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Pregnancy

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

Major heart abnormalities on 20 week scan

36 replies

Nikki2ol6 · 21/08/2016 15:36

Hello I am almost 21 weeks pregnant and we had our 20week scan a few days back and all was going great we were laughing and joking and how wiggly he was and how he was hiding his bits from us, then she went quiet and said she was getting someone to help her with the measurements. In came another lady and said is it ok for me to scan you. I said it was and she told me not to worry it's just my baby was moving so much they could not get a clear view of the heart. We accepted this as he was moving a lot. Then the First Lady asked us did we have anything we should tell her...... We asked such as what? She asked if our screenings came back ok? We said they did. She then asked us is there any problems with babies in the family. We knew they had seen something at this point and asked what was going on. They asked if we knew about holes in the heart. We do slightly I guess and know they can be ok so the relief came over is that's all it was!!! She then went on to tell us our baby's heart did not develop as expected and his vessels were in the wrong places and going the wrong way out. And one of the great vessels is enlarged. There is no great vessel crossover.
She said we had to see a specalist so in a couple of days we do and find out a lot more. In the mean time we are so so scared and worried. I read through my scan report and found words such as DORV and VSD, enlarged puloimotry artery and no crossover. Naturally I googled these words in a quiet moment of curiosity, page after page of terrifying results came up of open heart surgery at birth, blue babies, shunts and umbrellas. These are things the midwife who scanned me mentioned to us but not in such scary detail she said maybe an op, maybe he will have a blue tint at birth which won't go away.
Is there anyone been in this situation who can help me through this awful scary nightmare?

OP posts:
Nikki2ol6 · 22/08/2016 07:43

Thank you tomorrow just can't come quick enough but I know once we get there and get out in that little room with the tissues I'll be a nervous wreck. Do they stay silent through out the whole scan?? Then take you back to the little room with the tissues to explain?

OP posts:
TheDisillusionedAnarchist · 22/08/2016 23:12

In my experience they do and then indeed take you to the 'quiet' room to explain the results with lots of diagrams.

Hope it goes well for you. Fetal hearts can change a lot. We had suspected hypo plastic left heart syndrome and coarctation of the aorta at the first echo at 21 weeks by the second only suspected COA and after birth an insignificant VSD only. Also the best place you can be is a cardiac unit they will be able to tell you so much more than with a standard scan.

Toocold · 23/08/2016 12:10

I'm thinking of you today, we weren't taken to another room but stayed in the cardiologists room whilst she explained it all, we were then led to a room whereby we met an expert midwife. I hope it all goes as well as possible for you today .

Toocold · 23/08/2016 12:12

The disillusionised does that mean your baby hasn't had an operation and has a hole in their heart that they can live with but go on with checkups? Or have I misunderstood?

GirlWithAPearlNecklace · 23/08/2016 19:24

Pm OP. X

TheDisillusionedAnarchist · 23/08/2016 20:08

She died in January but no she didn't need surgery though she did end up on diuretics and had PH. At our bereavement review meeting the cardiologist thought more could have been done and should have been done but sadly surgery is almost never offered to babies with our daughter's chromosomal condition and it is debatable with the PH as to whether it would have been the right decision. However she didn't have the two major heart anomalies they suspected in pregnancy which would have required immediate surgery and to which they had (very unusually) agreed to consider.

Toocold · 24/08/2016 09:50

I'm so sorry Disillusioned xx op I hope you are ok xx

symmslilbump · 29/08/2016 21:31

Im 28 weeks now but at 19 weeks our little girl was diagnosed as having a smaller than normal aortic valve and a hypo plastic aortic arch. She also has a moderate sized VSD. I've had another scan since then at 25 weeks and have another booked for 34 weeks. I am under Liverpool Womens and then my baby will go to Alder Hey. They were brilliant when we were initially given our diagnosis. The first few weeks after diagnosis are the hardest I've ever been through but stay positive and have a look on Facebook as there are loads of pages with hundreds of families going through the same as you xx

Nikki2ol6 · 30/08/2016 09:31

I'm back today for another talk to go over it all again. I got the first part of my amnio results back and they were normal but anytime now for the second batch and I'm so worried!! They said there are no soft markers at all except the heart but my chance is still 1in5 for a chromosome abnormality. These first couple of weeks have been awful. I can barely sleep, I wake up with words they have said buzzing around my head then lay there for hours and can't switch off

OP posts:
LadyAlanPartridge · 03/05/2017 15:58

Hello

How did everything go with your little one?

chellemcc · 04/09/2018 18:48

Hi everyone.My daughyer-inlaw had her 20 week scan today and was told the baby has only 3 heart valves and a build up of fluid around the heart so not good news at all.Has anyones baby ever survived this as wee are hoping for some sort of miracle?x

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