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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:
snorkle · 23/02/2007 23:39

Message withdrawn

fussymummy · 24/02/2007 00:02

KatyH Forgive me for not posting before, but i've only just come across this thread.

One day you will realise that the decision that you made was the right one.

You may not feel like that each and every day, and some days will be so much harder than others.

If you want to speak then please CAT me as i have first hand experience of this, and i know how hard this will hit you for a long time to come.
I also have a friend who lost two babies with anencephaly.

Even if you decide not to CAT me, then the one piece of advice that i can give you to safeguard any future pregancies, is to take folic acid at the higher dose of 5mg.
This can only be prescribed by your GP and not bought over the counter.

I understand that you may not want to think about future pregancies, but this is one piece of advice not to be ignored.

Please take care of yourself. xx

ScummyMummy · 24/02/2007 00:14

You've written very movingly about this, KatyH and you sound like a really brave, thoughtful woman. Lots and lots of love and respect to you and your dh.

duchesse · 24/02/2007 01:22

The baby I miscarried at 13 weeks in October was almost certainly anencephalic, according to the sonographer. I must say that I was relieved it had died of its own accord, so did not have to be faced with the decision you are.

You must know that nothing will save this baby. Even if you were to take it to full term, which is a perfectly option, it would die. I found a website all about the condition when I miscarried, and there are many lovely pictures of babies who've just been born, all wearing little hats to cover their heads, all looking perfect. I will try to track down the website in a moment.

What you decide to do will have to depend entirely on your health- going through an entire pregnancy is more risky for you than terminating at this stage. However, the psychological effects of doing this may outweigh the physical benefits. No-one can make this choice for you.

At the age I am (39) with little time ahead of me, I think that had I been faced with this decision, I would have opted to terminate in order to get back to conceiving more quickly.

Good luck with whatever you decide to do, and I am sorry you are going through this.

duchesse · 24/02/2007 01:39

Sorry KatyH- I just read the entire thread and realised you'd made your decision already. May your recovery be as fast as can be expected now.

Uki · 24/02/2007 02:01

Dear Katy

just wanted to say i'm sorry, for the terrible decision you had to make, and the loss of your little one. I think you know you made the right decision and no one else really matters in the decision except you and your family anyway.

you are very brave.
[[hugs]]

suedonim · 24/02/2007 12:32

I'm so sorry, Katy, but happy that it was as good as it could be in the circumstances. Take care.

Woooozle100 · 25/02/2007 11:10

Dear Katy - just wanted to add my support and send you my deepest regards in this most terrible time. I am so sorry you have had to face things that no woman really should. All the best x

saralou100 · 25/02/2007 14:24
Sad
fryalot · 25/02/2007 14:28

thank you for letting us know, katyh. so sorry you had to go through this

Chooster · 26/02/2007 13:27

KatyH - I've only just seen your thread, and I was pleased to read that you are at peace with your decision and you are coping. I'm just posting now to say that if you want to get in touch then please do as I had the same decision to make in December 05.

My baby's condition was discovered at 20wks and although not the same as yours it was incompatible with life and even if my baby did make it to full term he would have died immediately. As a result I had a termination at 21wks.

I'm sure you are coping in your own way and managing through but if you do want to get in touch for any reason then please just let me know... Even if its further down the line. I know everything came back to me when I became pregnant again - I'm currently 19wks with my third son (I still class my second son who didn't make it as my child) and the care I've had has been wonderful.

Please take care and good luck in the future.

weepootleflump · 26/02/2007 20:30

KatyH, I'm so glad to hear you had a lovely birth experience - it really will help so much in the healing process. I was so worried about you and am really happy to hear you say you're at peace with your decision. My best wishes go to you and your family. >

bundle · 27/02/2007 17:34

Katy, I'm glad things went as well as you could have hoped, please seek any support you might need over the next few weeks and months from MNers, x

USAUKMum · 27/02/2007 18:34

KatyH my thoughts are with you.

Prisma · 13/09/2007 21:39

I've been searching under 'termination' and just discovered this thread. I think you've been incredibly brave KatyH. I had to have a termination 2 weeks ago when I was 22 weeks pregnant for a case of hydrops so severe that my little son's condition was also 'incompatible with life'. I say 'had to', because I really didn't feel we had a choice and for that I feel almost absurdly grateful. The physical side of things is over and went as smoothly as I could have hoped, but emotionally it's only just starting to hit me. There is a great deal of uncertainty about what caused it and as we're still waiting test results I'm still in limbo and can't really move on. Has anyone else experienced a termination following a diagnosis of hydrops?

cantseemyfeet · 14/09/2007 01:25

KatyH,

So,So sorry to read your thread, you must be going through hell right now.

I have been through what you are going through now and although it wont seem it right now you are doing the best thing for your baby.

