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Heart problems identified at 20 week scan?

(13 Posts)
Steena32 Sat 08-Dec-12 23:41:04


Sorry to post on here but really need help/advice - wondering if anyone has any experiences with having heart problems diagnosed at anomaly scan. I had my 20 week scan yesterday (Friday) (2nd child, DD is 2), Sonographer confirmed all fine, until we got to babies heart. She couldn't get a proper view as said the baby was lying in a funny position (and she was getting reflections from the spine) so she called a colleague in. Again second sonographer couldn't get a proper view so I was sent away for a coffee.

Returned 20 minutes later and baby had moved. Sonographer then said she needed to tell me upfront that she believed their was a problem with our baby's heart as she couldn't see all 4 chambers. She said she wanted to get her colleague in again to double check. The second sonographer came in and pretty much confirmed the horrendous news that the right side of our baby's heart was not 'as developed as it should be at this time'.

My DP and I are devastated - what does this mean? Is our baby going to survive? What happens next? And are we going to have the most unimaginable decisions to make in the next few weeks? Sonographer then told me that we had to be referred to a specialist Consultant in fetal medicine to discuss 'what the next step will be', and proceeded to give me the next available appointment - next Thursday!!

I left the scan devastated to say the least and the lack of information is driving me round the bend. The scan result sheet in my maternity notes say 'hypoplastic right heart' - which I of course proceeded to google only to have worst fears realised - that this could be one of the most fatal and rare heart conditions out there.

We have rang the hospital again today in desperate need of more information - I cant wait a week not knowing if this is the condition my baby has and if the baby is going to survive. The MAU rang me back having spoken to the consultant on call - and again I was told there was no point in me seeing anyone else as this Consultant is the best at what he does and I cant see him until Thursday.

I am a complete emotional wreck. Anyone have experiences of problems like this identified at anomoly scan? Any idea what further tests / advice will be offered? Any advice / help gratefully received

Thanks xx

blondiedollface Sat 08-Dec-12 23:44:52

I have no experience or advice for you, but couldn't stop without comment. I hope with all my heart the news is good on Thursday and that you and your DH find the strength to wait until then - maybe a mantra of no news is good news - to keep you going and keep busy with your beautiful DD until Thurs. Lots of hugs. Blondie Xx

loismustdieatyahoodotcom Sun 09-Dec-12 08:43:50

My ds was diagnosed with congential heart disease at my 20 week scan. Im sorry your going through this but I can say its probably best not to google and wait for the consultant. Just try and keep as calm as you can. I hope you get the answers you need.

comelywenchlywoo Sun 09-Dec-12 08:51:34

I feel for you, I too had extra scans at 20 weeks for suspected heart problems. It turned out that whilst DS has medical problems, in his case his heart isn't the issue. However, I remember all too well the torture of waiting and not being able to get straight answers out of medical professionals.

lois is right. Stay away from google, do what you can to stay as calm as possible and make sure you have support from your loved ones.
I really hope you have a good meeting with your consultant. It really is a sucky situation. I just cannot fathom why they make you wait! Surely they understand the stress it puts one through. However, that's another thread.
All the best OP.

aimingtobeaperfectionist Sun 09-Dec-12 08:58:10

Not the same but we had potential problems identified at 20 week scan and had to wait about 5 days to see a specialist. Please don't google, you will just upset yourself. Try to keep as busy as possible and talk to your DP as much as you need to.
Will be thinking of you and I really hope everything goes well.

Steena32 Sun 09-Dec-12 21:10:01

Thanks all. Dr Google wasn't my friend but in this instance, helped me prepare what was horrendous news. The consultant I needed to see was on call today and agreed to see me and do an Echo. Unfortunately he has confirmed HRHS, Tricuspid atresia, Transposition of the Great Arteries, DORV and VSD. Next stage is Amneocentesis tomorrow to see if linked to a Chromosomal Problem. Basically very complex condition and my baby has half a heart.

You hear about this kind of thing happening to other people, but you never in a million years would dream of this happening to you.

comelywenchlywoo Sun 09-Dec-12 22:59:18

So sorry to hear that the news wasn't more positive. I too never imagined I would have a child with complex health issues. I know nothing about the diagnosis you baby has received, but I just wanted to encourage you that now that DS is two we are doing so much better than we dreamed we ever would when he was first born. Although it may seem like your world is caving in, hang in there.

I hope I haven't spoken out of turn. As I said I have no understanding of the condition your baby has, but just wanted you to hear a story where despite the horrendous shock and grief of an out of the blue diagnosis things have gotten much much better with time.

You are in my thought at this horrible time. Anytime you want to talk feel free to pm me etc.

mmmmsleep Sun 09-Dec-12 23:12:05

Thinking of you steena. Sorry to hear you are having such a horrid time.

loismustdieatyahoodotcom Mon 10-Dec-12 13:02:04

sorry to hear the news wasn't better. I found the amnio painless and quick and hope you have a similar experience.

halfthesize Mon 10-Dec-12 13:10:49

I do not have experience in these matters and am so sorry the news so far has not been great, just wanted to wish you good luck tomorrow, my thoughts are with you all x

PrettyFlyForAWifi Mon 10-Dec-12 14:38:21

Hello Steena, I just wanted to say how sorry I am that you find yourself here. My daughter was diagnosed with a similar set of heart defects to your baby's back in May.
We didn't continue our pregnancy for several reasons (her heart was very complex indeed) but I am aware of several children living good quality lives with half a heart. The charity Little Heart Matters exists specifically for children with half a heart - do contact them, they are wonderful and have a great antenatal diagnosis pack for parents. The other charity that is just amazing is Antenatal Results and Choices, who provide non directive counselling for those who find themselves on the receiving end of an antenatal diagnosis. They have helped me so much.
When we got our daughter's diagnosis I remember feeling that life had changed forever and I wasn't wrong. It's the toughest of times but whatever your decision, it will be the right one for you and your family. You are in my thoughts. xxx

manitz Mon 10-Dec-12 18:23:16

hello steena i also had a baby who was diagnosed at a late anomoly scan with hrhs and various other problems such as transposition of great arteries a large pulmonary vein and particularly small aorta. I found little hearts matters extremely useful. You used to be able to read the life stories of the children living with hrhs or hlhs and I found it useful to make our decision.

We also chose not to continue our pregnancy, as pretty fly for a wifi says you will make the right choice for yourselves. Feel free to pm me if you would like to talk. I will try and check again this evening and again tomorrow evening.

I am so sorry you have found yourselves in this position. xx

Steena32 Mon 10-Dec-12 20:50:27

Thank you all for your kind words xxx

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