+ Reply to Thread
Results 1 to 6 of 6
  1. #1
    Join Date
    Feb 2017
    Posts
    307
    Thanks
    327
    Thanked
    443
    Reviews
    0

    Default How do you prepare to say goodbye?

    At my anatomy scan yesterday we found out our little girl has cysts on either side of her neck, under her chin. We are going through further testing over the next few days, but it is suspected we're dealing with cystic hygroma. This is the first we've seen of the cysts so the chance of them resolving before birth is not good. Overall the prognosis for this condition, no matter the cause, is quite poor.

    At the moment I feel like it's inevitable that we will be saying goodbye, either her condition will worsen in utero, or other issues will mean we will have a medically necessary termination. Either way I don't think this baby will be coming home with us.

    I'll be 20 weeks in just a couple days, and waiting for results may take another couple of weeks or so. I can feel baby moving and up until yesterday everything was looking so good! This was our last possible attempt at IVF so there will be no future pregnancies. I am utterly devastated that we have come this far only to be losing her now!

    How on earth do you prepare for something like this??

  2. #2
    Join Date
    Dec 2010
    Posts
    1,256
    Thanks
    1,495
    Thanked
    1,060
    Reviews
    3
    Achievements:Topaz Star - 500 posts
    I am so sorry you are going through this. I really hope you get better news when your full results are back. There are some lovely ladies on here who have been through similar heartbreaking experiences and I'm sure they will be able to offer some advice.

    I lost my daughter unexpectedly the week before she was due. I hope you don't have to join this crappy club.

  3. The Following User Says Thank You to Tainted For This Useful Post:

    bubbletrouble  (26-05-2017)

  4. #3
    Join Date
    Jun 2014
    Posts
    2,065
    Thanks
    1,707
    Thanked
    1,798
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 posts
    @bubbletrouble I'm so so sorry.

    I have a very similar story to you. Our little boy (also IVF) was diagnosed with a devastating cardiac condition at 20 weeks and after further testing we made the heartbreaking decision to terminate. He was delivered at 23w6d, it was the hardest thing I've ever experienced.

    How do you prepare? I truly don't think you can be properly prepared. I am happy to share any information you would like about the termination itself, the delivery, meeting bub and the special things we did. Just let me know what you want to know and I'm happy to chat here or via PM.

    If you are delivering at a large hospital you will likely have access to specialist bereavement midwives - these women were amazing as will be a great source of information and support.

    SANDS and Bear of Hope have lots of info about stillbirth and late term termination.

    Please ask anything you like and I'll do my best to answer. I will also tag you in a similar thread I started last year, I was overwhelmed by support.

  5. The Following User Says Thank You to Mum-I-Am For This Useful Post:

    bubbletrouble  (26-05-2017)

  6. #4
    Join Date
    Feb 2017
    Posts
    307
    Thanks
    327
    Thanked
    443
    Reviews
    0
    We will obviously know more once we get results and talk to specialists, but I just feel like I need to prepare for the worst.

    Thankyou so much for your thoughts.

  7. #5
    SuperGranny's Avatar
    SuperGranny is offline Worlds best grandma! Winner 2012 - Most Helpful Member
    Join Date
    Jun 2008
    Location
    sunshine coast qld
    Posts
    6,533
    Thanks
    5,300
    Thanked
    3,065
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 postsAmethyst Star - 5,000 posts
    i have no information or expierence to offer, but i will send you my thoughts and prayers. Words fail me. hugs, and my sympathy from the bottom of my heart. marie.

  8. The Following User Says Thank You to SuperGranny For This Useful Post:

    bubbletrouble  (26-05-2017)

  9. #6
    Join Date
    Jun 2014
    Posts
    2,065
    Thanks
    1,707
    Thanked
    1,798
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 posts
    Quote Originally Posted by bubbletrouble View Post
    We will obviously know more once we get results and talk to specialists, but I just feel like I need to prepare for the worst.

    Thankyou so much for your thoughts.
    @bubbletrouble here is a reasonably detailed outline of our experience. It may be a bit upsetting so see how you go.

    The coming weeks will be really hard. I stopped working when we got our initial diagnosis because we just had so many appointments and I wouldn't have been able to concentrate.

    Some ideas for your appointments:
    Write down your questions as you think of them.
    Take someone to write down what the drs say if you guys can't. It will be info overload.
    Accept that it may take a couple of weeks to get final diagnosis.
    Don't be afraid to speak to drs again - we had so many more questions so we had a second appointment with the specialist.

    We decided to not tell people we terminated (except immediate family) we simply informed people of the diagnosis and then informed them Harry was stillborn. I wasn't ashamed of the decision but I didn't want people's opinions. The reality once you reach this point is your baby is sick and will die, it's nobodies business
    exactly how that happens and you are no different to any grieving parent.


    Termination
    Once we decided to end our pregnancy we were 23 weeks. Given this we had to terminate before I was induced. They do this by injecting medication into babies heart. It is not dissimilar to having an amniocentesis maybe just a little more painful. They rescan to check that the heart has stopped and we were all finished in about 30minuted. The tv screens were off so we didn't see anything and the sonographer and dr were amazing. DH was present and able to hold my hand the whole time.

