Honest difficult feelings about terminating.

[FindingItTricky]

I am very sorry if I offend or upset anyone with this post, but it is very difficult to deal with these things in silence and I hope that I am writing to an audience which understands these terrible decisions and consequences.

We made the devastating discovery that our baby had T21 in July, and decided to terminate. It was really the only decision available - DH said he could not cope with continuing the pregnancy and we have a DS, so putting my marriage/family in jeopardy by holding out against my DH's views was not an option. Plus I had to consider the impact on DS of having a sibling who was not fully healthy. For various reasons - a close family funeral followed by a trip abroad for a close family wedding - the decision had to be taken quickly and there was less than a week between the scan (CVS later that day) and the termination and because the CVS results were phoned through on a Friday there was no opportunity to speak to a consultant/genetic counsellor etc.

If the decision had been solely for me to take, I would probably have continued with the pregnancy, because I know my (fantastic) mum would have supported me and helped me with whatever happened next. But the decision had to be taken for the best of the whole family, which I still feel was my duty as a wife and a mother.

But I am struggling with what I have done. Seeing T21 children around makes me feel guilty and cowardly (especially guilty if they look happy and content - I have killed someone who could have had a happy life; especially cowardly if they look like they have strong learning difficulties - who am I to "not want" my own child, whatever the problems?). At the family wedding very soon after the termination, we discovered that one of the girl cousins/bridesmaids on the other side has T21 and in conversations afterwards, my family (most of whom don't know about the decision we had to take, just know I lost a baby) were discussing her along the lines of "Her mum didn't know she was T21 but even if she did, how could she have done anything except keep her?" etc etc.

I just feel terrible about what I have done. I feel that I need to be forgiven in some way, but I cannot see who can forgive me. I do not find thoughts of the lost child being in a happy "other place" helpful - for me, my decision has ended that little person's life, which might have been a difficult life but could have been a happy life, and I am fully responsible for ending it.

My DH has not found the decision hard to live with and is a man of few words, so although he is very supportive and knows I am finding it hard, I can't talk it through with him. My mum more or less knows what happened but I know the decision goes against what she believes, so again, I can't really talk it through with her. I am coping with all of this but it's not going away.

I don't think we took the wrong decision, but I am feeling the heavy responsiblity of having taken it. Not sure what I am posting for - I just needed to say this out loud. I hope I haven't offended or upset anyone.

Far from offending, you have given us a great privilege sharing how hard this has been for you.
I can see that you feel terrible, but you are brave not cowardly, selfless not selfish and no one can know what they would have done standing in your shoes.
Don't let this consume you. You based your decision on what you thought was best for all involved, but don't bear this alone if you need to talk about it, especially if your mum and Dh aren't able to provide that listening ear. Go back to the hospital and ask for a contact for support. Look forward to your future with the family you have and be sure this WILL become easier to live with given time.
all the best x

hi hun, i can completely empathise with how you are feeling, we terminated a pregnancy back in March. She also had T21 and this, combined with the fact that she had a large cystic hygroma all the way down her back (which indicated a host of other health problems) led to our decision to end the pregnany. i have two other children, and my dh and I aren't 'spring chickens' anymore, and ALL of the decision we made was based not on how I felt, but on the effect it would have on our family and the also when dh and I had gone, the responsibility that would be left to our other two children (both quite young at the moment). Like you I feel guilty every day. Each week at work a young lad with T21 comes in for 3hours work - he is a lovely lovely chap, cheerful, kind and every time i see him i want to burst into tears for what we have done.

I think the only thing that gets me through is remembering WHY we made the decision we did, it was not about me (or like you I would have continued with the pregnancy) but about the whole family as a unit and how we would cope.
Your local hospital should offer some kind of counselling, it might be worth you looking into that as it is a decision that no mum should have to ever be faced with :( also ARC are a charity who help people with these kinds of decision and you may find them a good support.
And of course, you have posted this in completely the right place, and there are many of us here who have been through the same thing as you and can offer you 'virtual' support if you want to vent here. Sending you lots of hugs xxxxx

We all try and make the hard choices before we are faced with them. Thay are so much easier to make before thay are a reality. We were faced with making a similar choice but no fetal heartbeat was found. We would had chosen to also terminate. If the scan / CVS had been a day or so earlier and we would also be living with this choice. Sometimes the timing of things can be so sad.

Please remember that children with T21 are somwhere on a spectrum. We often only have exposure to the higher functioning end. Even if you had decided not to terminate you could have had a later miscarriage / stillbirth / neonatal death. The babies with T21 etc often have other associated problems.

Guilt is a natural part of the grieving process it maybe you are focusing your guilt mainly on the choices you made - don't beat yourself up about this.

I really hope this helps.

Katy xxx

Oh you poor love, you had to make a very difficult decision very quickly due to the circumstances you were in. I second the other posters that you def need some counselling, get to the gp pronto.

I definitely don't judge you for your post and I'm one of those who has a ds with Downs syndrome diagnosed at birth.

