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

Thank you all for your beautiful comments and advice. I feel I am starting to heal a little already this evening because of you, although it's not over and there is a long long way to go. I never thought it evwn possible to feel these feelings. I am constantly searching for a reason and I know that's natural. I will sign off now. I will be back soon. Just wanted to thank each and every one of you for responding this evening. You have been an enormous source of comfort xx

@Petmalex - posters have suggested photos. Can I give you a bit of advice on that?

We left it to the bereavement midwife to take the photos (it was 22 years so no cameras on phones). If they offer that service, do take them up on it as they did a nice series of photos in a wicker carry cot and with different clothes. We had no baby clothes with us as we had travelled from Ireland for in-utero surgery and ended up having a termination as it was too late. It never dawned on us to buy clothes in the 3 days we had to wait for the induction.

However, only do take them up on the offer if they can take the photos quite quickly. The midwife was off duty when our baby was born so the photos weren't taken until the following day. Because of the lack of body fat, the skin tends to sag quite quickly after birth. He was perfect, except for the redness, when born but looked terribly saggy in the photos so I only looked at the photos once as they were so upsetting.

I'm rambling a bit but basically, either you or your dh should take photos quite soon after birth or, if neither of you feel able to do so, ask a member of staff to do it. Even if you think you don't want photos, you may in the future. It might be better to use a real camera, rather than a phone as having them on your phone is likely to be upsetting.

So sorry Petmalex, and also to the OP.

I can't begin to imagine how difficult and painful it must have been for you to make that decision. You were absolutely not being unreasonable. I'm sorry that you've had to live with the burden and grief of the decision for the past 13 years. You made a decision that you felt was the right one for you and your family, and you made it with bravery and love .

I'm so sorry, I didn't realise this was an older thread that.
Petmalex, my heart breaks at the decision you've had to make and what you're going through. My thoughts are with you

Petmalex. You have put the life and needs of your child before your own wishes and dreams. You are so selfless, and the perfect mother. Sending you a hug and wishing you strength and peace. Please be kind to yourself xxx

@Petmalex You are so brave. My heart goes out to you and your family. Be kind to yourself

Petmalex, I’m so sorry you have to go through this. It may not feel like it at the moment but it will get easier eventually. I hope tomorrow goes as well as possible and I’m wishing you lots of peace and strength.

OP, I’m sorry for your loss too.

I wanted to say to petmalex that I wasn't sure whether I wanted to see my baby when I lost him at 16 weeks, I told the nurses that and kept the decision open. Then the next day I decided to see him and they brought him in a little basket and I'm so glad I did it. I'm not saying that means it will be right for you but to take your time. I'm so sorry you're going through this.

And to OP, you did the best thing for your children, a really hard thing, I hope you can find peace because you deserve it xx

Petmelax

My advice for tomorrow is to go with the flow as much as possible. There is no right and wrong and there is no way to predict how you and your partner will react.

💐 I hope everything goes as well as it can tomorrow.

Petmelax sending you strength for 2moro and for those dark days which follow.

After 7 miscarriages I never expected to to terminate at 23 weeks. I don’t regret the choice I made, it was the hardest decision I have ever faced, but the right one. I do regret not holding my baby once he was born. All I have is a Polaroid the midwife took for me, 14 years later it still makes me cry.

petmalex
Your post has me in tears.
I’m so sorry for what you are going through.

Petalmex sending you strength and a hug. Such a brave and loving act. That's the love of a mother. Doing what is best for your daughter.

💐💐💐💐

Thanks for posting that *laminatefloor. My friend had Transposition also (has- I am just not in contact with them anymore). We knew each other at school. I felt so sad about this yet I didn’t want to say anything as it isn’t my place. The OP has been feeling so guilty and heartbroken for so long over a decision she made which was given to her as the best one. I’m just angered by the medical profession who make this black and white. It isn’t. My father was born in the fifties with half his heart missing. He wasn’t supposed to survive childhood. He’s still alive now and healthy.

laminatefloor. I am glad everything has worked out well for you and I fully understand the point you are making however I think the timing of your comment is incredibly thoughtless. The OP already feels completely devastated. You post can’t alter her situation other than to upset her even further. It comes across as cruel.

If you wanted to discuss your situation then I think it would have been kinder to start your own unrelated thread.

I'm glad you're don't well and have a good life laminate and know others in the same position. As you say, some do and some don't.

I can't imagine the choices that the parents

... that the parents posting on here have been taken lightly. If they continue with the pregnancy, that's a valid and okay decision. If they choose not too, that's also a valid and okay decision. For either, they'll need support and acceptance and that's the bit that's important.

*I'm glad you're doing well

Nice one, laminate. I'm sure that's helped the OP a whole lot. SMH.

There are many kids with congenital heart defects who have a whole range of other problems, disabilities, etc. Parents can't know how their child will be affected. It is their decision to make. Living with uncertainty, disability, pain, etc is very difficult. There's no right or wrong decision - only what's right for each woman facing it.

@laminatefloor - given that petamax has stated that she has already had the injection part of the termination and is undergoing the induction today, your post is incredibly insensitive and downright cruel.

As a pp suggested, if you wanted to discuss this, you should have started your own thread, rather than kicking a woman when she's down and who is already feeling traumatised by her decision.