Oh honey, that is really tough, I hope you have some good supports around you at the moment.

It is so incredibly hard hearing that something is wrong with your baby, every parents worst nightmare. I guess really, the options put to you will be to terminate your boy twin - which has risks for the other twin too, or to carry on with the pregnancy. Counselling will be offered to help you work through the decisions before you, and in my experience the specialists are very good at giving you all the inforation to help you decide what to do.

I had a mum contact me through the multiple birth club (I am the contact person for twins with disabilities) after it was found that one twin had brain abnormalities. She and her partner chose to terminate, it was a very difficult decision obviously but was the right one for their family, gosh, I couldn't imagine being in that situation.

Thinking of you x

Callog - that wasnt me was it I recall speaking to someone from MTC when i had to make the same decision under the same circumstances. That was 6 years ago so probably not (in fact it is their birthday today).

MissTuffit, I am so desperately sorry to hear that there an an anomaly with your babies arms. Your head will be swimming with the info I am sure. I really hope the fetal medicine appt is soon!

Most people on here now know that I had twins 6 years ago. One baby was found to have a brain anomaly. I was most fortunate that I got the fetal med appt the next day (and only now realise how lucky I was!).

At that appt we have a really really detailed scan done. Their scanning equipment is more sophisticated than regular scanners.

We then had a really long discussion on what he had found, and what it could mean. I consented to an amniocentesis, to see if there were genetic problems that would make our situation (ie babies problems) clearer. I also had heaps and heaps of blood tests - to test for infections etc (as certain infections in mum - Im talking viruses etc can cross placenta and cause developmental issues). For me the amnio and bloods came back clear. I think hubby and I may have had a genetic workup aswell but I cant quite remember.

I had to return a week later for a rescan (to see if problem was getting worse or staying the same). It wasnt until after this scan (found it was getting worse) that a termination was discussed. I refused..... Had another appt a week or so later and scan said brain was even worse. At this stage I consented to the termination, which was offered for the following day. I refused, as I needed another week to process this.

Anyway, I really really hope that the rest of your babies health is intact. I am truly so sorry for what you are going through, you must be terrified. No woman/couple should ever have to go through this!

Sorry if I am being too forward, but may I ask, were both babies terminated or was selective termination offered? I am now 23 weeks, so I am guessing I am either beyond ethical guidelines, or will be pressed to make the decision quickly?

So. Much. [***].

I have been reading that there are couples who terminate for lesser limb reduction deformities (I hate the terminology) so I am aware that it may be an option. But I am not even slightly prepared for the reality of it being offered.

I love him so freaking much. We went through his initial scan DVD this weekend. I was able to isolate a shot of his wee hand, with its two tiny fingers. So heartbreaking and so incredibly beautiful and precious. My sons hand. Not some [***] monstrosity.

And then there is my wee woman. The one I have known from the moment of conception. The one I named and spoke to and felt move all along. I can't lose her.

I hate being in the lurch like this. Waiting for a goddamned appointment. I feel like I'm going through some kind of suspended grief. Like I can't feel sad, because what if it's worse. I can't move forward because what if it's worse? I can't get my head around it, and start bonding with my special wee man all over again because what if I lose him.

Big big hugs MT. I know with a singleton you can terminate right up until birth. No such ethical concerns.

If I was in your situation, I wouldn't terminate. I wouldn't be able to live with myself if anything went wrong (and we know it happens!) And I know from experience that scans do not ever give the full picture. How can they?

But I'm not in your situation. I will say though, that you would be surprised at what you can handle - when you think you can't. Having a kid with special needs is tough. But it's also really rewarding. Just this morning I was watching DS (5) interact with DD. They were on the couch, he was chatting to me and playing with her feet. She leaned in for a cuddle (won't do this with anyone else) totally melted my heart!

Are you able to follow up the appointment time? We had ours the same day as our 12 week scan when they first noticed something was different with DD

Hi MT. Sorry to hear about what you are going through!

What a difficult decision. I too wouldn't be able to terminate. But it us a very personal decision.

Just to let you know my story...

My dd2 was born last July. Natural drug free water birth. She was perfect, until 3 days old she started getting sick. A midwife noticed her breathing fast and her feet blue. She listened to her heart and could hear a murmur. We went for a echo to check what was causing it.

It went downhill from there. They discovered she had a LARGE VSD(Ventricular Septal Defect) and ASD. (holes in the heart). We were flown to Starship with more xrays, ECG S AND ECHO to confirm what was wrong. After days in NICU we were sent home to watch her get sicker and sicker before they would do either, in the hope that she would gain weight.

