Termination due to multiple heart defects at 21 weeks

[LondonBird]

Hi all

I'm new here, but have been lurking for a couple of days and this is the only place where I've found that this topic is really discussed in any detail, and then on a pretty old thread. I hope the following doesn't offend anybody.

I terminated a much wanted (TTC for 2 yrs)and much loved baby on the 6th March, delivering the baby on the 8th. I had been able to feel the baby from 17 weeks and just before we found out it was getting to be proper kicks. I'm not really sure why I feel the need to tell my story here, but I'm hoping that it will be another step forward in feeling better, and also my DH (who has been completely wonderful), is moving on and I still want to talk about it.

I'm actually doing OK, I went back to work after 4 weeks, and that was a big step forward. But I still have this huge sense of unreality, and even though I know that we felt we had no option, it somehow feels like it was some sort of lifestyle choice. Even though the baby was extremely sick, possibly wouldn't have survived to term, and then if it did would have had multiple operations even to survive, it wasn't that the doctors said what was wrong was incompatible with life, just the the heart was unfixable, and anything they could do would be palliative only and very difficult to treat, leading to any quality of life being extremely poor, and who wants to inflict that on their child. We get the results of the post-mortem tomorrow, and I guess that's one reason why it's all coming back. We'll also find out then if it was a chromosonal issue and something to do with us making duff babies, or if we were just unlucky.

For anybody who's been through a late TOP, you'll know that it is the most dreadful and physically grisly and gruelling process, and it's that that goes round and round in my head. There's a huge part of me that can't quite believe I'm not pregnant anymore, and that I actually made it/allowed it to happen.

Things I'm still finding v difficult are other people who I was pregnant with who still pregnant (not surprising really) and seeing friends for the first time - I feel like an exhibit in a zoo, though of course everyone means well.

Things that have been good (if it can be such a thing) about this have been that my DH and I have discovered new depths in our relationship and are closer than ever before (we have a pretty fiery relationship), and I have discovered that I am so desperate to lose the baby weight and get my figure back (I had eaten for Britain), that I do actually have the self-discipline not to eat biscuits all the time! Also we have been immensely lucky with the support of friends and family, many of whom actually took the time to write.

Anyway, I'm sorry this is bit long and random. I'm thinking about speaking to ARC, but really I am genuinely doing OK, so for some reason am hesitating, maybe because I do want to move on, and maybe if I keep talking about it I won't?

Thanks in advance for any thoughts / shared experiences...

PS: Has anybody noticed that the whole world is actually pregnant currently! (Or it feels that way.) As I type there is some film on with a pregnant woman in it....

{{{{hugs}}} I am so sorry I don't have any experience of this, I'm afraid, but I couldn't read what you posted and not respond in some way.

Hopefully someone will be along soon to give you lots of actual advice.

So sorry for what you have been through.

I wish I could say something to help.

Wish I could help but just wanted to say hi and hugs to you for all you've been through

I'm sure if feels too early to think about it but I know of a really good support site for women who are pregnant following a loss like yours.

www.spals.com

Hi LondonBird, sorry to hear that you are going through such a difficult time.
I had a similar experience at 24 weeks.
Support After Termination for Abnormality (SATFA) were very helpful - and have now been renamed ARC, as you mentioned. It was a fair while before I got in touch with them though - I just pretended to get back to normal as soon as possible.
I am just on my way out, but will come back to this thread later in case I can be of any help.

Hi Londonbird

How throughly awful for you and your DH. I feel so sad for you.

I had a late miscarriage at 20 weeks, it was all very sudden but I can recognise the trauma you talk about associated with the birth of a very small baby. I also have a friend who had a baby with a kidney defect that sadly had to be terminated at 23weeks.

I too had a fiery relationship with my DH but this drew us together in a way I cannot begin to describe.

I can also relate to the feeling that the world is prenant - i rememeber that too at the time (posh spice!)

This happened to me 8 years ago. I now have two lovely children. I still feel sad about my little lost boy but the cutting overwhwleming pain of the first month is gone.

I love him with all my heart - my lost boy - but he is part of me and part of my life that i carry with me wherever I go. A very special relationship of carrying someone who only breifly made it into this world is an honour and a privilege for me - a desperately sad one, but I see it as one of the most important parts of me.

sorry this is a bit rambly - I am putting children to bed whilst typing - just came on for a quick check through but couldn't let this go without saying something.

Will check in with you again.

Best wishes.

How are you today LB?

