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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

High NT and leaky heart - devastated

17 replies

Jubilee2012 · 25/04/2018 20:40

Hello all
Please be kind. I had my 12 week scan yesterday and sadly the NT is a lot higher than they would like at 5.8mm. We were sent back in today for a CVS - and the consultant saw that there is also a leaky heart on the left side and a leaking liver. All of these are strong indicators of downs.

We have to wait until Monday at th earliest for the results. I feel absolutely devastated as I naively thought when I heard my baby’s heart beat all would be ok. We have been told to prepare for the worst but how do I do this. I can’t stop worrying if my baby is in pain or what is going to happen.

Just wondering if anyone else has been through this.

Many thanks

OP posts:

Aw12345 · 25/04/2018 20:58

So sorry for you, don't have any wisdom to offer but really hope everything turns out to be ok :-)

pumpkinbump · 25/04/2018 21:29

So sorry to hear this. I can't imagine how this must feel. I don't have any advice but I hope you get some words of hope when you have the results

WelshMammy123 · 25/04/2018 21:58

Hi,

I'm so sorry to hear what you're going through. We went through similar a few years ago. We went to our 12 week scan and baby had an NT measurement of 5.8mm. We had the CVS and a more detailed scan and unfortunately it wasn't good news for us as they showed that the baby likely had a lethal skeletal dysplasia.

It was a truly awful time and the waiting to find out was terrible. I remember it took 4 weeks in total before we got a definite diagnosis.

I wish things had been different but unfortunately for us our baby's condition wasn't compatible with life so we made the heartbreaking decision to end the pregnancy.

It was the hardest thing I've ever been through. I really hope things turn out differently for you. There is a great organisation called ARC (antenatal results and choices). They have a helpline you can call as well as a website and forum. You might find some comfort in reaching out to them x

JacintaJones · 25/04/2018 22:01

Hi Jubilee

I'm sorry I have no experiences to add but I really hope that everything turns out to be ok.
for you x

Original poster

Jubilee2012 · 25/04/2018 22:06

Thank you all for your kind comments. I appreciate them.

Mammy123 - I am so sorry for what you went through. It really is horrendous isn’t it.

OP posts:

Claire90ftm · 27/04/2018 21:17

I'm sorry for your scan results. Personally, for us, we decided that if our baby was shown to have Downs Syndrome, we would still continue with the pregnancy. And this is seriously just my opinion, not what I think others should do, but I don't think Downs Syndrome (if that is what it is) is a severe enough disability to warrant termination. I wish you all the best of luck and I hope things turn out OK

Original poster

Jubilee2012 · 28/04/2018 13:29

Thank you Claire. And all others who’ve commented.

We have the first set of scan results and they confirm the baby has downs. This is something we both feel we can cope with. The concern however is the consultant has said the baby has a leaking heart and liver. We are back in hospital on Monday to try and get some more information as to what this means.

I feel in complete shock. I thought this weekend I would be sharing my lovely news with family and friends.

OP posts:

TinyTerror1 · 28/04/2018 15:02

Jubilee so sorry to hear what you're going through. I was given a high risk of Downs and like you we felt that was something we could cope with in itself, but if baby has severe complications it's a much more nuanced decision. Thinking of you and I hope it turns out to be less serious than it sounds at the moment

UnderTheF1oorboards · 28/04/2018 22:17

Congratulations on your baby OP. I really hope the heart and liver situation is ok. You'll be on an emotional rollercoaster right now, maybe this will help. I have a wonderful 7yo DC who has Downs. Do PM me if you have any questions x.

