Major heart abnormalities on 20 week scan

[Nikki2ol6]

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?

[Trifleorbust]

I'm so sorry, I don't have experience of this but you have my sympathy

I think you should get back in touch with your midwife and/or the specialist and tell them you want to be more informed about the implications of this because you are, naturally, feeling very frightened and anxious. It sounds like you have been given a certain amount of information but they have left big gaps and that can't be good for you at this stage?

[Nikki2ol6]

She said I could call her any time to ask any question we have but she answers all she could for us and told us all she could from what she seen. We see the heart specalists in 2 days for a more detailed scan and to be told there and then exactly what this is. But yes exactly as you say we have been told so much and left with so many gaps and the stress is unreal!! We haven't slept properly at all Iv hardly eaten. We are in shock and feel devistated

[Trifleorbust]

Again, I'm so sorry to hear this. Perhaps begin by writing down a list of questions to put to the specialist. This may help you to manage your anxiety in the short term.

[user1467983757]

Biggest hugs. I hope the specialist can tell you a course of treatment xx

[Nikki2ol6]

Thank you. I did ask the midwife who scanned me is he going to be ok? I expected a yes maybe a few ops but yes. But instead she said I don't know I'm sorry I can't answer this for you. Hopefully this specalist is going to have a real good look and tell us it's all very fixable xx

[Trifleorbust]

She wouldn't have been allowed to answer that question, OP, so don't take that as a negative answer. She would have to refer answering that to the specialist, probably for legal reasons.

[EreniTheFrog]

I'm so sorry

I hope the specialist can give you the info and reassurance you need.

[notapizzaeater]

I agree write down any questions you have, no matter how trivial - once there you will forget things ((hugs))

[Nikki2ol6]

Yea I have a list I just fear there will be a million more once we get the initial diagnoses

[Toocold]

Hello, I'm sorry you are going through this, but you aren't alone, I'm 25 weeks with a baby that has VSD and suspected coarctation of the arota , it's been a difficult time and we found out at 22 weeks ( I am already having extra scans due to a complication my daughter had when born do the baby moved too much at 20 weeks for them to see everything clearly) we are going back at the beginning of Sept for further info and are under a foetal cardiologist, she explained everything in great detail and the baby will be having one, possibly two operations when tiny. What has helped me is going on the British Heart Foundation website and looking at what happens when babies have specific heart conditions, they list them and also making practical plans. Another thing that helps is my dd had a 1 in 3 chance of having downs, she doesn't have it and is now a very bright 11 year old, I also have an 8 year old, he is also fine. Take each day as it comes and be kind to yourself, the next couple of days will feel like a lifetime but once you know you can start to prepare, even if it's mentally, preparing practically for me is helping. Take care x

[Nikki2ol6]

Thank you for replying. How often are your extra scans? I'm due extra scans at 28,32,and 36 weeks because I have a weak heart and they needed to check my baby is growing ok because of this and wanted him out at 36-37 weeks because they said the longer and I'm pregnant the bigger he gets and the more damage will be done to my already weak heart. But I have 4 children and none of them have heart issues and my heart issues only became apparent this year. And my baby's heart issues have nothing to do with mine. So I'm worried I will need a lot more scans for myself and the baby X

[GirlWithAPearlNecklace]

Hey.
I've been where you are. I can guess as to how shocked, confused and frightened you are right now.
My daughter, who is 2.5 was born with a complete avsd, (and DS.)
I found out at 12 weeks and had very regular scans at big London hospitals throughout my pregnancy. It's terrifying.
one thing I did find though, was that you do get time to get your head round it, prepare those around you to be supportive, and the worry doesn't leave, but you do get used to the idea. It's hard though, because you don't have that physical baby to focus on, jut a bump and a diagnosis.
Dd had open heart surgery at GOSH when she was 12 weeks. It was done and dusted and we were on the train home in six days!
The heart teams at these specialist hospitals are awesome. Blasé almost, but fantastic. The care is second to none.
My DD was a new child straight away and she hasn't looked back.
You can do this, just keep the faith and stay strong for your little person. X
if I can help, in any way, please drop me a PM.

