Termination of pregnancy at 24 weeks due to heart defect

[Lifehasitsproblems]

I live with this every day. 13 years ago at my 20 week scan I was told there was an echo on the baby's heart but that there was nothing to worry about. I had a three year old boy at the time and this was a much wanted second child. My gp suggested going for a private scan at the fetal medical centre to get a better understanding of what was happening. I was told that the baby, a boy, had transposition of the great arteries. In the womb he would be fine because he was receiving all the oxygen he needed from the umbilical chord but when he was born he would need key hole surgery followed by open heart surgery followed by regular further operation(s) on his heart to deal with scar tissue etc. He had a 59% chance of living to age 16. There was no guarantee of the quality of life he would have assuming he lived to 16 and beyond.

At 24 weeks (it took almost four weeks to get the appointment for the private scan and i needed a few days to make the decision) on Mothers Day, as it happened, I was taken for a final scan where they injected the baby's heart to stop it then induced me so that I gave birth.

The baby was tiny but perfectly formed to look at. We gave him a name and dressed him and ultimately we buried him.

My son who was three at the time vaguely remembers the little brother he lost. One of the biggest factors in making the decision was that I couldn't bear for my existing son to lose his brother. WIBU

[Whirlytastic]

No judgement here - only utter understanding and empathy. I had to make the same decision about my DD 11 years ago, at exactly the same point in pregnancy.

She didn't have TGA but another type of heart defect. I agonised about what to do. Went ahead with the pregnancy with extreme anxiety. It turned out that her heart defect was the least of it and she has many other medical problems. Her life is very hard. If I'd known then what I know now, I wouldn't have had her.

You were brave. You made the right decision for your family. I hope you can be at peace about it in the future.

[Mum4MrA]

Thinking of you Petmalex and all the other posters who have been through similar heartbreaks

[Ohyesiam]

Crying my eyes out for you.
Sending you so much love and strength.

[Petmalex]

Iamloading thank you for your much needed message. I am so sorry we are having to discuss this. I am so sorry for your precious loss. We have the option of hand and foot prints and pictures which I do want. The way I feel at the moment, I don't know whether I want to see her though. Did it really help you heal? I don't want an image in my head that I should never have had to see. But is that me being selfish? xx

[muddabitch]

I had to make this decision 19 years ago i was 25 weeks pregnant when i found out my baby boy had a muscle wasting disease and i made the hard decision to end the pregnancy.
I have never forgotten the choice i made that day even though it was the right one for my family and i will never forget my tiny but beautiful little boy.
i went on to have more children but have never forgotten.
You made a choice for you and your family at the time and you felt it was the right choice at the time.
It doesn't matter what other people say or think because until you get someone tell you that your baby has something seriously wrong with them they will never understand

[Petmalex]

FlissMumsnet thank you. I cannot start my own thread today but maybe another day. I've been reading a lot of people's stories and posts on MN ever since we got the diagnosis 10 days ago. I just had to join myself tonight. I'm so glad I did. I don't know anyone who has been through this so it's sadingly comforting to know of others xx

[glueandstick]

You brave brave mama. The most brave and selfless decision and the ultimate parenting one. You should be ever so proud of your strength. There is a lot of help on these forums- use it all. Xx

[Travelledtheworld]

I am sorry for your loss too and feel your pain.
My baby son was also born with transposition of the great arteries and other complex heart defects. He had major surgery at 14 days old and died at 23 days.
He was much loved during his short life.
I did not know what I would have done if faced with the same decision as you. I went on to have two other healthy babies who are now healthy young adults.
All my love to you.

[Whirlytastic]

Petmalex, when I was considering this, I thought I would want to see the baby. Because what was happening wasn't shameful or wrong - it was a baby who would struggle, but who I would want to acknowledge. But as you'll see from my post above, I made a different (and wrong!) decision. Hoping other posters who have been in the same exact position as you will be able to advise better.