Hi LB,

I relate to you and am so sorry for your loss. I went through this too more than 5 years ago. DD had a severe chromosome disorder and was very unlikely to survive the pg/birth. I was 23 wks. I also recently lost a little girl to preterm birth at 20wks. (to give hope, I have 4 healthy living children also) I have found sands website/forum very helpful (they have a section for TOP)and also ARC who have an email group. I wish I could come and chat with you and tell you that the pain does ease and the guilt. I felt like you too and questioned and tortured myself over the choice we made. It made me very ill. The best advice I was given was to pretend the situation had happened to someone else. Would I judge them? No, so why judge myself. If we would have carried on we would likely have faced the same kind of choice at birth ie to turn off life support or have surgery etc. You loved your baby the most and made your decision out of love, always remember that. (((hugs))) xx

BTW I also feel everyone is pg at the moment!! It is so hard xxxx

LondonBird, I am so sorry to hear that you had to terminate your pregnancy
I had a premature stillbirth at 21 weeks nearly five years ago, so I do know what an agonising and hideous physical and psychological ordeal the delivery is.
I went back to work four weeks later too. I remember the feeling of unreality that swept over me at intervals for months afterwards.
I should think ARC will be able to provide you with an outlet to talk through how you are feeling on a one-off, or ongoing basis.
SANDS also provide a phoneline service too. (They have a forum as well these days but I would ring SANDS and talk to someone, personally).
I have talked about my experience a lot over the years, to a counsellor, with friend on here and in RL, and latterly to others who have experienced the death of a baby in similar circumstances, in the hope I can help them in some way.
Speaking personally, I feel I have moved on, as you describe it. I found it hard to accept that after my stillbirth, I would never be the same person again, nor would my marriage and my life ever go back to how they were. But you can and do assimilate your shock and grief into your new existence, you can and do laugh again, in time. The "exhibit in a zoo" thing really does recede in time too.

Marina - you put it so very - esp. when you say "I do know what an agonising and hideous physical and psychological ordeal the delivery is" that rings so true.

Best wishes LondonMama - there are people here who know what you are going through and we all know the pain you are in and want to help in anyway we can.

x

sorry to hear what you all had to go thru {{{{{{hugs}}}}}

no experience or advice but just wanted to say sorry.

LondonBird, so sorry to hear about this. I had a termination at 16 weeks for genetic abnormalities - it was horrible to go through. Just wanted you to know you are not alone. I was "lucky" in being earlier so I was spared the delivery - I really feel for you having to go through that.

In case it helps to give you some hope, that was my third pregnancy - two miscarriages before that. I now have a lovely six month old, who was born less than a year after the termination so there is a future for you. I was terrified that I too made "duff babies"! But for me it was just a run of bad luck and hopefully for you too. Even if there is a chromosomal problem, there are things that can be done such as pre-implantation testing in IVF which can help.

You sound amazingly together and I'm so glad you have the love of your partner to help you.

Hi LondonBird,

I was so sorry to read that you're going through such a difficult time and I can completely relate to how you are feeling.

I too had to make the heartbreaking decision of whether to continue with my pregnancy. I was 25 weeks pregnant with my beautiful little boy (Harry) when we found out that he had major heart defects that meant IF he did reach full term he would have had to have suffered numerous operations and even then his future would have been uncertain.

My DH and I made the right decision for our little boy; we didn't want him to suffer.

Please try not to let yourself think that your decision was a lifestyle choice. As a loving mummy you did what was best for your unborn child, you made this difficult difficult decision out of pure unconditional love.

Although the birth of our little boy was the hardest thing that we hopefully ever have to experience, I don't feel that I would have done anything differently. It was a nightmare and physically draining but also a surreal and serene experience.

I delivered Harry on 7th February 2007 and all I can say is that it does get easier and the 'up' days increase and the 'down' days decrease as time goes by. However the smallest of things can remind you. I went into mothercare the other day (to buy my new nephew a gift) and it hit me like a sledgehammer that the last time I went in there I was pregnant with Harry.

My sister was pregnant at the same time as me and she has just given birth to a little boy. This has understandably been so hard, but I have tried to put on a front for my family. I don't want to let my feelings affect their joy.

It's also hurtful when you feel that everyone around you has moved on and forgotten already. However it is just that everyone deals with grief in different ways.
My DH & I were always so close but I do feel that losing our little boy has brought us even closer, like we have an unbreakable bond. It has also changed us individually, we have lost our childish naivety and optimism.

Everywhere I look there is a bump or a new born and so I can completely relate to that feeling right now. The world seems to have gone baby crazy! You find yourself asking 'Why me'?

I haven't spoken to anyone at ARC, although they have been recommended to me. I find that being on mumsnet has helped me massively. The realisation that I'm not alone; I'm not the only one suffering (if that makes sense).

