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Original poster

Termination for Anencephalic baby - am I doing the right thing?

204 replies

KatyH · 20/02/2007 21:34

We just found out today that our unborn baby (16 weeks) is anencephalic i.e. the brain and skull have not developed, it's a form of neural tube defect. We've been told that if we carry the baby to full term and if it is not stillborn then it will probably only live for a few hours. I am booked in for a medical termination but feel absolutely appalled at the idea of doing something to bring about the death of a much wanted baby. I know logically that it would be hastening the inevitable but I can't get the images of the scan out of my head, which showed an otherwise perfectly normal baby kicking its arms and legs. I think I would have coped much better if I had had a miscarriage.
Does anyone else have any experience of this, or at the very least, medical terminations (which also terrifies me)?

OP posts:
saralou100 · 20/02/2007 22:27

please don't judge yourself. your very brave.

edam · 20/02/2007 22:28

Katy, I am so very sorry for you. Agree, can't imagine anyone would 'judge' - what's to judge?

Ladymuck · 20/02/2007 22:29

I really can't see that anyone could judge you, though I think it is a very lonely route to walk as you'll have by now told your friends and family about the baby.

If you did feel that you would be judged, then be more selective with whom you share the precise details, and use a vaguer "we lost the baby, he/she was anencephlaic, and unlikely to make it to term". If necessary your GP can word the sick notes sufficently vaguely to allow thwe widest possible interpretation.

And stuff work for now.

serenity · 20/02/2007 22:29

Very sorry to hear this KatyH, my thoughts are with you and your fami;y Sorry I haven't anything more practiacl to say. X

Original poster
KatyH · 20/02/2007 22:30

Thank you everyone, you have no idea just how helpful you have been. Things are much clearer in my head. I'm off to bed now to have a cry and a cuddle

OP posts:
badelaide · 20/02/2007 22:30

Katy, poor,poor you.
Please don't worry about whether to look at your baby, it's not something you will have to decide immediately and you can ask a midwife to describe him for you first.

SmileysPeople · 20/02/2007 22:31

Katy no one could possibly judge you badly for this and don't judge yourself.

I think your attitude is so admirable wanting to do the best for your baby right until the end.

You cannot change the inevitable, but as you said you can make it dignified for him/her, and something you can remember without guilt.

Be kind to yourself, and give yourself time after to grieve.

Stiller · 20/02/2007 22:32

I don't think people will judge you KatyH. I can't imagine that anyone would be anything other than saddened for you and your family.

I totally respect and understand your feelings towards a medical termination verus surgical. I'm so sorry that I used the word horrific. I got it completely wrong and assumed you'd been advised this way rather than the surgical way and just wanted to let you know that you have other options. I'm very sorry xx

BURNINGTHECANDLE · 20/02/2007 22:33

I really feel for you, you seem full of questions that you look for answers for. Why don't you just go with what feels right that gut instinct. Return to work when you feel ready, if you want to terminate go with whatever feels the best option, if you want to carry to term then do that. Katy your whole world has just turned on its head, take some time to think and feel what you want to do, you don't have to make any decisions right now. Although I'm sure you will make the right decisions for your unborn you also need to look after yourself. I wish you all the best.

SmileysPeople · 20/02/2007 22:34

Ladymuck is right, you are not obliged to tell everyone.

2of my friends took the 'we lost the baby' route for acquaitnaces and work colleagues. Whatever feels right for you.

AitchTwoOh · 20/02/2007 22:35

what's to judge, katy? this is a terrible decision, and you're making it based on what you think is for the best for your baby and for yourself and your dh. my heart absolutely goes out to you...

milge · 20/02/2007 22:38

Katy, your work colleagues will feel nothing but sadness and sympathy for your situation and will work 12 hour days for months if necessary without judgement or anger. They will just want to support you.

ghosty · 20/02/2007 22:52

My thoughts are with you KatyH ... this must be a terrible thing to have to go through
{{{{{hugs}}}}}

skiwear · 20/02/2007 22:59

katyh so sorry this is happening to you all. Can't imagine collegues/friends judging you please don't judge yourself.

fireflyfairy2 · 20/02/2007 23:09

Oh darling

what a decision. You are his/her mummy & you will want what's best for baby. Do what you need to do sweetheart.

