Bad news at 20 week scan, please help.

[No1worrier]

I hope someone can tell me their experiences from something similar. I have just been told at my 20 week scan my little girl has something seriously wrong with her heart. I have been referred to the fetal medication unit to see a specialist cardiologist tomorrow. She is moving so much, heartbeat has been strong since was 6 and a half weeks pregnant, everything else like her brain, kidneys etc look fine but something is so badly wrong with her heart. I'm so confused 😥. The consultant at the hospital didn't say what he thought it looked like but he said it was serious and I will probably be given options, one being it is fixable, another is ending the pregnancy which we refuse to do! I am 21 weeks pregnant now so more than half way and I can't even think about ending it. All I know is she doesn't have the normal 4 chambers etc like a heart should have. Sorry I don't have much more information than this, we don't get to take notes away home with us at our hospital. Any input would be appreciated 💗

Sorry forgot to mention my down syndrome screening bloods came back as 1 in 99,000

I'm so sorry, life can be so cruel, I can't imagine what you are going through. Have the hospital got a bereavement midwife? Some of the bigger hospitals have them.

Don’t be hard on yourself, it’s totally understandable to feel so afraid. I know I had some terrible dark nights before the labour with my poor little boy. But some things did help. I told myself time and again that I was going to go through all the pain so he would never have to, that did bring me comfort. And although I’m not at all religious I do practice yoga, I focused on just getting through the next five minutes (I mean all the time, not just during the birth, sometimes I needed to deep breathe my way through the day). The serenity prayer is good to focus on too.
You will be strong enough - you have depths you don’t even know about because you’ve never needed them before. But they are there. Trust yourself and your body, this is a hard hard thing but you can do it.
And I promise you will get through this. And it will get better.

When I lost my boy I couldn’t see how life could ever be good again. 12 years later DP and I are still together, and now have two beautiful children. I’ll never forget my first, I think about him every day, but life does go on OP. And you’ll feel happy again.

you have depths you don’t even know about because you’ve never needed them before. But they are there.

This is so true. Before our daughter died I thought I was quite strong, but after I felt like superwoman. Labour, planning her funeral, staying upright on days when I wanted to crumble. I did it all and three years on I am still standing. You will be too 💕

Thank you again everyone, your words and messages have been so helpful at this horrendous time in our lives. We went a drive yesterday away from where we live (I know it's against the rules) but we needed away from the place we stay as we know so many people and want to avoid everyone. We got some chips from a takeaway cafe and went a walk in some fresh air. Felt good but then driving home reality hit once again.

Anyone that has experienced similar, do you have any advice/tips on what I should take with me to hospital? I didn't think I would be packing a hospital bag until June so not really prepared at all x

I’m so so sorry to hear the update we’re all here for you

Hi OP I am happy to help. Been thinking about you today.

If you want you can send me a private message and I’ll give you more details as far as I can - things might have changed since it happened to us.

You will be giving birth so you will need comfy bed clothes and I’d recommend a long nightshirt with sleeves. (Your top half might get cold). Comfy socks for the same reason.
Big pants (knickers) that you will never want to see again. Also comfy clothes like baggy trousers and top that you will also never want to see again, and sunglasses if you want to hide your eyes. Sanitary towels for afterwards, you will need the big giant kind you haven’t seen since sex Ed at school. A little wash bag, include toothpaste etc (you might vomit, I did) take tissues too, and lip balm.
Phones, iPads, chargers, headphones and maybe extra batteries so you can watch movies or listen to audio to put yourself in another world. Labour may take time so movies are good.
The hospital will probably have a special private room for you to be in but be prepared, it could be very close to the maternity wards. You might hear the other women. It’s ok to be furious and grief-stricken about this, it’s also ok not to notice.

Ask a midwife (before) about a tens machine for the contractions - I didn’t, but when I used them for my next two births I did wonder if they’d have helped for the first.