The weeks past with home care visits weekly and hospital visits overseen. All the while my husband worked 12 hr days, I was home with a toddler and a heart child that feed every 2 hrs, 24 hrs a day. I was emotionally drained. I have no idea how I coped. At 9 weeks old do she had a choking episode and we called ambulance. After a weeks stay in hospital they decided she was in heart failure and required surgery asap.

At 12 weeks old, a.d only making it too 4.7kg, she underwent open heart surgery. It was the worst day of our lives. She came out ok. Stayed in intensive
care for a few days then up to the heart ward on 23b.

It has been the toughest, worst 7 months of or lives. That fear if loosing her was there constantly. She is now thriving ands doing well. Yet I am traumatised, emotionally scarred. I will never be the same.

I feel all your ladies pain. Xxxx

MT, I was 'fortunate' in that one twin had already passed away at 18/19 weeks so he wasnt a 'consideration'. As in he had already died so he didnt factor in my decision. His death is what caused the brain anomaly in my surviving twin

My twins were born at 22 weeks so doubt that your gestation would be a barrier to that decision.

I think it would be important to you to wait until you have the full picture before you seriously consider your 'options'. You may find that if its only a limb deformity that you could continue (but completely your decision) however conversely if it becomes that he would, for eg, be severely disabled in other aspects that your decision may be different (but in saying that, this is a very personal, individual decision).

Its one helluva 'decision' to have to face. i spent weeks pondering mine and up until the very last minute was adamant I was keeping my baby. Terminating the pregnancy was without doubt the hardest thing I have ever done and 6 years on am still forgiving myself for that. On one hand I can argue that I did the right thing (autopsy revealed he would have been very, very, very severely disabled) but OTOH... who was I to decide for him whether to live or die. I dont think any decision is easy. I guess on here you can hear both sides of the coin - from people like myself who chose the termination route and people like Starry who opted to have her baby.

I do know I spent years terribly, terribly regretting my decision. However - I dont think I do anymore. Because I have come to realise that if i had 'kept' my son this this would have had far reaching consuquences - not only to myself and my partner, but to all the extended family. And I wouldnt have the 3 beautiful children I have today.

Its very very hard to reconcile 'terminating' a pregnancy. More so with twins I think - you are not only losing a baby but you are also losing the magic of twins. There is something exceedingly special and joyous about carrying twins - and its a devastating thing in itself to lose.

I dont know a great deal about your circumstance, but I do know that they can do 'selective reductions' irrespective of gestation.


I found it hard reading your last posts. I felt the same way. After a wee while I realised I just had to enjoy the kicking and bond with my baby, even though I knew I would lose him. Because I realised if I didnt keep falling in love with him then - then I could never bond with him again, IYKWIM? I used to lay for hours just with my hand on my belly feeling him kick. I talked to him all the time. Told him I loved him constantly. And I did, and I still do, dreadfully.

I didnt intend that post to come across that I feel like I did the wrong thing in terminating the pregnancy. I actually think I did the right thing, for me and for my baby. But it was hard, dreadfully hard. I honestly felt like a murderer and I wanted to go to jail (pretty much literally) and serve time for the crime I had commited. Except it wasnt a crime.... And I did what I felt was best for my baby. It wasnt what was best for me, thats for sure. I have never known such pain and sorrow like it. But I do beleive it was best for my baby. (but my babies abnormalities sound very very different from your babies)

you are not only losing a baby but you are also losing the magic of twins. There is something exceedingly special and joyous about carrying twins - and its a devastating thing in itself to lose.

^this. I can't envision only having one baby.

My partner and I stand on different sides of the fence. For him having a highly neurologically subnormal child seems to hard. For me it is having a neuro typical child trapped in constant pain and physical limitations that scares me. Particularly pain. Having grown up seeing my mother struggle through the pain of arthritis I am so very scared of putting my beautiful wee babe through constant agony.

I don't want to terminate. I don't want to have it mentioned. And yet I know that I will have to deal with constant guilt, constant pressure, other peoples opinions (especially within my own family) regarding continuuing with the pregnancy if the prognosis isn't good.

This is too hard. I didn't want to scan in the first place. I wanted my pregnancy. I didn't think knowing something was 'wrong' would be of consequence as I would never terminate any way. Now I am hanging on edge waiting for more diagnostics. Wanting to know more. Needing to know more.
Argh! And having to face the realities of the 'what if' scenarios. Utter shite.

Contemplating having to 'terminate' (hate that word) is not something anyone wants to consider/think about.

