Heartbroken - bad news at 20 week scan

[1moretime]

So this is my second baby. A little miracle as was told I probably couldn't have anymore due to pcos & underactive thyroid.
Was on the pill & found out in Feb I was pregnant 😃 Everything going well apart from suffering with hypermesis again. 13 week scan everything going fine baby doing well.
so excited about our scan today after coming back off holiday last week & BAM I feel like my heart has been ripped out!

Everything looked fine to start with but when Sonographer came to baby's heart she went silent for a while then another lady came in they stood looking at the screen. My baby's heart hadn't developed properly. The left ventricle hasn't developed properly & right ventricle is enlarged etc.
Iv been referred to RVI Newcastle oN Thursday for a more in depth scan & to meet with heart surgeons to see what we are facing.
We are totally devastated & it's hard as my DS age 7 came in from school asking to see the pics. I had to hold back the tears while he stared at the pic saying Aww there's it's head & face & little belly.

I'm really hoping & praying they gave got it all wrong or I'm gonna wake up from this horrid nightmare!!

Anyone please shine a little bit of light on us?

Xx

Must be so awful to get bad news on what should be one of the most enjoyable days of pregnancy - the rvi really is great, hoping to read better news on Thursday X hugs X

Hi OP I've got no good advice I'm afraid, just wanted to let you know that I'm thinking about you and praying for a good outcome for your baby,
Lots of hugs,

Are they suspecting Hypoplastic Left Heart Syndrome?

Good luck on Thurs x

I can't thank you all enough for your kind reassuring words. It's 4.24am and iv been lying awake for over 2 hours. I woke up crying. I really did hope this was all a bad dream.
I'm so scared. Just feel like my own heart has been ripped out. I just need to know exactly what is wrong as medical words scare me more. When I have Googled what it says on my notes it is coming up with hypoplastic left heart syndrome...bit not 100 percent as im just going off what the notes say.
The Sonographer basically said there appears to be a problem with baby's heart. The left hand side doesn't seem to have developed properly & right side looked enlarged. Everything was going so well. Baby is moving about & iv just bagan feeling he/she past 2 weeks. I'm worried sick & can't stop crying which I know is no good for baby. I dont want baby to feel what I feel.
I just hope there Is someone out there who had same news & everything worked out ok.
I really don't think I can face seeing my little baby go through all this 😢

I so feel for you 1more time.

My situation was very different to yours as we had a fatal diagnosis (totally different to yours) at 15 weeks with one of our twins. I'm now 36 wks pregnant and the poorly twin passed away 4 weeks ago. I've just woken up from a horrible dream about my 9 year old which I know has to do with all of this...

The waiting to see a specialist is horrendous and I desperately trawled the internet for information and diagnosed my baby with all sorts of things which he never had.

It's made more awful by the fact that you should be able to relax and enjoy your pregnancy and a part of you also grieves for this. I also understand the concern about being upset/stressed during your pregnancy, with my first baby my husband was undergoing cancer treatment and given a 50/50 chance of survival, I spent most of the pregnancy sobbing and having panic attacks - she is now the most amazing, chilled out, bright little girl you could ever meet so I'm not worried about the stress levels this pregnancy.

It's still very early days for you. Often fetal medical units will find a misdiagnosis from local hospitals - we were diagnosed 3 different times by three different people. We were also told our healthy twin might have microcephaly until the next scan showed that she was perfectly on the 50% centile.

Once you get to see the specialists you will be in the very best hands - often in between appointments I felt out of control and spiralling. As soon as I saw them, they were able to offer me a plan which helps you feel more in control. My best nights sleep are always after seeing a consultant.

Try to keep hope where you can. Rest when you can especially if you're not sleeping at night. Get signed off from work if it helps. Take each day as it comes - every day your baby is growing stronger inside you. Take lists of questions for the specialists and write down the answers. Keep talking to your partner, friends and family to make it feel less 'strange'. Know that you are in good company, others are in the same position as you, others have made it through this hard time, you are strong enough to do all of this.

Sending you love and strength and will be thinking of you on Thursday.

Hi OP, just wanted to say that I'm thinking of you. At our 20 week scan our daughter was diagnosed with a brain abnormality. We ended up being referred to a fetal medicine unit - having several scans, including MRIs and an amnio.

I can completely relate to feeling sleepless, upset, helpless and so on. Be kind to yourself. Try to take each day as it comes and perhaps tell a trusted friend in real life so you have some support (even if it's taking your 7yr old off your hands for a few hours)

Also, if you're currently working and need time off take it, it's a lot to be processing right now

Hi 1more waves from hg thread. Am so sorry to hear about your scan and I'm sure Thursday feels like an incredibly long way away. Take each day/hour/minute as it comes. I'm glad dh was there to support you. Lots of hugs and will be following and thinking of you

Hi OP, try not to google! there are lots of things that can cause a smaller left heart with an over developed right heart - hypoplastic left heart is one of them, but there are other causes and I saw on the note that they couldn't see the outflow tracts so they don't know what the major vessels (aorta, pulmonary trunk) are doing.