Lovelily2016 · 28/04/2018 22:31

I'm so sorry you are going through such a worrying time. I found out at 13weeks that our baby had down syndrome. We found out at 20 weeks that she had 2 heart conditions. A plan was put Into place for what would happen after birth and we went to see the hospital where she would be treated. I had her via c section at 37+5 and she was born screaming lol. She was taken to the incredible Royal Brompton hospital and had heart surgery to repair her AVSD (one of her heart conditions) she didn't and still hasn't required surgery for the other heart condition as it turns out it's not close to being as bad as they thought whilst I was pregnant. She is now the happiest, most cheeky 2 year old who is doing amazingly well. They can't see the heart in a scan clearly until 16-20 weeks. Also you may want to take a look at a page called positive about down syndrome. I really feel what you're going through and I'm so sorry as it is such a worrying and scary time. Please feel free to dm me if you want a chat or ask any questions. Sending love x

dontputmedown · 28/04/2018 22:43

Congratulations on your baby. There is an organisation Down's Heart Group who I'm sure will be able to give you up to date relevant information and you may also want to join a closed Facebook page for parents who have had a positive result of baby having Down syndrome.

www.facebook.com/groups/FoDPregnancySupport/
As another mum has said there's a website www.positiveaboutdownsyndrome.co.uk which is written by parents for parents and includes stories similar to yours - ante natal diagnosis and concerns re health.

I hope further scans bring you reassurance and you are able to enjoy your pregnancy. At the moment you must feel overwhelmed and in shock, and there's a lot to take in and to adjust to... My son who has Down syndrome is now 13 and I'm happy to answer any questions you may have - so please just message....
Take care xx

Original poster

Jubilee2012 · 28/04/2018 23:14

Thank you very much all for the helpful websites. I will take a look. I am so grateful for the support on here.

LovelyLily2016- I am so so very happy to hear your daughter is doing so well. Xx

OP posts:

Nightmanagerfan · 28/04/2018 23:24

I’m so so sorry. We literally went through the same situation this last week - 12 week scan and NT 4.6mm, leaky heart (tricuspid regurgitation) and Down’s risk 1:5. We had CVS the same day and got the results 48 hours later, confirming downs. We were devastated and while I had always thought I’d continue in those circumstances, DH and I made the decision not to continue. I had a surgical termination yesterday. (We are at Kings in London which is why it all moved so quickly.) we are heartbroken. I had some good advice on here and someone said that whatever decision we made would be the right one for our family - I think thats so true. Whatever decision you choose will be right for you. Sending so much love - it’s super stressful and I completely understand the roller coaster of emotions.

curliegirlie · 29/04/2018 10:39

Jubilee2012 this must have come as an awful shock to you and you must be feeling all over the place, but please don’t panic. My dd has Down’s Syndrome, is now 2.5 and is doing brilliantly, getting closer to walking, has loads of Makaton signs, and also started saying lots of words in the last few months. She’s been lucky enough not to have heart issues, but we know plenty of kids with DS that have done; very scary at the time, but they are now doing really well.

The Future of Down’s FB page is also a brilliant source of support and also look at blogs/pages such as Don’t Be Sorry and Lovelily (isn’t that right, Lovelily2016 😉).

Congratulations and good luck

Well done UnderTheF1oorboards, Lovelily2016 and dontputmedown for signposting all the important links 😊

UnderTheF1oorboards · 29/04/2018 18:48

Let us know how you get on tomorrow OP.

There's so much that medicine can solve these days, if indeed anything needs solving. My DC has 2 separate heart defects which were serious enough for the hospital to list him for open heart surgery when he was one. We got as far as having the pre-op and were literally just waiting for a date to come in for surgery when they decided at the last minute not to operate, and instead to monitor him and see. Both heart defects have now resolved spontaneously to the point that they're barely detectable even on an echo.

Here's a bonus that the doctors won't have told you. Did you know that adults with DS don't get solid tumour cancers and that children with DS who do get leukaemia (a tiny %) have a better recovery rate than typical children? There's research going on in the US into how the 21st chromosome might be able to help beat cancer in the typical population.

Unfortunately some of the most scientifically advanced foetal medicine units in the UK have the most out of date ideas about what a life with Downs is like these days. There are lots of us Downs mamas here if you need support, and on the brilliant FoD. The Down Syndrome Association will be able to put you in touch with your local RL group too.

JacintaJones · 30/04/2018 11:12

Best of luck for today Jubilee

BettyPitts · 30/04/2018 11:25

Good luck today jubilee, I'm thinking of you

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