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Heartbroken - bad news at 20 week scan

(51 Posts)
1moretime Mon 06-Jun-16 19:07:21

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

1moretime Mon 06-Jun-16 19:08:39

This is the comments on my notes 😢😢

Gizlotsmum Mon 06-Jun-16 19:09:42

Oh hugs. Hope you get better news on Thursday. They can do so much nowadays.

1moretime Mon 06-Jun-16 19:11:00

Thank you hun. I know the hospital I'm being referred to is one of the best in the country. I just hope and pray there is something that can be done. Xx

ThornyBird Mon 06-Jun-16 19:12:19

Message withdrawn at poster's request.

Sgoinneal Mon 06-Jun-16 19:14:32

I haven't any advice just wanted to say it is genuinely amazing what they can do even in utero these days - good luck for Thursday flowers

RochelleGoyle Mon 06-Jun-16 19:14:58

Oh what horrible news. Really hope something positive comes from your next appointment OP. flowers

KittyandTeal Mon 06-Jun-16 19:17:05

Well, the good news is it looks like there are no other soft markers for a trisomy or anything.

It is heartbreaking getting bad news at a scan (we got a lethal diagnosis at dd2s 21 week scan) however, it is amazing what they can do with hearts once the baby is born.

It is really tough but the consultant will be able to give you more information about what they can do and how it might effect his/her life.

gingerbreadmanm Mon 06-Jun-16 19:18:54

I'm so sorry i know how tough this is. About this time last year abnornalities were discovered at my sons 20week scan so i know the worry you must be going through right now. (I'm in the north east too).

I think for now you just have to hope for the best. There is a charity called arc i think that have a phone line and website for people who get difficult news at scans. Have you had a look on there or could you?

Were you brave enough to ask them an outcome? Sorry if that is insensitive but that was the first thing off my lips when i was in your position.

MrPony Mon 06-Jun-16 19:19:16

I'm so sorry to hear this, it must be such a confusing time for you flowers The RVI is an amazing hospital, you and your baby will be in very capable hands there.
It's a good thing they've found it early on, as now you can prepare yourself and they can be prepared for babies arrival.

Good luck, I hope you find out some clearer information soon.

MumOnACornishFarm Mon 06-Jun-16 19:20:08

Sending you hugs OP. We found out at the 20 week scan that our DS has a fairly unusual congenital lung malformation which also posed a risk to his heart. It was terrifying, but you may feel more assured once you've met your consultants and surgeons. We felt so much better once we had a consultant who spoke like a human and not a medical dictionary, and the care & support for the remainder of the pregnancy was fantastic. Our DS is now thriving, awaiting surgery, but you wouldn't know there is anything wrong. Our surgeon is also amazing. Times like this you realise how good the nhs can be. I hope that you get some positive news soon. flowers

hopinghopefullyagain Mon 06-Jun-16 19:20:27

I was given bad news at a scan and understand how devastating it is. Our baby had similar heart issues but many other complications and sadly our story doesn't have a happy ending. But I also know of a very healthy 2 year old who had heart surgery as a very small baby. He's completely healthy now. I hope that Thursday comes quickly and you get the information that you need at the scan. Thinking of you.

FellOutOfBed2wice Mon 06-Jun-16 19:39:09

A friend had bad news at 20 weeks re her baby's heart but she now has a healthy six month old who's problems were fixed with surgery. Thinking of you x

TheOddity Mon 06-Jun-16 20:11:00

My heart dippped when I read your title. I'm so sorry this is happening for you. I just wanted to write to say I gave birth in RVI and it really is a fantastic hospital, you are in very experienced hands xxx

susannahmoodie Mon 06-Jun-16 20:19:54

At my 20 week scan with ds2 (at the RVI!) I was told they thought he had a hole in the heart. I had another scan in foetal medicine 3 days later and they said everything was fine. Ds2 is now 2y8m. They were some of the hardest days of my life and the relief was incredible: however in the meantime I did son much research on infant heart surgery (despite the sonographer telling me not to google it!) and found so many amazing stories. flowers while you are waiting, it is awful.