I imagine you will need further in utero scans, probably a formal echocardiogram (ultrasound of the fetal heart) and then lots of discussions with the surgical team over your delivery choices (you may have an elective LSCS recommended) and what will happen after that in terms of surgery for your baby. We can fix a lot of congenital cardiac defects these days! I am now seeing women coming through with very similar stories - except they were the baby, they had their heart surgery as babies and have now survived into adulthood and having babies of their own.

This is a huge shock for you and you will worry, cry at odd times and most probably be thinking about it constantly trying to find answers. Not knowing is the worst feeling as you have no control over the situation at all; once you have more knowledge of what you're dealing with, there is then the option to generate management plans so you know what to expect. Use all the outreach, patient centred groups you can for info and support, try and stay away from google and above all be gentle with yourselves.

Good luck for Thursday

So sorry OP.

From what they have said it could be one of many defects. Possibly the worst thing it could be and the thing I think they may be looking for is hypoplastic left heart.

Do not google - there is a link below to a BHF leaflet which you can download and gives clear information written for parents, repeat step away from google - the link is all you need to know.

Let me stress this condition is the worst I can think of, from what has been written on the letter and it may be this. Obviously it could be 100 other things that are not as severe.

www.bhf.org.uk/publications/children-and-young-people/understanding-your-childs-heart---hypoplastic-left-heart

Good luck and try not to worry - I know easy to say - your baby i the same baby as yesterday, you just know something more about him/her.

Thank you all again so much. It really does help talking to others.
I have taken time off work until we know exactly what we are dealing with.

Dolly80 so sorry to hear about your DD. How is she now? Did she need surgery as a baby?
hicdraconis is that a good thing that they couldn't see the outflow tracts? I'm so worried right now just feel like I want it all to go away. I cant concentrate.
I did Google as you do & hypoplastic left heart syndrome keeps coming up but it's making me worse as it states it can not cured although there are procedures they can do. It looks like it will be done iN 3 stages if this is what is the problem. The survival rate is 80 percent but most babies die between the first & second stage. It also says that most children will only make it to their teens. I really don't think I can prepare mysef to see my baby go through all this the to lose them.
Someone please take all this away from me.

sashh thank you for your post I will take a look at the link.

Sorry if I'm not replying to everyone. I'm on my phone scrolling up and down.

OP the first thing our consultant told us was to not google. I wish I had listened to him. It made waiting so much harder because my mind was racing. It's incredibly difficult to not do it, though. Things will be clearer for you soon.

Thinking of you and your baby OP hope it all works out. You're in good hands

This looks like some form of hypoplastic left heart. " don't google" is such a daft thing to say these days. Much better to have a resource that is reliable .

Sassh gave a good link and here is a more parental support based one

www.lhm.org.uk/

Your baby is still your baby. A gorgeous little individual. an acquaintance had a baby with this who had surgery at a few months and las doing well at over 12 months a year or so ago.

Hi again OP. I had 2 fetal MRI scans, the amnio, torch screening and multiple blood tests and further ultra sounds during pregnancy. Fortunately, no surgery necessary when she was born but she did have an MRI scan at 3 weeks old.

She's been diagnosed with a condition that might affect her development but also might not. We won't know until/unless she doesn't meet her milestones. Taking each day as it comes is our only choice as she may or may not have difficulties in the future.

My advice would be to discuss everything fully with the consultants so you can make informed choices. It's difficult dealing with a diagnosis during pregnancy but being as informed as you can will help.

Be kind to yourself, it will be an emotional rollercoaster but you'll be surprised how strong you can be when you need to

Hi everyone. It was confirmed on Thursday that our little prince has Hypoplastic Left Heart Syndrome 😢
We were faced with some difficult options, but me and my amazing DH have decided to stay strong & give our little man the best chance possible. It's gonna be so tough & our whole life will be different bit we are ready to fight.
I can't really describe how I feel. Part of me wanted it all to go away while the other half looked at that screen at our little boy looking up at us and wriggling as if he was pleading with us to stay strong.
I feel that the excitement of my pregnancy has now been replaced with fear & dread.
I'm hoping I can somehow manage to enjoy the rest of my pregnancy & look ahead & find the strength to get through this!!
Thanks again for all your lovely support & messages xx

I'm so sorry that you are going through this. I wish you all of the luck in the world for the fight ahead. I hope it can be rectified in the future and your baby has a long and happy life.

Thabk you whatshername that really does mean alot hun. We are back again this Thursday for another scan xx

My niece was born with this condition, they really can do so much to treat it.
There is a fantastic charity called Little Hearts Matter that have given so much support and practical help to my sister.
Good luck xx

chocolatefudgecurls thank you so much for thiam hearing this gIves me hope.
Did you sister know before your neice was born? Xx

Yes she found out at 20 weeks like you.
DN has had both the Norwood and Glenn procedures and is due her Fontan in the next few months, she really is such a happy child and doesn't let it hold her back!
Please do contact little hearts matter, they have people that have been in your position that they can put you in contact with, my sister met a few other parents through the charity that have children the same age and the support they are able to give each other is priceless xx

Thank you chocolatefudgecurls that is really reassuring hun. I will call them hun. They gave me a booklet last week for little heart mattees but to be honest haven't looked at it xx

It will feel so overwhelming for a while I'm sure, just make sure you look after yourself x

It sure is! Thank you hun. Xx