Clothes for the baby. She will be so tiny but you can get super prem clothes which can fit, there are also charities which make hats etc for these babies. You might want this, or not - we’re all different. Just united in this awful club that no one ever wants to be a member of. There will be time to spend with her, and take photos, and other mementos. I’d strongly advise you to do this, it will help you in the time afterwards. And it will be a record of your beautiful girl.

Organising clothes, blanket etc is something grandparents or other relatives might be able to do if you are up to asking. In my experience people feel powerless in the face of your pain and are really keen to help if you give them a task.

Will they let your DP be with you during COVID? I’d fight for this if you can, it will be better for you both to go through it together.

I’m so so sorry but be prepared for your milk coming in afterwards, you may need some breast pads and when this happens it will be hard to face. But you will go through it, and you will recover with time, and you will be ok.

And you will never again in your life have to face something this hard again.

@JoyousAsOtters

Thank you for your very detailed reply, that has helped alot. I have ordered some items from your list to come next day delivery.

The hospital called today, I go in tomorrow for my first tablet and to speak to the consultant, I will then be back in on Thursday for the birth 💔.

Will I feel any different in those 48 hours after the first tablet?

Thankfully my partner is allowed in at all times. I don't think I would be going through with it if he wasn't xx

Hi OP.

I’ve been thinking of you. I’m so glad to hear your partner can go with you that’s great.
I hope you didn’t think my post was too matter-of-fact - I was just trying to think about the things I could remember that would be useful.
As to the tablet - I don’t think I felt any different at all after that. They did tell me that for some women it is enough, and that labour can begin spontaneously after that first drug, but that didn’t happen to me.
I went in to hospital and they gave me something else to start labour, I think it was pretty much the same as being induced but I’m not 100% sure on that. Then a couple of hours later I started gradually getting waves of contractions - I hadn’t given birth before that and I wasn’t really sure what they’d be like, but they were like period pains at first. Ask if you can have gas and air, I didn’t and again it’s something I thought of once I’d had my subsequent children. I think it would help but there may be a reason they didn’t offer it to me that first time.

Please don’t worry if you’re scared. Try to just focus on getting through the next 5 minutes, then the next and so on. Your body will get you through. You may be sick, it’s ok, the midwives will help you, and clean you up. I had two midwives with me on and off the whole time, and they were wonderful.
I had a little private loo and basin off the room that I could use - I found I was so nervous I needed the loo like a million times. One thing no one tells you unless you’ve been to NCT etc (which you won’t have yet of course) - when the baby is ready to be born it feels really similar to needing a poo, so don’t worry if you get that feeling, it is normal.

The whole labour from start to finish was about 10 hours, but the tough part was just the last 2.
After our baby was born was strangely wonderful as well as grief-stricken and heart-rending. I’m happy to put that part in a private message if you want, but not in a public forum. It’s family stuff, nothing more horrific than I’ve already told you, just personal. You will get to spend time with your daughter - you will be looked after, the drs and midwives will be so kind.

Think about how you’re going to get home from the hospital afterwards - it is probably a good idea to have someone you can collapse in front of pick you up, even if you think your DP wants to drive. He may well be exhausted if he has to stay up with you all night, and will have been through the grief wringer.

Oh OP I’m so so sorry you’re going through this. It’s the worst thing I’ve ever had to endure. But you can do this, and you will be ok, in time.

@JoyousAsOtters

No no I appreciate it so much, it's given me a great insight of what's to come and I'm thankful for that.

Does everyone stay the night or do some people get home that day? Does it depend on the individual?

Yes please private message me if you don't mind talking about it that is. I know this must be hard for you x

We stayed the night because it took a while for labour to begin, and then by the time he was born it was half way to morning.

I’m happy to post because I know this may help others in the future but I’ll pm you too.

