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Termination of one Twin Rss

Hi,
I am pregnant with beautiful twins, and last Friday my Husband and I went for our 20wk scan. To find out that Twin 2 has a heart defect, and that we would have to wait until Tues before speaking to a baby heart doctor about the options we have.

So, it would have had to be the worst weekend ever. Only my family knows, and it is just like a bad dream.

I was hoping for good news, but the heart doctor explained that our little baby girl has only one pump in her heart (where we all have 2 pumps) and all the tubes in her heart are on the opposite side, like a mirror image. This seems to have also caused her stomach to be on the right side (instead of the left)

So, we could give our little girl 4 operations, but it will never be fixed or repaired. And the baby will always suffer problems such as, schooling,education, no exercise, strokes, blueness, heart ryhtmic prob, valve leakage etc. It is just not fair to bring a child into this world with such severe heart problems. She would never be able to go to school, play in the backyard..............

Tomorrow we are seeing a specialist ob about termination of one twin. The risks are high but we are hoping as our twins have separate sac/placenta the risk should be lower.

I know this is the right thing to do, but I am struggling with this a lot. I can feel both my babies kicking, and it is killing me knowing what we may have to do.

I just keep trying to remind myself, it is just not fair to bring someone into this world that will always be in pain.

Today I am 21wks so time is not really on my side. Thanks for letting me vent!!!

Vig
[Edited on 12/06/2008]
Hi,

Reading you story made me feel like hugging you! I am 24 wks and 2 days with our twins. This is such a terribly hard decision for you to make. Take as much time as you possibly can.
Remember that you are not alone - and while I don't know what you are going through I can only imagine if I was in your situation how hard this would be.

Thinking about you and your family.

Rosie

Rosie

Thank you both for you best wishes

The four operations are done to help the little one live a bit longer.
One is done at 1-2days after birth (which is a high risk operation)
2nd is done at 1-2mths
3rd at 4-6mths
and 4th a few years later.
The doctor we spoke to was a Paediatric cardiologist and he explained that the operations and recovery stages are nothing to compared to the life this little one will live

By only having one pump in the heart, the blood which pumps to your head/toes/lungs and body is all coming from one place, and a heart can not run like this. I was hoping they could split the heart and try and move the valves. But it is non repairable.

Even with a heart transplant they normally only last for 10yrs, and it is only the medication which keeps the heart going. Most people will reject the heart. And the wait for this is enormous

The Dr tried to explain to us that the child will not be able to exercise, play, and will constantly be struggling to breathe.The long list he gave us was not what may happen to our baby, it will.....

I have done alot of research on heart defects and on all the cases I have found, none have had the issue our little one has. The worst is that there is no reason, it is not chromosonal or hereditary. Just a heart that never developed properly.

When you find out your pregnant with twins, you are so nervous as it is such a big challenge, but then you start to love the idea and how great it will be. To loose this now is devasting.

Vig
Hi Vig,
I am so sorry to read about your story and the problems your little girl is faced with. I don't think there is any thing i can say to make it easier for you. I had to have a medical termination last novemeber. i was 14wks and found out that our little girl had a condition called anencephaly, this is where the scull doesn't form and there has been no case reported where a baby had survived this condition. It was definatly the hardest decision that we have ever had to make but there was no other way. I guess all i can say is do what you feel is right but also remember that other little mirical inside of you, you have to be strong for that one. I truely hope that every thing works out for you in the best way possible. If you ever feel the need to talk or vent or cry or what ever you can always PM me on here and i will get back to you ASAP. You will never forget your little girl as she is already such a huge part of you. The pain for me still hasn't gone away and i think about our daughter every single day but I can tell you that the pain does get easier to deal with. Good luck with every thing. take care honey
Liz

Thanks Liz I really appreciate your kind words.

We saw the fetal medicine specialist this morning, and she does not recommend we terminate the pregnancy now as the risk is too high for our other twin.

So she is recommending we proceed to 30-32wks, have the termination procedure, and if there are any complications I can deliver to other twin at that stage. If we do the procedure prior to 30wks the risks are too high. She is prediciting that I may have a c-section at 36wks.

At this stage I will have to have a funeral for my daughter with the heart defect however my other baby will be safe and well.

This is really hard, but seems the only safe thing to do. We are seeing 2 pshyciatrists and a social worker next week to discuss. they normally only do these procedures with twins were one has a severe abnormality.

Thanks Vicky
I dont know what to say, this would be so hard for you and your family.I know its not nice to talk about because you should never have to bury your children but my sister gave birth to her Daughter who was born sleeping at 39 weeks no reason why but when she was buried it was a very hard day and still is but she brought her daughter a mother and daughter necklace and Tiana has one half and so does my sister but i hope there is a miracle but in your post its for the best what you and you husband decide i wish you all the best and cry as much as you want my sister tends to build it up. xoxo
I am so sorry to hear what you are going through. Last yr at 20 wks pregnant i found out we had TTTS. Our babies were identical (1sac 1 placenta) We were offered the chance to terminate but it would have meant terminating both. Anyway we decided against and to let nature take it course. As one twin was a lot sicker than the other we had laser surgery on the placenta which should discconnect all flows between the babies. Sadly one of our babies did pass away later in the pregnancy, and being in the same sac i then had to carry both until our surviving baby decided to come out a few wks later. We now have a beautiful 9mth old girl. Please do what you feel is right, dont let anyone pressure you into making a decision, and NEVER feel guilty for the decision you make.

Take care of yourself and wishing u all the best.
as a mum to twins I feel your pain in the decisions you have to make. You're surviving child will always be a twin, and you will often watch them and think of your angel child.
If they are leaving things be to 30weeks to ensure the safety of one twin why don't they let you go to "term" and then let your little one pass away naturally. Apologies if that sounds nasty, its not meant to. Take care Bec
Hi,

Bec, we asked the doctors the same question. They have told us it would be inhuman to do this, as the child would be in so much pain they would have to start the operation process.

If however I go into preterm labour at the 28wk mark before the procedure both will be born. Unfortunetly our daughter will not survive as they can't do heart surgery on such a premie baby, and would therefore pass on but in a lot of pain.

I have my first lot of appointments with social workers, psychiatrists on Wed.

Vic
I am so sorry to hear about your story. I hope THe other little bub os doing well. I am so sorry to hear about your little girl.



Forever in our hearts....

Hi,

I went for our first doctors pshy and social worker appointments yesterday. It was very uncomfortable. These doctors are putting their opinions to the ethics committee, about whether we can terminate our little girl at such a late stage to save the life of our other twin baby.

They ask questions about our family support, our lives as a couple, even cases of depression/anxiety in my family. Where we grew up, our relationships with our friends. How I will cope with this loss, funerals, birth, grieving.

It was hard, but Hubby and I were prepared and honestly had spoken about a lot of these issues.

One more pshy appointment on Friday, and then the ethics committe meet next week.

Vic
Hi Vic,

I am so sorry that things have turned out like this for you and your family.

I can only start to imagine the pain and fear you are feeling.

Im sending lots of love and hugs for you and your family,and tons more for your prescious babies.

XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOX
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