I was told at my 20 week scan that my baby had severe spina bifida and hydracaphalus (sorry aboout spelling). Like you the scan of her looked fine, she was jumping and kicking about but when the nurse left the room half way through the scan to get thedoctor I knew something was REALLY wrong and it was without a doubt the most heartbreaking time of my life.
I was told that the baby was very unlikely to survive the birth and if so her quality of life would be very poor (blind, brain damaged, paralysed)I had to go into hospital 2 days later to take a tablet that stops the heart beating then return 2 days later to be induced. Id be lying if I said that it was anything but harrowing, but I knew I was doing what was best for the baby and that got me through the labour. The nurses were fantastic, I could hold her as long as I wanted, she looked perfect, I didnt look at her back but I knew they could see signs of the SB. They took photos of her, gave me her hand and footprints and the blanket she was wrapped in.
This was 7 years ago now, at the time I was as devastated as you are feeling now but believe me honey it will get easier as time goes on. Right now you will be wondering 'why me', and I know you will of gone to hell and back since you had the scan but time will make it a little easier I promise. You never forget,but each day is a little less painful and you start to come to terms with it all. I will be thinking of you pet and my heart really does go out to you. xxx

Chooster · 14/09/2007 09:47

Hi Prima,

I had a termination at 21 weeks due to fetal hydrops in December 2005. It was my second pregnancy (I have a DS who is now 3) and a problem was detected at my 12 week scan where the nuchal fold measurement was 13mm, so very high. I had a CVS but nothing wrong was detected so I was fairly optimistic is was just one of those things. But at my next scan (18wks) the hydrops was very evident. The baby was also not moving and they saw that his joints were fused together. It took another 3 weeks of checks and scans to see what was happening but the fluid build up was just getting bigger all the time. I was told the baby would 'incompatible wth life' so we terminated. Very hard thing to do as you'll know but like you, I'm grateful a tough decision was almost taken out of my hands.

We had a post mortem and it showed that the baby had something called multiple lethal ptergia. It was caused by my DH and I having the same faulty gene, which we've been told is really rare occurance and tends to be found in couples who are related - which we are not.

Anyway, we had a 25% chance of this happening with any pregnancy but decided to go on to have another son who is now 8 weeks old . I really sympathise with you waiting for the post mortem results - you imagine all sorts of things. I really hope you get some answers and that it shows this was a one-off event. Even if the news is slightly worse, like for us, please keep hopeful that good news can follow from this.

My thouhgts are with you as I can understand where you are at the moment. If I can help at all then please let me know...

cantseemyfeet · 14/09/2007 12:39

I have jsut read ALL of this thread and realised that im about 6 months to late with post(DOH!!) Even so I hope that you are doing ok KatyH and that you have started to come to terms with your terrible loss. Just wanted tosay that although I went through similar, I went on to have two gorgeous healthy baby boys so there is light at the end of the tunnel.

MrsMcJnr · 14/09/2007 16:12

I am so very sorry KatyH, no experience but just wanted to add my support. Horrific decision to have had to have made - x

Prisma · 21/10/2007 20:55

Hi Chooster, thanks so much for your kind message. I've been wanting to talk to you as I've seen you on a number of threads and I can't help thinking the condition your baby had is most like the condition mine had. I'm sure I saw the word ptergia on the initial report we were given - my sons limbs were fused into position on the scan, hence I wasn't feeling any movement even at 21 weeks. The consultant thought the condition most likely to be a genetic problem. We've still not had the results of our post mortem, but have the appointment at the end of November. I'm terrified we will be given a high recurrence risk like yourselves, but the fact that you've gone on to have another healthy baby gives me hope. I have a healthy 2.5 year old DD and this was also my second pregnancy. Half of me wants to try again before we get the results so I can't be deterred by them. The other half of me knows how mental I am during the first 3 months of pregnancy and thinks I should wait. I think I've come through the whole thing pretty well, but the main fall-out is a tendency towards hypochondria or obsessive worrying. I suppose when one rare thing happens to you, it's almost rational to anticipate the worst in any given scenario. Of course, I will be worrying about this happening again regardless, but I don't want my DD to be an only child. Would appreciate your thoughts!

Prisma · 26/11/2007 21:03

Chooster, if you're reading this wish me luck - we have the appointment with the consultant tomorrow to discuss PM results and I'm terrified it's going to be bad news.

hertsnessex · 26/11/2007 21:07

Prisma, I hope tomorrow goes well for you.

Cx

orangehead · 26/11/2007 21:15

katy- The hospital should have scan pictures in your file. I found out at my scan that my baby had died and I was too upset to ask for a picture and they didnt offer. But I rang the hospital a few weeks later and they managed to get a picture for me. Sending you hugs

Prisma · 02/12/2007 15:30

Thanks Hertsnessex.

Jemblue · 17/03/2010 10:49

Hi KatyH,

I have just found out that our baby has some form of abnormality, we are waiting on test results. Our consultant has given a 90% chance that we will lose the baby before term or very soon afterwards.

I have been booked in for a medical termination on Saturday, I will be 15 weeks pregnant. I am finding the thought of terminating the pregnancy very difficult as I to have seen scan images of what looks like a normal moving baby. We already have a son who year 2 years old and I feel my priority lies to him, however I don't know how I am going to find the strength to go through with it.

How did you cope?