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

[KatyH]

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)?

weepootleflump, i'm so sorry to hear about your wee baby. i suppose the reason that so many people on this thread are supporting KatyH in her thought processes towards having the termination is that we simply haven't been confronted by the decision ourselves. of course there is no question that KatyH would receive support here regardless of what road she takes.
the pictures on the website you linked to are absolutely darling. it must have been very hard for you too, i'm so glad that your decision brought you some peace.

You've only just found out some really shocking and upsetting news Katy, give yourself some time to let the news sink in. Don't feel rushed or pressurised into making a decision, take your time, live with the news for a bit and your heart will tell you what is right for you.

weepootleflump - what an amazing story, it is great ot have both sides.

That's the amazing thing about Mumsnet. Support, understanding and both sides of all stories.

of course i never meant to suggest what i would do was right- perhaps it was crass of me to put that in. I can totally understand why someone would continue with the pregnancy- i just know that i couldn't take that route.

whatever you decide, there's a heart breaking outcome.

Weepootleflump, thanks for sharing your experience, and for that link . I know of people through SANDS who took the same decision you did.

Kate, couldnt read this thread without posting myself.
My heart & sympathy goes out to you, you poor girl.

I too had a pregnancy where Anencephaly was detected, but a rather a different situation than yours Im afraid.

My 15wk screening test showed that I was high risk for Downs, & was advised to have an amnio. I had previously had an amnio with my first born,(due to high risk of D/S). Amnio results showed as normal & went on to have a healthy boy.
Whilst having my amnio with the 2nd Pg, (19 wks) the Dr was unable to get amniotic fluid, so a 2nd Amnio was booked for the following week. A scan prior showed baby's heartbeat etc, but after the amnio had be carried out a further scan showed that the baby had died!
Later that day a pessary was given to induce labour, & I gave birth to my baby girl. It wasn't until I demanded an autopsy that the anencephaly was detected.
Too cut a long story short, I wasn't convinced, as nothing had been detected on a scan. But I wont go in to that!

But 9 years down the line & after finding MN, I came on here & posted my story & I finally accepted that my baby had had anencephaly.

If you have read the sight that was linked for you, & as you already know, your baby will have no chance of survival & you may not even go to full term if you decided to not have the termination. > Im just so sorry for you I really am, but I although I didnt have to make the decision you have to make I can fully understand how you are feeling.
I really do hope you have the support that you so really need, but only you & Dh can make the decision to either carry on with the pg or have the termination. Either way you choose, you can still have a choice to have pictures/prints of feet etc & without sounding daunting, you can have a funeral too. I did, & I'm glad I did too.

I just feel so so sorry for you Kate, I'm lost for words now, as nothing is going to be easy about the situation you're in no matter what you choose to do.

((((hugs))) ((((big hugs))))

weepootleflump, I have said that whatever KatyH decides, she would get support on here, so please don't think that everyone is pushing her towards termination. This decision is hers alone.

During my 2nd pregnancy, I was faced with the possibility that my daughter had a life-limiting condition. I decided before I had the amnio (which thankfully ruled out the condition) that I would terminate if we got a bad result. I too know of people who continued with their pregnancies in similiar situations, but that really wasn't what I wanted for me or my family.

I'm so glad that you made the right decision for you & your family and that you can remember the time you spent with your little boy, x

My heart goes out to you and your family - how very very hard.

The only other thing I can think of to consider is whether, if your babe went full term, his or her organs could be used to help other little ones? I say this very hesitantly, since though i have the greatest respect for those who make this agonising choice, I don't think i could do so. But it is an option that some have found helpful in that an inevitable death has meant life for others.

Whatever you do, we will be thinking of you.
xxx

bundle, I totally understand what you're saying. At the risk of sounding like a hypocrite, I think if I found out about a life-limiting condition that would require putting a baby through lots of operations and pain in their short life then I would be more inclined to terminate as I couldn't bear to see them suffer.