No-one will judge you, but we will be here to hold your hand.

Take Care xxxx

SpaceCadet · 20/02/2007 23:14

My heart goes out to you..what a choice you have to make, the only thing that i can say, is go with what your heart says, if you choose to terminate then ask for another scan so that you can see your baby one last time.
xx

themoon66 · 20/02/2007 23:25

Katy... my heart goes out to you. I had this decision to make... but it was 21 years ago now. I was 23 weeks pregnant at the time and the hospital cocked up and lost my results from a test taken at 16 weeks. I thought I was clear coz I hadn't heard from them... then got a phone call out of the blue

You have no choice. Don't feel bad. It's nothing you have done and there is nothing you could have done differently.

I don't know what to say. I know nothing can seem to make it better. But time does... honestly.

Marina · 21/02/2007 00:02

Katyh, I'm so sorry you've had this life-incompatible diagnosis for your unborn baby
If it helps at all, I delivered my prematurely stillborn son at 20 weeks four years ago now. I had one to one support from a midwife from the start of my induction, the hospital had a special delivery suite for people in this sort of situation.
It was desperately sad but it did have a dignity to it. I had gas and air but I could have had whatever else I wanted. I was given valium while waiting for the prostin to work and that helped a lot.
The midwife was wonderful and I am sure you will get the support you deserve and need at this wrenchingly grim time.
I was signed off sick for a month after the delivery and then returned to work. Physically I had fully recovered very quickly.
Your GP should sign you off and you could get one trusted colleague to brief everyone else. My colleagues did this for me and I will never forget their quiet kindness and respect.
HTH

snorkle · 21/02/2007 00:07

Message withdrawn

LaidbackinEngland · 21/02/2007 00:22

Katy - I am so sad for you. My brother and sister in law in Australia had to terminate their pregnancy last year at 20 weeks for the same reasons as you, a condition that was incompatible with life.

She gave birth to the baby and they were allowed to name him, dress him and the midwife took photos. She had pain relief, although labour was slow and she felt uncomfortable.

As someone else said, I think 20 weeks is the point where babies are classed as "stillborn" and have to be registered, but I am sure you would be allowed to have photos if you wanted them and to see the baby. Although it was really hard for them at the time, I think seeing the baby really helped. My brother in law, who is a Dr, said you couldn't really see anything wrong with the baby - each case is different.

They had a ceremony with other parents of babies that didn't make it about a month later.

They underwent lots of genetic tests to explore why the cerebellar had not formed, but it was just one of those things.

She conceived again in August and she has had very close monitoring from the same hospital (2 weekly scans from 6 weeks) and offerred more in depth tests. She is due to give birth in early April and so far , everything looks good.

Don't feel judged or guilty.... this could have happened to any one of us. I really hope that you are able to mourn the loss of this baby and that when you feel ready, you go on to have a healthy baby.

AitchTwoOh · 21/02/2007 00:29

snorkle. reluctant to hijack but you and your teacher are misinformed about ectopic pregnancies. happy to discuss this on another thread if you wish.

snorkle · 21/02/2007 00:43

Message withdrawn

bloss · 21/02/2007 05:07

Message withdrawn

eidsvold · 21/02/2007 05:23

I think you have to decide what is best for you and your family. As to your work - less information is all they need - you lost the baby - enough said. They do not need the intricate details.

book here book mentioned by bloss.

kateyp · 21/02/2007 07:28

Hi Katy,
I am so sorry to read about your little one. I would second (or is it third now?) the recommendation for ARC - they are very very good and will help with the decision process as well as support before, during and after. I believe from friends that have used them that they have a forum much like this that is only accessible by those in similar situations.

I had a stillbirth at 26 weeks in Dec 02. The labour is difficult but I am certain that anything else would've been worse. In terms of whether to see your baby or not - first off it won't be as bad as your imagination. Second, have someone take LOTS of pictures. It may be that you never feel the need to look at them. But if you don't have them, then you will never know.

I help run a web based support group which if you are interested in joining you would be more than welcome. Drop me an e mail (kpotts at hotmail.com) (but with symbols not words!) We have several members who have had anencephalic babies and would be happy to share their experiences with you.

Take care, Kateyp
x

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