1moretime Mon 06-Jun-16 20:24:31

Thank you all so much for your replys. Hubby did say what Is the outcome. The consultant we saw today couldn't really tell us much she just said that baby will require surgery more than once & that once the cord is cut after birth is when baby will struggle. I cant think straight.
gingerbreadman thank you I will have a look on the arc website. I know RVI is one of the best. I just pray they can do something for my little one.
kitty&teal Im so sorry to hear about your dd2. I'm gonna have to try stay strong until we speak with consultant/surgeons.
Mrpony that's exactly what hubby has said at least they can prepare & be ready when baby arrives. RVI are the best.
mumonacornishfarm that is so reassuring to hear. What exactly was the problem with your DS heart if you don't mind me asking? Did he gave surgery after birth?
hoping hopefullyagain
Thank you for sharing hun & so sorry to hear that. I am so scared but hoping onto every little hope I can.
&
felloutofbed that's wonderful news does the baby have any long term complication's? Xx

gingerbreadmanm Mon 06-Jun-16 20:30:54

1more that is good i think? That they will require surgery? That means they are going to make it.

As others have said, they can do wonders these days and another scan may show something different.

Sending lots of un-mnetty hugs your way. Take a look on arc or give them a call. Chances are they have spoken to someone in your position before.

It may be worth a google too. We found a great website with lots of info on about my sons condition which really helped me come to terms with it.

1moretime Mon 06-Jun-16 20:37:38

theoddity it's so reassuring reading comments about RVI. Thank you.
Susannahmoodie wow I really hope they have got this wrong...or that I will wake from this horrid nightmare soon!!
So glad your little one is doing well smile the Sonographer told me not Google too bit it's first thing I done when I got home. Different things keep coming up & I don't really know what this condition is?
These next few days are gonna be torture!
Thank you gingerbread I really hope so. Thank you so much for all your kind words. Xxx

Broughtitatthe5anddime Mon 06-Jun-16 20:37:58

Hi my ds was diagnosed with a few heart defects at the 20 week scan, I can honestly say I have never cried so much. In the end he had heart surgery at 6 days old and pen heart surgery at 19 mos, he's a beautiful healthy 4 year old now with only 18 month check ups and no issues. He does have residual abnormalitis but no effects. It is hard going before and after birth but the care he received was amazing. I hope you get good news at the specialised scan

KittyandTeal Mon 06-Jun-16 20:38:26

Arc are brilliant, I cannot praise them enough.

If they are talking surgery after birth it sounds like it could be survivable. No one wants their children to have to under go surgery, especially so young, but I've realised that with these kinds of diagnosis you lower the bar slightly and generally do what you can to make it survivable.

It sounds like it will be a long old haul and a stressful time but that something can be done for your little one.

HoldTheDoorHodor Mon 06-Jun-16 20:44:27

The RVI is phenomenal and their SCBU is absolutely wonderful. What they can Dixon for premature and very poorly babies is staggering. If it turns out your baby does need surgery or assistance then you really are going to one of the very very best places.

I know 3 separate families have required additional care at the RVI for a variety of reasons and not one of them has a single complaint to raise about them. They really do deserve their reputation.

I know the time to your appointment will feel worrying and you'll be anxious so have some flowers

CarbyBarbie Mon 06-Jun-16 20:49:26

when i was pregnant with dd2 on my 20wk scan i was told her heart had a a hole.I had a further scan (and a few more for other reasons) and her heart is perfectly fine, it had just been a shadow, scariest days of my life,

Thinking off you OP i know its easier said than done but try not to google until you know 100% what your facing flowers

Sshsecretenclosed Mon 06-Jun-16 20:59:05

No advice to give but just know I'm thinking positive thoughts for you x

Jodie1982 Mon 06-Jun-16 21:09:07

I have no advice. But just wanted to send well wishes to your little one. flowers
Wishing you n baby all the best. X

ThornyBird Mon 06-Jun-16 21:45:25

I posted earlier, I thought with hindsight my wording was insensitive and thoughtless so asked for it to be deleted.

Dc4 was diagnosed with heart defects at 20 weeks. It was like my world stopped (again - it was that sort of pregnancy :-( ). The language used is terrifying and the not knowing was horrible.

We had a wonderful, gentle team who cared for us (dh, me and eventually dc4) and took time to explain things and reassure us as much as possible once we were in the foetal cardiology 'system'.

Dc4 is now 7 and thriving despite having a VSD and Ebsteins Anomaly. He has not needed surgery so far although he continues to be monitored (currently 6 monthly as we have relocated but it was annually).

Unmumsnetty hugs to you xxx

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