Hi KatyH
I havn't read all the replies in the thread but saw the title and wanted to offer my HUGE support to you at this time. In 2001 at my 20 week scan they diagnosed anencephaly in my DS.

It was a huge shock to us and it was possibly the hardest thing I have ever gone through. I, like you thought about going to full term and I did in fact find a great website (american) full of women who had decided to go to full term with babies with anecephaly. I cant remember the site (sorry) but im sure a thorough google site will bring it up.

We decided in the end that it would be too difficult to go to full term knowing how it would end. Though I will say that 'medical termination' is an understatement. You are basically induced and I was given medication to prepare my body for labour then sent home for three days. I then came onto the labour ward and was given 2 lots of pessaries 6 hours apart to start of contractions. I had a nine hour labour and gave birth to my DS who weighed half a ponund and was perfectly formed apart from a tiny hole in the top of his head. It was a gruelling time.. but you just find the strength to go through it.

The midwife I had was superb..she stayed on for three hours past her shift to see my labour through and was so caring and patient. It was difficult and emotionally draining.. But I held him for about an hour and the staff took two photos of him and did hand and footprints.

We named him and put together all the cards we recieved, the photos, hand/footprints into a lovely box that my best friend gave us. I also wrote a long letter to my son following the labour telling him how much he was wanted and loved by his parents and sister (then aged 6). The box now lives in my DD's bedroom under her bed.

We had a funeral for him and he has a headstone which we visit every year on his birthday.

KatyH....Its gonna be rough for you and your family there is no escaping that whatever you decide to do. What helped me was talking, and talking, and talking to friends, family...over and over just describing how you are feeling evey step of the way and taking support from people. Its hard because people dont often know what to say. But remember that there is no right or wrong way to deal with this...follow your heart and do what feels right to you.

I still think of him now and we talk about him and say his name..he was loved and wanted and very real. Time does help..and I send you HUGE hugs and empathy.

Katy - couldn't read this without posting, have no experience of this, but just wanted to let you know thinking about you and dp at this really difficult time x

KatyH I also couldn't go on without posting to you how and how much I feel for you.

3 yrs in June my DS was born at 20wks through a medical termination. We found through abnormal tests results and a scan at 19 wks that he only had 1 cm of fluid which was causing severe defects in arms, legs, head, brain and he would have no lung function once delivered and umbilical cut. The consultants were giving him a 2% chance of going to term and 0% chance of living past 30 min as he wouldn't be able to breathe. We felt it was best for our family (our DD was 2.4 at the time).

They gave me a drug which would stop the pg hormones and then was induced 2 days later. It was difficult, but thankfully my labour only 4 hrs. We held Robert, got his picture, foot prints & hand prints. His ashes scattered in the Rememberance garden. He was much loved.

My close friends know we had a medical termination. For others I say he was stillborn.

It is a difficult choice. I don't regret my choice. We went on to have another lovely DS 13 mths after Robert was born. He is now a very active 2.5.

My thoughts are with you.

weepootleflump, there's nothing hypocritical at all about the complex feelings which such a terrible situation gives rise to. My heart goes out to you, to KatyH and anyone else faced with this.

The condition suspected in our case was Edwards Syndrome, with most babies stillborn and the average life expectancy 6 days I don't think that surgery or other treatments would have been appropriate (although a few ES children have survived to adulthood).

Katy, I have no words of advice to offer you, but I couldn't not post.

Whatever you decide, we'll always be here to listen.

xxxx

Katy I can't begin to imagine what you must be going through at the moment.

All I can say is that no matter what you decide it has to be right for you and your DH/P, neither option is really what you want but neither option is wrong.

Speaking to people who have been through this is probably the best thing for you now regardless of what you decide.

xxxxxxxxxxxxxxxxxx

Katy I am so so so sorry to read this.