    Induction/Delivery:
    Once this was done we saw our ob (next day) and she arranged for us to be admitted to hospital that night. I was given medication vaginally to induce labour. This medication can take a few doses 6hrs apart to work. Once you are in labour you will be moved to birth suites. I had lots of bleeding and ended up with an emergency caesarean so my story is not the norm.

    You will be able to have any pain relief you want. Epidural, injections of morphine. The contractions are just as painful as any other birth however you won't need to be fully dilated so may not take as long. The pushing will not be as painful or you may not have to push at all.

    You will get any pain relief you need afterwards as well as being offered medication to stop your milk coming in. They will also offer sleeping tablets if you want/need them.

    Meeting Bub:
    You will be able to meet and spend time with your baby after she is born if you want to. We did and I would highly recommend it. Harry was perfectly formed and looked like a baby just tiny (544g) and his skin was a little see through.

    The hospital will have access to tiny wraps and gowns for bub and I would recommend bringing a special wrap you have already purchased. We also took 2 small toys we had purchased.

    Taking photos and hand/foot prints is also a good idea. I would 100% recommend this even if you don't meet baby the midwives can do this so you can choose to see them later if you wish. A company called Heartfelt also take professional photos of you and bub, they are newborn photographers so the images are lovely. The hospital can organise this.

    We choose to keep Harry with us after the birth. We used a cuddle cot ( most big hospitals have them) this is a little bassinet that keeps baby cold so you can have them in your own room for as long as you like. After 36hrs we said goodbye and the midwives took him away, we sent a teddy and a special blanket with him and he was buried with those.

    You will legally required to have a funeral as bub is born after 20 weeks. We just had a tiny graveside service with our parents and siblings (8 people). The hospital will be able to assist with finding a funeral home to look after baby.


    What next:
    The next 3 months were the worst of my life. I cried, I screamed.... DH and I grieved differently which is common but that was very hard. In the very early weeks I truly believed I would die, not so much suicidal just convinced I couldn't survive the pain. This is when groups like SANDS are useful as well as phone counselling they offer online groups. We also saw a private counsellor we had previously seen during our ivf journey. I ended up needing antidepressants and this is nothing to be ashamed of, don't just suffer if you need help get it.

    I had 6 weeks off work and returning for short shifts and building back up slowly helped. Before my return I had my sister (we work together but ask your boss or friend) to pop a note up explaining I was returning to work and wouldn't be able or comfortable discussing what had happened. This stopped most people trying to bring it up. There were still those who felt the need to discuss and the comments hurt "it was gods will" "it's for the best" "at least you know you can get pregnant" I just had a rehearsed response "I can't talk about this" "I need to focus on my work".

    It is nearly 18 months since we lost Harry and it does get easier. We miss him and think about about him but we can now visit his gravesite and talk about him without tears (mostly). It won't feel like it but there will be light at the end of the very very dark tunnel.

    I'm happy to answer any specific questions you have. Just ask.

  10. The Following 5 Users Say Thank You to Mum-I-Am For This Useful Post:

    BlondeinBrisvegas  (30-05-2017),bubbletrouble  (26-05-2017),M'LadyEm  (26-05-2017),Phia  (27-05-2017),ricepudding  (26-06-2017)


 

Similar Threads

  1. How do you prepare chicken for bubs?
    By Mrs Little in forum Weaning & Starting solids
    Replies: 9
    Last Post: 29-05-2006, 11:33
  2. How did you prepare?
    By JanetF in forum Homebirths
    Replies: 14
    Last Post: 16-04-2006, 03:36
  3. How do you prepare Sweet potato for infants?
    By Mrs Little in forum Weaning & Starting solids
    Replies: 3
    Last Post: 27-03-2006, 16:38
  4. How did you prepare your child/ren for the arrival of a newborn?
    By Mummaof2 in forum Pregnancy & Birth General Chat
    Replies: 2
    Last Post: 25-10-2005, 11:45
  5. How did you prepare for breastfeeding?
    By JanetF in forum Breastfeeding Support
    Replies: 25
    Last Post: 04-10-2005, 13:43

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
FEATURED SUPPORTER
Shapland Swim SchoolsSemi private learn to swim classes for a maximum of 3 children in specialized heated teaching pools. Our swim schools ...
FORUMS - chatting now ...
Low sperm count and motilityMale Infertility Issues
New Childcare subsidyChildcare Options
Optimistic October TTCConception & Fertility General Chat
IVF/FET April & May chatConception & Fertility General Chat
Settling into daycareChildcare Options
Noble NovemberConception & Fertility General Chat
REVIEWS
"Made bed time less anxious"
by Meld85
My Little Heart Whisbear - the Humming Bear reviews ›
"Wonderful natural Aussie made product!"
by Mrstwr
Baby U Goat Milk Moisturiser reviews ›
"Replaced good quality with cheap tight nappies"
by Kris
Coles Comfy Bots Nappies reviews ›