[iamloading]

We felt exactly the same way @Petmalex It was only because someone recommended we held her that we decided to, if it wasn't for that I don't think we would have. She didn't look like a normal baby as her skin was very red. But to us that time spent with her was so important. They put her in a little knitted dress and cap and she looked so peaceful in her Moses basket.
You can also come back the next day and hold her. I was so shattered after delivery that I wasn't really with it, so I asked them to bring her back after a few hours once I'd had a chance to sleep. It took me from 9.00am (first pessary) until 4am the next day to deliver so I was a bit out of it with hindsight.
The other thing which surprised me was that labour was actually much better than the injection to lose her 3 days previously. Yes it hurt a lot, but the physical pain was comparatively simple compared to lying there whilst they injected her then having to carry her around knowing she had gone for three days. For me that was by far the worst moment.
I wish I could give you a hug, life is too cruel sometimes xx

[Travelledtheworld]

Petalmax thinking about you too.
Yes, it will be really tough and the first year could be grim.
But you will learn to live with your grief
So sorry.
Xxx

[sizeofalentil]

You did the kindest thing you could have done for both your sons.

You are a very brave woman and a fantastic mother.

[Loyaultemelie]

Life pp's have summed it up much more eloquently than I can but I want to express somehow, through genuine tears that you did the only thing you could faced with the impossible and you did it for love of all your family
Petmalex I just want to offer love and support for what you are currently going through

[sizeofalentil]

@Petmalex Your post made me cry - I am so sorry that you're going through this too. Sending you all my love and support and hoping you're ok

[ShesAYamEater]

op
i terminated for disability 2 years ago - very difficult and havent got pg since and as im now 46 i doubt ill get another go.

remember WHY you did it. and obviously YANBU. x

[ShesAYamEater]

oh - and i recommend finding ARC (antenatal results and choices) there is a forum just for bereaved mums who have made this choice. very helpful x

[Mummyoflittledragon]

Your decision must have been incredibly hard but it was the right one for you and your baby.

Petmalex. . I will be thinking of you.

[Hugsythespacecowboy]

I can't say I'd know what to do in the same situation, I'd likely keep the child out of cowardice of not being able to cope with letting them go. But I would never in my wildest dreams say you were unreasonable. I think you were incredibly brave.

[DamsonGin]

I hope everything goes okay for you tomorrow Petmalex and you are able to grieve properly.

I think that must be one of the hardest decisions to find yourself having to make, to all of you who have ever been there.

[intheairthatnightfernando]

petmalex I will be thinking of you too. Sending you love and strength through a day no woman should ever have to face.
OP you know you did the best you could with an unbearable situation. It was a decision made through love.

[Willow2017]

Petmalex
Thinking of you too. What a terrible ordeal to have to go through even though your decision is right for you and your baby.

[Bratsandtwats]

OP, no you were NOT being unreasonable. You made the right choice for you and your family at that time, but I am so sorry that you had to go through this and are obviously still feeling the effects to this day

[Bratsandtwats]

Petmalex

[Magicmonster]

I’m so sorry for everyone who has had to face such an awful awful decision. I don’t think it is possible to be unreasonable in these circumstances, as it’s such a personal decision and, I’m sure, not one made lightly. My daughter has different but severe heart defects which were not diagnosed antenatally. It remains to be seen exactly how her quality of life will be impacted. People sometimes say they are shocked that the hospital did not pick it up antenatally. Personally though, I’m so glad it was not as I can’t imagine many things worse than having to make the awful decision that so many of you have had to make. Thinking of you all (like so many others on this thread, through tears 😢)

[kesie123]

Petmalex - will be thinking of you so much tomorrow like all who are reading this. You have been so brave and with 14 years since my decision I've never regretted it with the information available at the time (medical advances change so please don't torture yourself in the future when the outcome/knowledge will be different). I didn't hold my son as my now exH refused and said we needed to have the same experience (ergh - that was never possible!) - I regretted immediately going along with his view (but he was an abusive bully and hopefully your DP isn't) so tomorrow I would suggest that you go with your own instincts, despite the terrible time. You're doing the right thing for your family and your unborn child - don't forget that in the tough weeks ahead.