Also I think the vast majority, when they have not experienced the devastation of having to consider it, would always say "I could never terminate" The reality is, that the majority of women faced with the reality of having a disabled child, do decide to end the pregnancy - even those that previously stated they wouldnt. I guess its really tough to imagine what it must be like to be in that position - and its not until you are in it that the issues reach far far beyond what it appears on the surface.

I think its only natural to need to know the extent of what you are dealing with. Noone can possibly make an informed decision without those details.

I have absolutely no idea on where your thoughts lie - in fact you are probably completely up in the air, probably barely capable of functioning nevermind actually having calm and rational thoughts.

I had some pressure. As in I knew what my family wanted me to do. This didnt sway my decision. And they didnt push it at all. But I did know what they thought (that I should terminate). But as I say, this didnt actually factor in my decision (aside from taking thier feelings into account as one of the many many many factors that I were in consideration.

I do think it would be unwise at this stage to make any clear decisions until you have all the details. The wait must be killing you and it seems cruel that they are making you wait so long.

We finally have a response. 3 pm tomorrow. I am going to struggle to sleep tonight. And I'm bloody exhausted.

Ahh, yes, the sleep thing. The days you kinda cope, by filling the days with other stuff (avoidance tactics!) But the nights are long and lonely. I used to sit on the sofa most of the night, hand on belly, just feeling the movements and loving my wee man.

Sooo hard. Im feeling overly emotional about it all too as mentioned previously it is my darlings birthday today xx

No matter what the outcome is, you will have support on here at least

Happy birthday to your wee one.

Thanks MissTuffit - didnt write that to elicit any response though! Just explaining why this is at the forefront of my mind and why I feel so awful for you to be going through this uncertainty xx

Hope tomorrow brings some answers for you.

Miss Tuffit - will be thinking of you tomorrow at 3pm!

"I don't want to terminate. I don't want to have it mentioned"

Just to warn you that it will def be mentioned - many parents that I have talked to (am a nurse) that have had anomalies discovered on scans have still been stunned on how often it is mentioned in discussions - even if they have stated that that is not an option for them - just a heads up for you.

On the other side - have been to many mortality and morbidity meetings (discuss neonatal and antenatal deaths amongst health professionals) and the specialists often talk about how they need to stress the importance of considering it as the couple are in shock and so are only taking in a small portion of what is discussed. Hence the regular talk of it.

Big hugs

Big big hugs ladies, we go through some tough shite eh?

All the best for your appointment tomorrow MT. I hope you have great support people around you. Try and ask for help if you need it. Try to take your midwife to your appointment. It's great to have someone there who is not quite so emotionally invested. They will hear different things to what you do and you will be able to reflect with them afterwards.

Miss T, I hope you managed to get some sleep last night, I'm sure it would have been a very restless night for you to say the least. I'm so sorry for the turmoil you are in right now, it must be an absolute nightmare for you and your family.

I hope today's appointment gives some clarity as to your little man's disability, until you know all the facts you can not possibly know where to start with your decision making process.

Sparkle, sorry hun for the loss of your babies, it must have been a horrendous time for you. It wasn't me you spoke to, this mum already had a child with a brain deformity resulting in being severely disabled, so to face having another (and twins) was not something they could cope with.

Both of my twins have disabilities, one physical, one learning and behaviour. It is really, really hard, but I couldn't imagine life without them, they both have a lot to offer the world and their life is still great - harder than the average kid, but still great. It breaks my heart when they cry and ask why they have to be different, it is so hard dealing with that sort of stuff... I figure if I can get them through their childhood with a good self esteem then they have a wonderful life ahead of them. Not sure what I'm trying to say... well, having a child with a disability isn't a life sentence, it isn't all doom and gloom, yes it is hard, but also great. Disabled kids are a gift to the world.

Good luck for today Miss Tuffit, will be thinking of you

Our appointment confirmed what we had already expected. Our wee man has no arms. Two wee fingers on each hand, attached at the shoulder. There is no evidence of any other structural issues. As for physiological issues, we can't know until we are faced with our wee man in arms.

I am okay with this. There is no need for further scanning/testing in relation to his health. No need for concern regarding birthing him and enjoying our early days.

We are very pleased with the outcome. I am sure that there will be times when I struggle, there will be times when I am scared, and there will be challenges for our family and our wee man. But I am so very pleased that I will still have my boy, my twins, my family. So so happy.

Termination was discussed. Attempting to prepare myself for that made no difference. It was the hardest discussion I have EVER had to have.