We received our results back at the end of March and were told that Harrys condition was 'unexplained' and 'just bad luck'. I will be thinking of you today and I hope that you can be given some answers to help you come to terms with your loss. And like Margoandjerry mentioned; there are things that can be done if a chromosomal problem is highlighted.

I hope I haven't upset anyone in writing this, but I couldn't read this thread and everyone's experiences and not reply. I'm also sorry it's so long!

All I can say is that it does get easier.. someone said to me that you eventually stop carrying them on your shoulders because you will carry them in your heart and that is so true.

My love and thoughts to you all.
xx

LondonBird {{{{{{big big hugs}}}}}}}} I am so sorry for what you've been through. Having been there myself. It will be 4 yrs on 22 June for when my son Robert was born. He had severe defects and also only 1 cm of fluid, so was never going to have fucntioning lungs so my DH and I also made that very hard decision not to prolong his pain.

Of course then you notice every one who is pregnant, has a newborn, etc. They seem to be everywhere. But I think because you notice them more. I remember that there seemed to be a huge number of storylines on TV that year with babies with problems/premature, etc.

I felt as you do, in wondering whether to contact ARC or not. I finally got to a point at about 6wks (after we had results from Robert's autopsy -- which they finally concluded it was my placenta that went wrong rather than severe chromosone defect) when I thought. I need to move on. I felt as if I could talk/think/brood on it forever. Or I could accept what life has given me and try to move on. Never forgetting him, but trying to incorporate the experience into my life. I did have my DD to look after (then 2.4).

Now I do have times of year when I think more of Robert, and I always remember the day he was born, and am not very happy that day. But I have come to terms with it. For me, he is mentioned with friends, never hidden, but not discussed a lot.

Now my second DS is coming up to 3 in July. And my family seems complete. Including our little one we lost.

I have a couple of friends who gave birth a few weeks before & after my giving birth to Robert. It took me a while, to accept these babies. And it was easier to accept the little girl, than the boy.

Whatever is going to make you feel better -- that is what you should do. This is such a personal thing.

Sorry for the rambling.

Hi Londonbird - have you had your results today? I'm was so sorry to hear your story and I really hope it was just one of those things.

Your feelings sound quite similar to mine when I had a termination at 21wks as my son had fetal hydrops and a condition called multiple lethal ptergia. Basically all his joints were fused together and he would never have survived, even if he did make it to term. I gave birth to him on the 18th December 2005. Like you say in your post it was the most agonising thing (emotionally) I've ever done and the longest couple of days in my life. I couldn't believe I was taking tablets to induce the birth of my son who was going to die. I empathise and sympathise with anyone who has ever had to do anything similar.

Afterwards my DH and I did a lot of talking and he also seemed to move on quicker than I did. I had the details for ARC for ages before I actually contacted them and although I only used the chat boards a few times I still look every now and again. Like you though I also felt I was doing 'OK' all things considering but still things got me down. Just like you it was babies being born at the same time but also the sympathetic looks from people. I guess I'm quite private but the rest of my family are very demonstrative. I just couldn't handle all their crying when I felt they didn't really understand what it was like. I still struggle to talk to my family about it to be honest although we all get on really well. The problem was I wanted to talk to my friends about it but felt I couldn't as they very quickly stopped asking me about it. It was just a confusing time all round really!!!

The reason for my post is really just to say that anything you are feeling is natural and others have unfortunately been there too. Its worht taking a look at ARC and make your own mind up about whether it will help you. I feel I have moved on but I think of my LO (DS2) often and I look in his memory box. For me now talking about it helps me move on if that makes sense?

I truly hope the condition your LO suffered was a one off. For us the post mortem indicated that this was a genetically inherited problem so we had a 1 in 4 chance of recurrence. If that happens to you too then please know that it can work out OK... I'm now 26wks with my third son and all the tests have come back clear.

Good luck - keep in touch to let us know how you are.

My goodness me - what an amazing place to find all of you. My DH was just looking over my shoulder and said 'that really is the sisterhood in action'! Thank you all so much for taking so much time to respond and share your stories, or just send sympathy. It does make the biggest difference to know that you're not alone.

The results from the pm were as expected - genetic one-off, no chromosonal issues at all, pure bad luck. I'm relieved as I was having nightmares that somehow the prognosis would have changed to not be so dreadfully poor. In terms of reoccurence we have a slightly elevated risk, simply because it's happened once, but that is about 2-3%, so not too scary. We will also be closly monitored in any future pregnancy with specialist heart scans at 14 & 20 weeks - the thought is just terrifying, but we'll cross that bridge when we come to it.