I felt sick and achey after the first set of pills but I don’t know if that was psychosomatic. I had to be induced to begin labour too; they use the exact same drugs as they do for a live birth but 4x the dose (at my hospital anyway - appreciate it may be different elsewhere). I was offered G&A but it made me feel sick so I accepted a shot of morphine instead, and then, later, an epidural. The water bath was really helpful for me, and because your baby will have already passed, they don’t need to worry about the temperature and they can make it as warm as you like which was really helpful for the pain.

I stayed the night because my baby was born at 2am but I don’t think I would have if she’d have arrived in the morning. They won’t hurry you out. You can ask if they have a “cuddle cot” if you like - it will keep baby cool so you can spend more time with her.

You can also ask to bathe baby if you want to (we didn’t - we were happy to just cuddle her). You can do ANYTHING you want to. Don’t feel restricted in asking for anything at all. The midwives gave us some great hand prints from our girl; they weren’t able to get footprints as her feet were too tiny and delicate.

I’ll be thinking of you tomorrow and all of this week 💕

So sorry you had bad news at the scan OP . I had some bad news at my 20wk scan with DS1 regarding his kidneys, thought he may need surgery after birth, booked me into for another scan at 32 wks and the problem has rectified itself. Keeping everything crossed for you OP.

I’m so sorry for what you are going through. X

I was induced early evening, so we were in overnight. Our son was born at noon, and we could have stayed in the following night, but went home in the evening because we didn't want to be away from our older DC (my mother was staying with him).

Our hospital had a selection of hand made baby clothes for us to choose from - our wee boy had a skeletal deformity and standard premmie clothes wouldn't have fitted. We chose a beautiful white gown with green smocking across the chest and short puff sleeves, a hand knitted white bonnet and and a hand knitted white shawl.

I wish with all my heart that the kind people who made those lovely things could know how much we appreciated them.

And this is a thing you will find - kindness in unexpected places.

I am so sorry op. This is so sad and you must feel lost. I'm so glad people that have been through this are offering advice. I will be thinking of you this week.

I'm so sorry you're going through this OP, thinking of you x

I just wanted to say how sorry I am for you OP and to all the other women that have been through this and are offering support. My heart breaks for you but you are all incredible, brave, strong women. I hope life goes onto give you all the wonderful things you deserve.

Good luck OP, i hope things go as smoothly as possible and that life gets easier and kinder for you after this is all over. Will be thinking of you!

I'm so so sorry this is happening to you..
Stay strong

I am so sorry for your heart break OP, I can do nothing but send my love to you.
My eldest daughter was born with a very serious heart condition that was not picked up on her scans, only just after the birth.
She had a complicated battle but did so well, she died at 10.5 months old.
I know it's not really the same situation but I couldn't read and run because my heart is feeling so much for you right now 💖💖
Do not be afraid to ask for what you want/need, both at the hospital and with friends and family.
When my daughter died we were able to have access to a cold room so we could stay with her, some hospitals have cold cots so she may be able to stay in the room with you, if that is something you want.
Just remember there is absolutely no right or wrong way of doing this, do what feels RIGHT for you, and do not stop to think about the considerations of other people. You and only you (and of course your partner) come first.
I'm so sorry this is happening 💐 but you will find strength you never knew about (because you never needed it) and you WILL get through it xxx

Thank you for all your replies and advice. It has been really helpful. I have taken the first tablet so now just to keep ourselves occupied until Thursday. I can't help but feel some guilt and regret after taking it, I will need to live with this for the rest of my life although we were told again today by a consultant she would be very lucky to see full term and come Friday she will start to feel pain so we know this is the right decision.

@bubblegeek22

Thank you sharing your story, I'm so sorry you had to go through this. Unfortunately with our situation they had missed more than just her heart problem in my previous scans 💔 she is a very unwell little baby x

@No1worrier

I hope all goes as smoothly and peacefully as possible, and that you will have some cherished memories of cuddling your little daughter

@bubblegeek22 that is utterly heartbreaking, I feel for you and everyone else who’s suffered such a loss

Sending you strength OP. There’s a whole army of us on here and we are all holding your hands.

Sorry didn't mean to post here.