanks so much for your reply here.

    The support group I founded along with a dear friend who also suffered a loss through anen in a twin pregnancy is called AS~AP (Anencephaly Support ~ Australian Parents), it is open to anyone who has been affected by a pregnancy with anen, not just the parents but siblings, grandparents etc.

    I'll send you a link to the group in PM as I don't know about forum rules and wouldn't want to post openly just in case I get in trouble.

    If anyone else would like the link please don't hesitate to ask me, we are so eager to build our membership base and start helping and supporting people like ourselves.

    Debbie, I wish you the very best of luck TTC, I know the fears involved with trying again, I can only imagine after two anen pregnancies you are on tenderhooks and am certain that can't be helping your efforts any. It took me 8 months to fall again, I think I was lucky, I just opened my heart to the chance that it would be ok.....I was also breastfeeding Ben's twin so that was hampering my efforts somewhat. Now I have 5 weeks to go until I meet my little rainbow baby, I can't believe it, the pregnancy has been full of anxiety on my part....I was terrified last week as I thought for sure I was going to give birth at the same gestation as I did the twins but thankfully I'm in one peace!

    Anyway, I'll get that link off to you now.

    Lea xxxxx

  17. #35
    rainbowbaby Guest

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    Debbie, I'm sorry but the forum won't let me PM you, I really don't know why.

    The link to the group is on my public profile page so feel free to go take a look there........you are of course more than welcome to join the group if you think it's for you, we'd love to see you there.

    Lea xxxxx

  18. #36
    Brooke Mary Guest

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    Hi Deb
    I gave birth to our 1st child at 20wks gest, we were told at our scan that she had anencephaly. This was in March 2001 and since then i have now 3 kids! Back then i didnt take any folate, didnt even know what it was. I feel for u to have experienced it twice is so unfair! We were told our bad news on my 23rd birthday and it tore me apart, i now cope alot better since having kids. Back then i couldnt find any one in Aust to talk to on the internet, i am amazed at just how much info is now there since almost 8 yrs ago! Would love to chat someday.........Take care Helen

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