If you hadn't had the time constraints put on you with your families events you may have made exactly the same choices.

For the sake of your ds (who needs a happy mummy) get yourself to the gp and seek some help. I think that you and your dh need to sit down and have a really good chat about how you feel so he can help you too. Take care.

I have twice made the decision to terminate a T21 pregnancy - it is heartbreaking but I know it was the right decision for my family. We received counselling from the hospital (about 6/8 sessions) which helped us work through our feelings - one thing that has always helped was said by the hospital chaplin (who also gave us great support) he said that there is no right or wrong what is important is that a good decision is made. Some days I like to think that we would have coped with a child with DS but I am realistic that with no local family support, another DS to care for, elderly parents who will/do need support, we are no spring chickens and both of us have had depression I know we sadly did the right thing. What always concerned me most was not looking after a a child with DS but what would happen to them when they were an adult and we were in our 60's/70's. I have a relative with an adult son with DS and its only got tougher as he's got older and left the school system.

My thoughts are with you.

Thank you, thank you everyone for your responses - I was not expecting so much understanding and support. I am seriously considering asking the hospital for some counselling and I think I need to have the information which we would have been given if there had been more time to discuss what to do. One of the things I find hard is a strong sense that I should feel terrible and guilty about this decision, that I owe it to the lost baby in some way to suffer too. It is very difficult, plus we are TTC so that complicates the emotions too. Thank you so much - MN is an extraordinary source of understanding and experience even of the most complex, difficult things.

Hi FindingItTricky,no you are not offending anyone, far from it. I am sorry you are going through this. I ended a pregnancy in Feb last year at 22 weeks, my baby girl (first child) had severe brain anomalies, and the prognosis was awful. We didn't want our little girl to have a life of suffering, and decided to terminate the pregnancy. Those days are a bit of a blur even now, there was massive guilt, denial, anger and above all raw pain, like I'd never felt before.

I found massive support in here, I don't know what I would have done without it. I talked and talked about it, and there was understanding and compassion and women I'd never met before helped me get through it. You do need to talk about it, be it in here or with a counsellor and most importantly, I think, with your DH. It's an awful situation to have to face, there is a lot to compute and you can't do it by bottling things up.

Above all, please remember that you did the best you could in a horrible situation, you didn't have a positive choice and you had so much to consider. I've felt the same for ages - that raw pain was the only connection I had with my little girl and that I couldn't let go. Now I'm in a different place, mostly due to having a gorgeous DS who is 8 months, and being able to find a different perspective. I generally don't feel this raw pain anymore, although there are days when it unexpectedly comes back, but I still feel connected to my lost baby, just in a different, more accepting way.

I had a medical termination and could hold and name my baby. Did you have a surgical termination? It might help to think of a name for your baby and maybe write a letter or do something in memory, if you think this would help. Don't feel like you have to though, just do anything that would work for you, there are no rules. Be gentle to yourself, you've been through a lot. xxxx

Hi FindingItTricky, well done you for being so honest about your feelings, we had a termination a few years ago for heart defects and I still have unresolved feelings about it now that I have never shared even with DP.

My only offering is that I think on the whole people make the decision that is right at the time - but that one of the most important things isn't necessarily knowing the decision was right, but feeling that you had enough time and information to consider the options and how you felt about each one.

I think it's very wise to go and go through that process now, to lay these feelings to rest and find a place of acceptance for yourself and the decisions you took as a family.

Good Luck x

I'd second suggestions for counselling if you are having trouble coming to terms with your decision. I terminated a pregnancy a year ago at 14 weeks for t21. I had a previous termination at 26 weeks for hrhs a few years ago. Because of this previous experience I think I had a good idea how I would feel and the trauma of the first termination meant I dealt with my feelings pretty well (or am good a repressing them).

I found it helpful to think that any grief and regret I had was natural and also a way of showing respect for the life that could have been. In my view this shouldn't be an easy decision it is about life and death and it is inevitable that strong feelings will accompany and follow a termination. With my first termination it took about 6 months for me to pick myself up off the floor and I am sure that a lot of my recovery was linked to the fact that we had conceived. Give yourself a break it is early days and if counselling helps you sort out your feelings then go for it.

For what its worth my dh and I were in a similar position. He doesnt do emotion and categorically wanted a termination and I was in two minds. It was a baby we both had parental responsibility for and parenting decisions are made by both of us so ultimately we both decided that this was the best choice for our family. xx

FindingItTricky two things.

Firstly, you did not make this decision on your own, it seems to me that your dh made it impossible for you to continue with the pregnancy. Your ds would have suffered had you continued so you would have had feelings of guilt no matter what you did.

Secondly, while many children with T21 do very well, there are also many who don't. You have no way of knowing how healthy your baby would have been and how long he/she would have lived. For all you know, your baby may not have made it to term.

I do think that counselling from someone impartial would probably make a huge difference to you.

