20 week scan, heart concerns - so scared

[Serendipity2023]

My husband and I attended our 20-week scan yesterday and were told some scary and unexpected information. Our baby's heart wasn't showing as expected on the scan, and we are being referred to a more specialist hospital (LGI, Leeds), to be seen by the cardiology dept.

The sonographer was unable to get a clear image of our baby's heart (I was scanned twice, after the 1st scan I was told to go for a walk and drink some fruit juice).

We were then placed in a room and after an agonising 30-minute wait were seen by a more senior staff member. I'm a very pragmatic and 'don't sugar coat it' type of person, so she told us the likely outcomes (once the issue is confirmed) would be:

1. the heart will correct itself pre-birth and baby will be fine
2. once born or during early years, baby will need heart surgery/ies
3. the issue is too critical and then we'd need to make the painful decision to terminate or carry to term, knowing the baby won't live for long

The hospital notes showed that all other vitals are fine, but the sonographer wrote the following in the comments:
I am unable to identify any normal heart structures on todays scan, the right side of the heart appears enlarged. Further investigation is required.

Although the remaining structures within our guidelines have been identified, this does not guarantee normality.

I guess I'm hoping someone may have been through something similar or can offer any advice... I've not slept and my overactive brain can't stop searching google for (impossible) answers

@Serendipity2023 I'm so sorry to read this and sorry that no one has replied to you yet. Unfortunately we were option 3 and I had to have a TFMR at the end of November and our beautiful daughter was stillborn on the 2nd December. Ours was a brain abnormality.

Please ask anything you need to. I hope you are taking some time off of work? X

Another one who had different problems but ended up terminating. Do all the tests they can think of and if in doubt ask if you can speak to a specialised childrens cardiologist. It's scary, it's a lot of information and it can be very tragic. You will just have to live this life for the next couple of weeks. This is however what the 20 week scan is for: better to know now, have options now, than ending up with a child with terrible prospects. At least if your child is viable you already have the care in place for them to be monitored and/ or operated on.

You can always give up hope later, don't give up hope now. I hope that your child will be okay enough.

Hi I'm sorry to hear this, it's so stressful. I'm 26 weeks and we've also had heart abnormalities diagnosed in the womb and are now with GOSH who have been amazing - we know the baby will need surgery a few days after birth and there's a plan in place for that.

What I would say is the specialist hospital will be able to give you firmer answers of the situation as will be able to do a fetal cardio scan which is more advanced than a normal one. There are so many possible heart conditions and they should hopefully be able to give you an idea of what you're dealing with. It is a rollercoaster though and hope you get a better idea of what's going on asap. X

Also the charity Tiny Tickers might be helpful to check out once you know a little more.

Hi, I am sorry you are going through this. I really hope you don't have to wait long for your fetal cardiology appointment and you can get some clear answers about your baby's heart soon. Was everything else normal in the scan?

My baby was born with a serious heart defect which was picked up in the 20 week scan and I remember how stressful it was not knowing what was going on. I also remember working myself up in to an anxious mess by googling too. I hope you are okay and are managing to get some rest at least x

Thank you for sharing your heartbreak, and I'm so sorry to hear your outcome. We were also told this morning that we're facing a TFMR. Our baby girl has got Hypoplastic left heart syndrome (HLHS) and additional heart complications.

I'm just numb with disbelief and trying to prepare myself for the days ahead.

I'm so sorry to hear you also had to endure a TFMR.

Thank you for your frank and honest reply, it genuinely helped me process it - knowing that finding such abnormalities is exactly what the 20wk scan is for. It's so easy to get wrapped-up with finding out the sex, which now barely even matters.

May I ask how you prepared for the TFMR? I'm going to our local hospital for the 1st medication to be administered on Sunday, and then Tuesday I'll be admitted.

Sending all my love to you and your little one, you're certainly in the best hands at GOSH xx

Thank you.

I've also been told about ARC and CHF, I'll take a look at them all

Thank you for your kind message. How is your little one now?
Sadly, our baby just has too many complications- alongside HLHS, she also has a valve that hasn't formed and the hole between the bottom left & right chambers is far too small.
She really didn't stand a chance. x

@Serendipity2023 I am so so sorry to hear this. It is one of the most heartbreaking things to have to be told and then have to go through. We are 5 weeks today since it happened and I still can't quite believe it has. It is a tough road but it can also be a beautiful one. Our daughter was our first baby and I felt so privileged to be able to deliver her. She was born at 25 weeks and although I was scared to meet her, we did and she was beautiful. It was so peaceful and the midwifes were amazing. A really horrendous experience was somehow made as perfect as it could be. Please remember you are not alone, it can feel like a super scary and lonely place but we are all here and I will be thinking of you xx

I'm so, so sorry that it's bad news. I wish you all the strength in this world and a big hug from me.

As for your question how I prepared, you don't ask if you mean physically, emotionally or the baby so I'll answer all three.

Well, emotionally badly so no advice there. It felt like an awful roller coaster that just happened to me and I needed therapy afterwards to deal with it. That helped a lot, so if you continu to feel too overwhelmed then please seek help. It's okay to be sad, no reason to feel/stay traumatised.

As for physically, I don't remember everything. I had medication before going to the hospital but don't remember how far before (english is nog my first language so I hope you follow). I had medication every few hours while in hospital until the birth. I had an epidural because I couldn't face contractions on top of everything at that moment. She was born after about 27 hours, the birth itself went really easily. She had already died during the birth. I held her for a while. They put her in icy water next to my bed so I could look at her. The idea sounded a bit strange to me before she was born but it felt the right thing to do when she was here. We took pictures of her because we wanted to remember her. If in doubt, you can ask a nurse to take pictures and you can put the sd card in an envelope. You don't have to see them but when time passes you might want to and then it's there.

As for preparing for the baby, I had decided that I wanted her cremated so I bought a pretty white basket with a lid, a teeny tiny cloth rabbit to give her and a nice piece of patterned cloth (a baby muslin) to wrap her in. I brought extra cloth with me which ended up being a good idea because it needed changing just before the cremation. The hospital had a bag from a charity containing a tiny handmade crocheted blanket, head covering and crochet butterflies and I used them as well. I also had cards made with her footprints on them and sent them to our families and I have one framed in my bedroom.

Everything that I wanted or not wanted to do before she was born, I changed my mind during. I even changed her name. It feels right that I followed my feelings even when they changed.

I took time to heal as well as I could. I'll never be okay with losing a baby, but I needed a time out before TTC again, and I got pregnant a year later. I stayed anxious all through the pregnancy and had trouble bonding during pregnancy but that all ended well and I bonded very quickly after birth. So if you ever do have another child, you might not feel the same as you did now, and that's okay too.

And you're really, really going to be mad with anyone who calls it a "gender scan".

Again a big hug from me. There are no words to make you feel better in this moment but if there were, we'd give them to you

@Serendipity2023 I am so sorry you have had such bad news today. I know nothing I say will make you feel any better but I am thinking of you and sending hugs.

Thanks for asking about my baby too. They needed surgery at 3 months old and will do again (mostly likely when a teenager) but they are doing really well which we are so thankful for. I wish you would have got better news today x