We chose not to find out the baby's sex, and for us he or she will always be the Minnow. (DH mad keen fisherman We are going to pick up the ashes this weekend and will scatter them at DH's mum's grave, so that she can look after the baby too.

I feel more at peace today. It's amazing how much of what many of you have been saying resonates so strongly. I was having a weep last night and said to my DH that I felt changed by the whole thing, like looking back is seeing a different person, and then I come on here and discover that's how so many of you feel.

So many things mentioned have helped, 2 things stand out; 1) that we made the decision out of absolute love and 2) to think about whether I would judge myself if I was another person, which of course I wouldn't.

Flumpytigger my heart goes out to you as well, as it's all pretty recent for you and with the heart problems, so similar to us. I can't imagine how hard it must be to have a new baby in your immediate family, I know that if it was me I would find that immensely painful. I guess all any of us know is that is does get easier with time.

Big hugs to you all
xx

Hi we were so happy to find out at 20 weeks we were expecting identical twins. I was nervous because they told us babies sharing the same sac one may be dominant. Our worst fears were brought to life 1 day ago at our ultrasound in the high risk unit. The ultrasound took what felt like forever, I was excited to hear the sex of our twins. The technician never once told me what they were she left the room and went to get the doctor. The doctor came in and pushed and looked and looked then shut everything down and said he would speak with me in private. I KNEW I KNEW !Something is wrong. He then informed that the smaller or the two twins has fluid all around it's heart, and the other twins heart is inflamed. He said neither will live,and gave me my options. Terminate or give birth to the one twin who would immediately need open heart surgery with slim to no survival rate. We already have two daughters and were told to think about the family we already have. I can feel them moving i want them so badly, but i know it is not my choice. This is the longest weekend of my life. I must contact them on monday, but we have decided it is only best as heart breaking as it is to let them goto heaven together. I will always love them and will never ever forget them. MY HEART IS BROKEN :(

I'm so very sorry you are going through such turmoil. Have the hospital offered you support over the weekend or directed you to organisations that could support you?

Please demand all the clarifications and support that you need to make this decision. It will help you enormously in the weeks and months to come to know that you were fully informed. There are so few black/ White decisions, everything feels like varying degrees of grey. You will need info and support to find your bearings.

Look up the ARC and Sands websites, both organisations have ways to put you directly in touch with women who have been in your position.

If you aren't familiar with mumsnet there is an antenatal tests/ choices topic. If you re post your story there I'm sure you will receive lots of support.

My thoughts are with you all x x

Hi Londonbird,

I know exactly how your feeling. Im 19 and this was my first pregnancy (unplanned) but I was so happy as I have been diagnosed with severe emdometriosis and was told it would be very hard for me to conceive. I had my 12 week scan and myself and my partner instantly fell in love!!!

At my 20 week scan I found out I was having a little boy who we named Oscar Jaymes, unfortunately we were told that he had an atrioventricular septal defect and I was given an appt. at the Evelina childrens hospital at St. Thomas' in London the next day to see a foetal cardiologist.

Things got even worse that day as I found out that my little Oscar had seven congenital heart defects!!! The doctor had never seen a baby with so many heart defects and wasn't sure what to do. I was told that there was an 80% chance that Oscar would live, so me and my partner dicussed what we should do and we agreed to further on with the pregnancy. ( I know it was the wrong decision now but the doctors were so sure that he was going to make it and I wanted to do anything to keep my little man alive ) anyway, they took my scans for research for cardio interns.

Two months later at 27 weeks I had another scan to check how Oscar was growing and that was all fine... until they told me that he had now developed a diaphragmatic hernia and his stomach was growing in his chest :( I couldn't believe it, I just got used to the idea I was going to have an unwell baby but now I was being told that I wasn't going to and I have no option but to interrupt the pregnancy at 7months. Looking at him when he was born he was so perfect and weighed 2lb 6oz. You would never have guessed something was wrong with him.

I'm so worried about future pregnancies even after finding out that it wasn't chromosomal!! This happend 4 months ago yesterday, I have an amazing family and my partner is the best but its always nice to know that I'm not alone and other women understand the sheer heartbreak that myself and my partner went through.

I wish no woman has to go through what we've been through but I will still say that I am a proud mum as even though I don't have my baby to see, I have him in my heart and to me, he was the most beautiful little man in the world.

xxx

Steph you do realise this thread is from 2007. Great reply but its an old thread

Even if no one reads it, its a load off my chest and anyone else (like me) see's this then its another person to relate to

Steph, I am so sorry to hear of your darling Oscar.

Here is a thread for bereaved parents.

If you wanted to copy and paste your post over, I am sure you would get a very warm welcome from other posters who have also found themselves without their child.