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

@No1worrier I somehow posted on here by accident without even having seen or read the thread, for which I'm really sorry. I now have read it. I'm so sorry this is happening to you. How utterly heartbreaking. Sending all my love and strength to you x

We'll all be thinking of you tomorrow OP, sending . I'm so sorry you have to go through this.

OP you are so brave
The way you described you and DP going for a drive and getting chips and takeaway coffee made me sob I hope that you continue to take comfort in things like that and be very kind to yourselves. You are in my thoughts lovely lady xx

Oh op I'm so sorry you're going through this, it's utterly shit.

It'll be exactly two years next week that I gave birth my my little girl at 31 weeks. Our situation was slightly different to yours in that we didn't find out the severity of her problems until about 28 weeks as at first she was just showing as "measuring small" so I was just having growth scans. It wasn't until they did some more investigating and sent me to the fetal medical hospital that we realised what was causing her growth issues, it was discovered that I'd caught CMV very early on in my pregnancy and so after amino and an MRI scan it showed the infection had severely affected her brain and she showed lots of markers on her brain in the scan and her head was off the chart small meaning she'd be born brain damaged and have a host of issues so we made the heartbreaking decision to end the pregnancy. Honestly it was the hardest decision I've ever had to make but after all of the results and speaking to the consultants we knew we couldn't bring such a disabled child into the world and we also had our two year old to consider as well.

Leaving the hospital it was just surreal, we actually went to the cinema as a way of distraction and then took our son to the park the following day then I went in and the hospital staff were amazing, I had my own room and was offered any pain relief I wanted and then it was just a waiting game. After I gave birth I did skin to skin like I would have done and then we had the option of dressing her or having the midwife do it, we asked the midwife to and she took her away and brought her back dressed in a little white dress (people make them from wedding dresses) and in a basket with a blanket and teddy - it's all donated from SANDS and you get a bereavement packet. You'll be allowed to spend as much time with her as you like and they'll take pictures and hand a footprints for your memory box. The hardest part will be leaving the hospital with only your memory box but they should give you the option to come back to see the baby whenever you like before the funeral. We chose the co-op to do the cremation and they were fantastic, I visited my baby at the funeral home a few days later with really helped as I was more aware of everything and I took more pictures and just held and spoke to her and did my crying in private. I took her a new blanket too as they will ask if you want to wrap her in anything special.

It's going to be the hardest time of your life but you will get through it. It's been two years for me but I did go on to have my beautiful and healthy DS2 who'll be one next month and he's just pure joy. It's true you take all the pain now so your baby never has to. I think of my daughter every single day and it'll never go away but it will get easier with time. Sending lots of love xx

It's 5 years today since I lost my little boy at 21 weeks. Looking back, I could have done things differently I would have definitely taken some clothes in for him. It was something that never crossed my mind to do and, although he was wrapped up in a blanket with his little hat on, I wish I could have dressed him.
Take lots of pictures. The midwives did their best for me but honestly, I avoid looking at them because they're rubbish. He was born at night and it was so dark. I fortunately took some more of him when it was lighter but I don't have many decent pictures.
And hold you baby as much as you can when she's born. I regret not doing so (I did hold him but not enough) because when I went to try and pick him up the next day, he was so cold and felt so fragile that I daren't do it.
I was in hospital for two days but I bled loads and they kept me in.

All the best for tomorrow xx

Sending love to you for tomorrow. You're so strong. Believe in your decision darling, your and your partner are incredible parents to a sadly poor little girl and you've done the right thing because it was thought through despite your pain. I'm really really sorry. Good luck xxx

@No1worrier i am sending so much love and hope with you for tomorrow. Hope that you will know how brave and kind and loving you are being to your little girl. Hope that you give birth without too much pain, and can spend whatever time in whatever way you wish with your daughter. Hope that you can just give her all your love and let her be free from the pain awaiting her.

The stories on here are heart breaking. I'm in awe of the strength all of you have. You are truly WOMEN WARRIORS.

I'm so sorry op. Sending you love for tomorrow.

Thank you again everyone for your messages and also those who have went through similar heartbreaking experiences for your advice. Everything you have told me has been helpful during this nightmare.

I have tried to "enjoy" my last day of being pregnant, looking at my bump in the mirror and packing my hospital bag.

It's a strange feeling I've had all day, I don't want to face tomorrow, I feel it's came round so fast but also want this waiting over and done with so I can meet my daughter and then properly grieve for her x

Sending you strength for tomorrow xxx

Sending lots of love and strength. I will be thinking of you tomorrow xx

Sending you all the love and peace, Op, thinking of you and your partner. Take care ❣️

I’m so, so sorry you’re going through this.

I wish you all the love and strength in the world xx

thinking of you.

Thinking of you & sending you so much love. I’m so sorry you’re having to go through this xxx

So sorry you are going through this. I will be thinking of you tomorrow. Have been through similar at 18/19w after we found out our son had multiple severe abnormalities (including heart), caused by Downs Syndrome.

For the days ahead I can recommend the ARC-UK phoneline and forum. Most of all, be kind to yourself.

So very sad thinking of you x

I'm so sorry for your incredibly sad loss OP.

I lost my son half way through my pregnancy (due to medical negligence missing a dilating cervix!). The grief is unbearable but time is a great healer.

To give you hope, I went on to have 2 healthy full-term DDs.

All the best OP x

Sending love and strength for you, your husband and your daughter x

Oh OP, I just remembered, my milk came in a couple of days after the birth and my boobs were painful and rock hard (obviously, because I had no baby to feed!). And the whole thing was just a reminder that my body had given birth and was ready to feed my baby.

The midwives gave me a pill to take to stop any more milk coming but said it is usually given before the Milk comes in to stop it completely.

Sorry I'm not sure if PP had mentioned it. And I can't remember what the pill is called either 🙈

I'm so sorry you're going through all of this. Life can be so cruel at times!!

I hope tomorrow goes smoothly for you and you get some precious time with her to meet her, talk to her, get to know her and say goodbye.

You're doing what every good parent does and putting her needs above your own but take time for you too. Thinking about you! Xx

Sending you lots of hugs, strength and love for the days and weeks ahead.