Take care of yourself xx

Hello - Not sure whether you will read this as you have had so many supportive replies. I might sound a bit harsh here, but I'm being honest. In Feb of this year we too found out our baby had t21 - there was no guarantee how severe it was, but being told a cardiac team would be at the 20 week scan to plan the surgery when the baby was born did not sit easy with me. A baby should be cuddled and snug when it's born - NOT whipped off to have surgery with no guarantee of success. The second influence in MY decision, was my 2 sisters who have mild/moderate learning difficulties. My mother died when i was very young, so when my father goes, I will be their guardian, and they have their problems - I know they will at times put pressure on my marriage and my daughter. One day your other child WOULD have had some responsibility for your t21 child, no matter what others say I actually think this is unfair on the older sibling - you cannot guarantee that you will be around for years to look after your children, normal or otherwise and you have to ask who would take over in the event of you not being around??? I was worried my baby would end up in a 'home' at some point with no one actually loving my him - everyone in life deserves to be loved, and again, this was not something I could promise my child long term. I have also heard of downs children/adults being abused in some way, they are vulnerable members of society and there are those who will, and do target them - it's a cruel world, could i risk that??. I do not regret my decision, and it was my decision - i see it as my body and trust me, if I 100% wanted the baby, I would have had it no matter what my husband said. Be strong, it WILL get easier - I was told by 2 women who had been through it that it is as least 6 months before the terrible feelings subside, one said more like a year. I am p again and am TERRIFIED, but I know i made the right decision for me. I regret the situation and I regret I could not give my baby the simplest of things - a normal existence, but i've got hold of these feelings, faced them head on and gone and got a horse, taking back up my childhood hobby - which my husband does disprove of, and I truly dont' care! Maybe do something that will take your mind off it - and good luck:) it's a hard time, try not to beat yourself up too much, after all what's done is done, and you'll never forget, but there is no point crushing yourself over it. Lots of hugs and best wishes xxx

I am in bits. We had our combined blood tests and anomoly scan results yesterday and it showed serious abnormalities and high risk on trisomy 13,18 and21 so were having cvs in the morning to confirm diagnosis. I really want it to be a black and white, baby won't survive but I know in my heart it's not as where there is life there is hope. It looks so bad it would be quicker to list what was right with the scan than all the things we saw wrong, but the heart even though it has only two chambers instead of 4 was beating and the arms and legs were kicking its just so hard to know, as I think I do know, that this baby will not survive
. I wish and pray and hope that we don't have to make the choice to terminate and that nature will take its course sooner rather than later but I do fear that we will be making the awful decision to terminate or not.

We have a son and my head says its better for him not to see mummy go through pregnancy and get nothing at the end or to get grief at the end, and to get the grieving out of the way now, but in my heart, I wander if life ,no matter how compromised and what end it comes to ,could enrich his life in some way.

It's just so very raw and so complicated I've googled so many searches and all I find is medical information about the procedures and possible conditions, or rightous ethical papers. I just need some practical advice ladies. Don't worry we will make our own decision but I am a great believer in talking about whatever were going through and dealing with feelings as they come up so that whatever we do we can make peace with our decision. Please share your experiences and thoughts. And excuse my garbled writing I really am in bits.

dear needsome, I'm really sorry you've had to spend Christmas waiting for this news. Have you had your results yet? There are a couple of threads that might help. Please come and talk to us if you think it might help, whatever you are thinking and feeling right now, someone else will have had those thoughts and feelings too. Everything you are going through is normal.

The threads are this one, where there are some women who've terminated for heart abnormalities, here and the other one is this one waiting for results

Slightly different but wanted to share my story. My husband and I had just got on the straight and narrow finacially and mentally for myself. We were in a extremely happy place and with three young children another child wasn't on the cards at all. In fact DH had his snip appt approaching. We had a drunken night out and one thing led to another. I rushed out first thing for the MAP the next day however sadly I still fell pg. I mentally could not cope with the thoughts of another child at first. But it was more than coping it was money and space.... career getting back on track...having our marriage back on track.

My reason for abortings were totally phased by what was the best for everyone and my health and since then its proven to be however I often sit and cry and feel like I made the wrong decision. I didn't but I long for that child so badly I feel raw inside. I would by now have my child only months old in my arms but my very much loved three children would most certainly be without alot by now and my career which has turned our lives around so much wouldn't be happening. I guess what I am trying to say is that nomatter how much support you have (like you my husband found it very difficult and is also very supportive) it will always hold a raw spot in your heart.

I at first hadn't shared this with my mum who I am extremely close to and that was making me so so much worse, to the point that I was breaking down all over again. Turns out that I was being silly as not only was she incredibly supportive, she had to go through similar when I was a child.

I wish you all the comfort in the world as you must be feeling so lonley, there seems to be some lovely supportive women here who will know just how you are feeling and I hope that their words can help you somewhat. All the best for the future

I forgot to mention that I was sadly informed that the pregnancy was a very threatened one and to expect to miscarry very soon. That was my only comfort that I had done the best thing at the time. Anyhow I will leave this thread now as its slightly different circumstances. Good luck to you all.