[GirlWithAPearlNecklace]

One piece of advice I will give, and repeat over and over, is don't Google. You'll start off ok, with science based articles, get bogged down in survival rates, get side tracked by links and page suggestions, until you're in some kind of barely related hell!
Instead, look for peer support. Search for support groups, find pages and groups on facebook to join and speak to other parents that you find. You'll find there's a whole wealth of experience and undetstanding out ther, and a hell of a lot more love and positivity than you'll ever find on a wiki page or medical site. And that's what you need right now way more than an in depth knowledge of the technical details involved. Xx

[Nikki2ol6]

I know I have been searching on Facebook. But we still haven't announced the pregnancy and evryone would see I have liked or joined the page. So I have been googling forums for babies with heart problems. Did you get my pm? X

[GirlWithAPearlNecklace]

I did indeed and have replied. Xx

[LakeOfDreams]

I'm so sorry. It must be so confusing but the specialist you see should be able to give you much more specific and accurate information. I think the issue is they have to tell you there is a problem when they find them but they are experts in scanning women not heart problems. I suppose it would be the same if someone had a rare cancer your GP would have some simple basic facts but you'd need to see a specialist for the details.

Write down all your questions and ask the specialist you see for as much written information as possible. Good luck I hope everything works out and is as straight forward as possible

[Nikki2ol6]

Thank you lakeofdreams yes I suppose you are right. She did say she has herself worked I. Fetal medicine and knows a fair amount about hearts but she's not the specalist and they will be able to give us so much more info

[sashh]

She is right that she cannot tell you.

I worked in cardiology for years and the one thing I can tell you is that it is very difficult to predict things.

I have seen an echo (ultrasound of the heart) of a 30+ man who had a VSD, an ASD and one valve completely missing - but it was only picked up at a routine check when the Dr couldn't hear the right heart sounds, he had lived his entire life with no symptoms.

This was a few years ago so he was too old for his mother to have a an u/s scan.

The thing is that now you know there is a problem and you can make a plan with the cardiologist of the best course of treatment.

This might mean giving birth in different hospital and operations for your baby, but it can all be planned before your baby is born, not in a mad rush when he/she is here.

Agree to writing down questions and not googling.

[Nikki2ol6]

The hospital I'm at has neonatal unit and fetal medicine and the delivery suite and birthing not centre so I do think I will be giving birth there still but transferred to the hospital a few miles away for any ops. It's going to be over Christmas time too and I'm going to be away from my 4 children and I'm terrified of evrything

[loismustdieatyahoodotcom]

Too cold my DC had the same problems, and if it helps he's now a beautiful healthy 4yo. He had two surgeries and I'll be honest it wasn't easy but doable.

Nikki I'm so sorry your going through this, it's not what anybody wants but it maybe worth contacting heartlink which is a charity for children with heart problems. I hope everything goes well and you get the support you need

[Nikki2ol6]

Thank you it's great to here these success stories that children are growing up happy and healthy

[Toocold]

Thanks Lois, that has helped, I have been through surgery ( different sort) with my dd when she was two days old, so think I know what to roughly expect, which helps. Nikki, I am having extra scans at 27, 29, 32 weeks and possibly more but that is partly due to what is wrong with the baby, what happened with my dd ( wasn't picked up until 37 weeks) and the placenta is in the wrong place, with my dd towards the end I had daily scans but in one way it was reassuring as I could see she was ( and is fine) I think the not knowing is so hard, you are one day closer which is good and as the others have said try not to google. With regards to Christmas, I'm trying to get organised in advance , practical things help me, makes me feel I am in control, could that help? How old are your other children?

[Toocold]

Also you have had other children and will be able to be assertive as to how you are treated and where, I am currently between two hospitals but feel confident this time that I will push for what I think is best birth wise and aftercare, I felt very differently with my first and had very little confidence, this time I'm determined it won't be like that, I think you are stronger than you probably currently feel and will get through this x

[Nikki2ol6]

My oldest is 7 and youngest 18 months. I'm not due until new year but I have never quite reached my due date. Thank you for all your kind words i am sure we will come out of this the other side but stronger people but right now after just finding out when we believed evrything was going perfect feels like our world is falling apart but I'm sure we will get used to the idea X

[Toocold]

That is exactly how I felt a few weeks ago, time really does help and knowledge, I hope all goes well for you when you go back and you'll at least know where you stand, you'll be in my thoughts.