+ Reply to Thread
Page 1 of 85 1231151 ... LastLast
Results 1 to 10 of 847
  1. #1
    Allymumtobe's Avatar
    Allymumtobe is offline Winner 2012 - Most Optimistic Poster
    Join Date
    Apr 2010
    Location
    Doreen, melbourne
    Posts
    3,034
    Thanks
    2,149
    Thanked
    1,198
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 posts

    Default Has anyone kept their edwards syndrome baby?

    Just like the subject line says, our FISH results have come back positive for trisomy 18 and we are waiting for full results for mosaic or not.

    Right now baby is only a week behind in growth, very active with no signs of a malformed heart, brain, skull or limbs, yet.

    We are trying to make a decision, the doctors are pressuring us to abort but we are looking for any hope possible.

    Thank you

  2. The Following User Says Thank You to Allymumtobe For This Useful Post:

    kirsty157  (07-01-2013)

  3. #2
    Join Date
    Feb 2012
    Posts
    3,521
    Thanks
    1,318
    Thanked
    1,574
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 posts

    Default Has anyone kept their edwards syndrome baby?

    Hi Ally, very sorry to hear of your situation. I've followed your weightloss/ivf journey since April.
    I have no advice but wanted to give you hugs. Don't let anyone pressure you into something you are not comfortable with. Do only what YOU and your partner think is best as it is you who has to live with the decision. All the best, xoxo

  4. The Following User Says Thank You to Ngaiz For This Useful Post:

    nelljm  (08-07-2015)

  5. #3
    Join Date
    Oct 2008
    Location
    Sautéed with bacon
    Posts
    6,070
    Thanks
    271
    Thanked
    2,695
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 postsAmethyst Star - 5,000 posts

    Default Has anyone kept their edwards syndrome baby?

    So sorry to hear.
    I'd recommend genetic counselling ASAP.
    We had a baby with a chromosomal abnormality we had to make a choice with.
    I don't think I received enough support and counselling through our process.
    Hugs.

  6. The Following User Says Thank You to faroutbrusselsprout For This Useful Post:

    Glover  (05-09-2013)

  7. #4
    Allymumtobe's Avatar
    Allymumtobe is offline Winner 2012 - Most Optimistic Poster
    Join Date
    Apr 2010
    Location
    Doreen, melbourne
    Posts
    3,034
    Thanks
    2,149
    Thanked
    1,198
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 posts

    Default Has anyone kept their edwards syndrome baby?

    Thanks girls. I just want more information before making a huge decision. Ofcourse I more wish it has been a huge mistake!

    How can I make the choice to end his life?

  8. #5
    Join Date
    Aug 2012
    Posts
    6,028
    Thanks
    5,464
    Thanked
    4,401
    Reviews
    20
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 postsAmethyst Star - 5,000 posts

    Default Re: Has anyone kept their edwards syndrome baby?

    I'm so sorry to hear that you're going through this. I'm unsure about the specifics of edwards syndrome, but if I were in your position I would have questions before I could even consider making a decision
    What is the chance that bub actually has it?
    If they do, does it pose a risk to my health?
    Will bub survive without abortion?
    What are the health problems for bub if they survive?
    What wouls their life expectancy be?
    Are there any support groups that I could get in contact with?

    I wish you so much luck with whatever decision you make, it sure wouldn't be easy

  9. #6
    Join Date
    Oct 2009
    Posts
    5,276
    Thanks
    3,697
    Thanked
    3,090
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 postsAmethyst Star - 5,000 posts
    I'm so sorry, Ally. I haven't been in the position that your title asks about, but I had an amnio on Friday and we are expecting FISH results tomorrow, following a high risk NT scan (for Down Syndrome).

    We went through a lot of soul searching about what to do if the results tomorrow are positive, and we did come to a decision. I don't really want to go through all our reasons openly on here, but I'm happy to talk to you about if you want to PM me.

    Please remember that there are no right or wrong answers about what to do. Any decision you come to will be the right one for you at this time. Even if you are worried that you may later regret it, know that you made the right decision at the time you had to make it.

    I agree that counselling is a good idea here. There are so many factors to consider, and no one can tell you what to do.

    I'm so sorry you're in this situation.