The decision you make is personal to you, you are doing what is best for you, your family, and your baby. No-one has the right to judge you, because no-one is going through what you are going through at the moment.

Whatever you decide, you are in control. If you want to see your baby, to hold your baby and have pictures, then that is what you must do. It is your baby, and you are taking the decision that is right for him/her.

With regard to time off work, I wouldn?t try to put a timescale on it, because every person is different, only you will know when you feel ready to go back, but please take all the time you need, work will not crumble without you, but you might if you go back too soon. They will be understanding.

If you don?t want to tell everyone, can you tell one member of the family who can then tell the rest? That way you don?t have to feel like you?re constantly being the bearer of bad news. Once you?ve told that one person, they can pass on the sad details to those that need to know. Those that don?t need to know, don?t need to know iyswim, what you?ve decided and what you are going through is ultimately nobody?s business but yours.

When you feel ready, you might want to think about having some counselling to help you come to terms with your loss. Your gp should be able to refer you.

Please look after yourself xxx

KatyH...i'm so so sorry to hear your news. If this is any help whatsoever and not too cold....The way I see it, whether you go to term or have a medical abortion, both ways you will get to go through the labour with as much or as little pain relief/meds as you want.
A surgical abortion will be quite different in that you will be given the drugs the surgeon sees as necessary and it may be quite a different experience, more out of your control, IYSWIM.

Whatever YOU want is all that matters and don't let anyone pressure you to do anything you don't want to do, or that doesn't sit comfortably with you, for whatever reason.
I don't know if this is any help, just offering the only thing i can in terms of "practical" help. I am thinking of you. You will get through this with the love and support of those around you, not their judgement, so don't worry about that.

cori, sorry, maybe you've misinterpretted me a little.. i said a medical termination would be less traumatic than a surgical... of course whatever katy decides will be awful at the time.

surgical terminations are not done over 14weeks becau of complications, thats what i was trying to say when i said less traumatic.

i resonded to her op asking for experience of this... when i'm involved in a medical termnation as a nurse, i want the patient to have a 'good experience' sorry i don't know how else to word that... but i don't want a bad situation to be made even worse, am i making sense?

KatyH, I'm so sad for you. Although not anencephaly, a friend recently terminated her pg at about 6mths after a chromosome abnormality incompatible with life was discovered. She has no children but previously lost two pgs before 12wks. She was induced and found the process to be nowhere near as bad as she'd imagined.

She went into hospital in the early morning and was able to go home again around 6pm. They gave their baby a name and held a funeral. They've told people they lost the baby but don't go into details unless they particularly want people to know.

Once again, I'm so sorry for your news.

Katy, how old is your dd?

Just wondered as this was something we worried about (our dd was 2). We didn't mention much about the baby after we found out but when he was born we decided to bring her in to hospital to meet him.

It was like without having to say much she just understood he wasn't well. She now mentions him quite often and likes to get his box of precious things out to look through and she'll say 'poor baby wasn't well'

I think children are a lot more accepting and able to deal with things than we sometimes give them credit for.

Weepootleflump - just wanted to apologise for being one of those who said I would terminate in that particular situation You're quite right - it's really an unimaginable situation to be in, and I can see how my supposition would be hurtful. So sorry

Oh dear this is so devastating to read. Can't look at it without posting my sincerest deepest sympathies to KatyH and everyone else who has been through something similar and are trying to support her. You are all an inspiration and a reminder as to why Mumsnet, with all its faults, is such a good place to come when you need comfort and help.

SpawnChorus, there's really no need - it's what mumsnet is all about, but thank you.

I think in some instances though we need to be more careful. I came onto mnet looking for support after my scan and thankfully didn't find much when I searched for 'anencephaly'.

I didn't feel brave enough to start a thread as Katy has. Having seen the reaction here though, I am so relieved I didn't. If almost 100% of mners had agreed termination was the right decision then I think I'd have been hugely swayed by that.

I couldn't not post, just to say how sorry I am.