High NT score, now possible heart defect

[Clare33]

Hi everyone,

I am heartbroken, I'm typing this at 4.30 in the morning with tears in my eyes.

I am 20 weeks pregnant with identical twins.

At the 12 weeks scan we were told one of the twins had a high NT score meaning a 1 in 92 chance of Downs, at the same time we were told Downs would be unlikely as the other twins NT score was fine and she had a 1 in 1500 chance, as they have the same genetics what one has the other should have so Downs was unlikely.

Anyway because of the high NT score we have been seeing a consultant every two weeks, everything appeared to be fine until yesterday.

One twins heart was fine, the other she couldn't see so clearly. From what we understood she couldn't see the tubes coming out of the heart clearly, she did say it could be because of the way the twin was laying but it could also be a potential problem so we now have to wait for an appointment to see a heart specialist in Bristol.

The consultant did say she hoped she was proved wrong and it would be peace of mind for us.

I am absolutely beside myself with worry, nothing else in the world matters to me right now apart from my two babies being ok.

How I am supposed to carry on with things until we get this appointment which could be weeks away?

This is tearing me apart, I don't care about anything else at the moment, my job, moving house, money, any of it, I just need to know my babies are ok.

Thanks for reading.

Clare x

 

[chickadee1990]

Hi hun, im sorry your going through this, there isnt a lot I can say to you as i havent been in your position. But is there any chance you can book yourself a private scan and then youll be able to see babies again for them to no about the heart? Its very hard about the downs thing, but remeber thats your baby and when they come out you will love them none the less/

here if you need to chat xxx

 

[Applecrumble]

So sorry for the state your in, and completely completely understand where your at...however it does sound like they are being cautious rather than know for sure! I suggest as your worried, not sleeping and not functioning because you cant think of anything else. Call the midwife and ask for a rescan..agreee you could go for a reassurance scan privately. I think you will be surprised how quick this referral comes.

I know this is just my take on it...but i take it your baby has a good heart beat? Which is the main function of the heart so the tubes must be working to some extent...

 

[Clare33]

Thank you both for your replies, would you believe I got a call today and we've got an appointment at 12 tomorrow! We're so please to have an appointment come through so quick, I really thought we'd be waiting for weeks.

 

[Melily24]

Sorry to hear this Clare, hopefully baby was just lying the wrong way and you will receive good news tomorrow. Big hug. xxx

 

[monsterpickle]

Aw hugs Clare.
My SIL had identical twins and they thought they would have loads of problems when she was pregnant.... they thought there might be disabilities and all sorts.
Fast forward to today and they are two "normal" healthy, bubbly, mischievous little 4year olds who have been discharged from all consultant follow-up care.
So, sometimes, even if the news looks bad, sometimes it can work out ok. I hope it works out ok for you
x x

 

[Applecrumble]

good luck today! thinking about you xx

 

[Lyllian]

So glad you got your appointment so quickly, though Im sure its been a long night for you. Fingers crossed all is ok and thryre just being over cautious. Be stalking for your update x

 

[Lyllian]

How did it go yesterday hun? X

 

[Nemmaj]

Omg Clare, I am moved by your thread and my heart goes out to you!
Of course nothing else matters at the mo,I have been in a waiting situation myself.... I used to think..."how can they be doing that" don't they realise my life has stopped at the moment! You will get through this Clare,you have to, you don't have any other choice at the mo! your mothering instincts will keep you going...
I hope you get an appointment ASAP...
Keep us informed
Emma

 

[Clare33]

Thank you all so much for your replies, it really means a lot to me and I'm sorry I haven't let you know how we got on sooner, it was good news!

The heart specialist was scanning the twins for over an hour! He went through everything very thoroughly and was confident there was nothing to worry about. The only thing he did say was one of the arteries on one twin was slightly large, he said that was 'allowed' as he could see the blood was flowing in and out ok but he would like to see us in 6 weeks just as a precaution. He said we could leave feeling assured everything was ok.

Myself and my partner are absolutely over the moon, the only thing is I know we'll be extremely anxious again when we go back in 6 weeks, what if somethings changed? I'm trying not to go down that road as I will drive myself mad. I have to keep focused on the good news we had on Wednesday.

Thanks again for all your replies, our next appointment is on the 17th of November, I'll keep you posted.

Clare x

 

[Applecrumble]

I have keeping my eye on this thread for an update...and am delighted to see that it was good news...over the moon for you.

Dont worry and its great that he has offered a follow up just to be on the safe side! You get to see your twins again!

Thanks for posting an update. Xxxx

 

[Melily24]

Glad you got good news!

 

[Lyllian]

Brilliant news so happy for you both...or all four of you rather! The follow up is probably only to reassure you . Try to relax and start enjoying your pregnancy again xx

 

[Nemmaj]

Great glad it was good news....
I have my first scan next week....I am a little neurotic with the what ifs...
Each day at a time for me....and trying to keep busy with all those jobs I've put off for yonks.

Keep us posted
Em

 

[hd2208]

So pleased to hear you got good news and you didn't need to wait too long to see the consultant. I'm a first time mum to be and got some very good advice from a wise older friend....she reckons that from the day you find out your pregnant until forever you don't stop worrying about your babies/kids, the worries change and they are different levels of serioussness but you worry about development in womb, then you worry about the birth, then you worry about first illnesses, common colds, will they walk when they should, will they be picked on at school, what happens when their forst love breaks there heart etc etc....obvs not in the same league as a heart defect but being a mummy & daddy is going to change the way we all think and we just want to protect them forever...the best thing we can do atm is to try and relax and make informed decisions about protecting them - getting rest mu;tivits etc....hope that makes sense, my brain is scrambled cause im a bit tired, lol!!

 

[Clare33]

Hi everyone,

Thank you so much for all your replies, it really means a lot to me. I have found you all so supportive and lovely on here.

Unfortunately we had some more negative news at the scan we had on Monday just gone. There is concern that Twin to Twin Transfusion Syndrome may be developing. In a nutshell it means that one twin may be getting more blood supply than the other, it has 5 levels of seriousness, the consultant said we're at level 1, if at all.

Due to the seriousness of TTTS we have to go back Tuesday for another scan, it appears that TTTS can develop very rapidly so we may be going for a scan every week from here on in.

We couldn't believe that we had more negative news.

I'll keep you all posted and thanks again for all your support x

 

[Melily24]

Ah, sorry to hear of this Clare. I know what TTTS is and I hope it stays at the lowest level for your 2 little ones. Sending you lots of strength, hugs and prayers. xxx