  10. The Following User Says Thank You to Guest654 For This Useful Post:

    Greery  (05-04-2013)

  11. #7
    LifeInShadesOfGrey's Avatar
    LifeInShadesOfGrey is offline Just a little bit silly :)
    Winner 2012 - Best Username
    Join Date
    Feb 2011
    Posts
    5,674
    Thanks
    2,052
    Thanked
    1,364
    Reviews
    35
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 postsAmethyst Star - 5,000 posts

    Default Has anyone kept their edwards syndrome baby?

    I just wanted to offer massive hugs. I agree about seeking counselling and fully understanding the situation before terminating.

  12. #8
    Join Date
    Oct 2011
    Posts
    385
    Thanks
    240
    Thanked
    264
    Reviews
    0
    Wow - difficult emotional situation. Just reading the words in your post, you have indicated that you've found out recently and are waiting for more results, the baby seems ok so far and that you're looking for hope. The tone of the post is screaming out "I don't want this to be true" which feels like a completely normal reaction.


    While you're in that stage of not wanting it to be true, it's really hard for you to make any kind of decision because you're not quite ready yet to accept the reality of the situation. Only you know how you'll feel about terminating the pregnancy. No doubt you also know the survival rates of Edwards babies and will be able to consider that more in due course.


    I would suggest not making a decision immediately. To me, it just feels like you're not ready yet.

  13. #9
    Join Date
    Feb 2008
    Location
    Melbourne IVF
    Posts
    2,828
    Thanks
    75
    Thanked
    130
    Reviews
    3
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 posts

    Default Has anyone kept their edwards syndrome baby?

    Hi I'm so sorry for your result. I just wanted to let you know that our first baby had T18. We had a scan at 11 weeks and everything was perfect. Went for our 12 week and the baby had died. We were completely unprepared. We had chromosome testing afterwards which revealed T18. At the time I did quite a bit of research on it and of the issues/life expectancy etc. I was fortunate that I didn't have to make the decision that it was made for us. But we have had 2 pregnancies since that have resulted in 2 perfectly healthy babies, which I might not have if our pregnancy had continued. I would definitely suggest counselling too. I thought I would never get over our experience but in time I did and now have a one and two year old. My heart goes out to you xx

  14. The Following 2 Users Say Thank You to blondekelli For This Useful Post:

    Bubbles10  (07-01-2013),happy wanderer  (02-04-2013)

  15. #10
    Join Date
    Jan 2012
    Location
    Western Sydney
    Posts
    1,688
    Thanks
    0
    Thanked
    489
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    I don't have experience in this diagnosis (we got high risk results but opted not to do amnio, so we are 'going blind' so to speak) but I wanted to throw more support out there for you. I can't even begin to imagine the decisions you're being confronted with, but I am thinking of you. When will you receive full information? And were there any ultrasound markers that showed up for you? From what I have read about T-18, most have some kind of anomaly flag up during routine scans.


 

Similar Threads

  1. Anyone had experience with Edwards Syndrome?
    By dncnllama in forum Pregnancy Tests & Help / Support with Results
    Replies: 4
    Last Post: 11-05-2013, 15:14
  2. Down Syndrome risk for 2nd baby
    By mum72 in forum Pregnancy Tests & Help / Support with Results
    Replies: 1
    Last Post: 02-08-2012, 10:31
  3. GERD baby jerking.... Sandifers syndrome or infantile spasms?????
    By bluejuice in forum Serious Health Issues
    Replies: 2
    Last Post: 01-06-2012, 01:46

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
free weekly newsletters | sign up now!
who are these people who write great posts? meet our hubbub authors!
Learn how you can contribute to the hubbub!

reviews
learn how you can become a reviewer!

competitions

forum - chatting now
christmas gift guidesee all Red Stocking
Tambo Teddies
Visit our online store and select your individually handmade natural sheepskin teddy bear. Our soft and loveable bears come in a range of styles and colours. Created in Outback Queensland each bear is unique individual. 100% Australian made!
sales & new stuffsee all
True Fairies
True Fairies is the first interactive website where children can engage and speak with a real fairy through the unique webcam fairy portal. Each session is tailored to the child, and is filled with enchantment and magic.
Visit website to find out more!
featured supporter
Transition into Parenthood / Calmbirth Sydney
Julie's Transition into Parenthood and Calmbirth courses for pregnant couples will get you ready, prepared and organised for the wonderful birth of your beautiful new baby. Birth Support Doula training provided in 2017 open to all. Call 0401 265 530
gotcha
X

Pregnant for the first-time?

Not sure where to start? We can help!

Our Insider Programs for pregnancy first-timers will lead you step-by-step through the 14 Pregnancy Must Dos!