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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Heart defect 20 week scan

19 replies

user1485778793 · 16/02/2017 19:24

I had my 20 week scan today, they detected a defect with baby's heart. They weren't able to diagnose anything, I need to go to a different hospital for that. I'm waiting for an appointment.

On top of work related stress (from another thread) I'm feeling like shit.

I'm gutted. My cousins baby died at 16 months just before Christmas because of a congenital heart defect. I'm worried we'll be dealing with the same issue.

Anyone else had this?

OP posts:

sherbertlemon17 · 16/02/2017 19:38

Hi lovely, stopping by to offer a hand to hold My DD who is now 14 months was diagnosed with a Heart anomaly at 20 weeks too. I completely get how you feel and it knocks you for 6!

There are so many things it could be... some defects are serious some are very minor but in either case you will have fantastic care from the paediatric cardiologists and in more cases than often there will be something they can do about it.

After our 20 week scan we were given a couple of cardiac scans, on top of any other scans I would have had and was also put under a consultant. They also wouldn't let me go over 41 weeks.

Do you have a date for your next appointment?

sherbertlemon17 · 16/02/2017 19:39

Btw, I'm really sorry to hear about your cousins little one

NataliaOsipova · 16/02/2017 19:41

So sorry to hear that. If it's any consolation, the same happened to a friend of mine....whose DS is now 4 months old. He needed an operation after birth and will need another later this year, but the prognosis is really good. He won't be an Olympic athlete, but neither will 99.9% of us.

Hoping for some good news for you.

mrsBeverleygoldberg · 16/02/2017 19:44

So many heart defects are very treatable nowadays. It's obviously not what you want to hear, but it doesn't mean the end. It's not necessarily the same as your cousin. It's not knowing that is the worst. When you know you can deal with it.

Original poster

user1485778793 · 16/02/2017 19:50

Thanks for your replies and reassurance.

I go to antenatal every 2 weeks because of diabetes and have extra scans. They said the other hospital will ring with an appointment probably within a week.

I'm really hoping that as all his other checks and growth rate is good everything will be OK. They are sending me to leeds genteral infirmary which has had a previous bad rep for children's heart surgery.

OP posts:

sherbertlemon17 · 16/02/2017 19:58

Fingers crossed for you OP. I'm sure you will be in the best hands... they wouldn't refer you to that hospital if they didn't think that wasn't the best option.

And plus, not all Heart defects end in operations My DD has something called a VSD, which is basically a hole in her heart which she is scanned for every now and again to see how it is closing. No operations necessary.

Although it's a really sh*t thing to be told your baby has a problem, I think it is incredible that they can pick it up at 20 weeks! And now you have another 20 weeks to monitor it and plan for the best care.

Marmitemadmummy · 16/02/2017 20:05

There is a website called Heartline Families who have a forum that was very useful when my DD was diagnosed at a scan.

Original poster

user1485778793 · 16/02/2017 20:22

Thanks

I'll have a look at that site.

It's the not knowing that's driving me mad

OP posts:

Littlebelina · 16/02/2017 21:53

Hi user. We are in a similar position but a little further on. Seen a fetal cardiologist and have a preliminary diagonis but they can't get a clear picture just yet. We need another scan in a few weeks to see if things have got worse. Either way we are looking at open heart surgery which is scary but children's heart surgery has come along way. Leeds is a specialist level one children's heart hospital so you'll get the best care. One thing they may suggest is an amnio to check for underlying conditions. You will be given the pros and cons of this. We went for it and the thought of it was much worse than reality. Now waiting for full results. Good luck. Look at heartline as suggested by pp

DirtyDancing · 16/02/2017 22:51

Remember you have a choice about which hospital you use. So if you are not satisfied with Leeds, then make sure, should it come to it, that you ask to go to a hospital you are satisfied with.

www.nhs.uk/NHSEngland/AboutNHSservices/NHShospitals/Pages/HospitalsSummary.aspx

ReggaeShark · 16/02/2017 22:58

Once you get your diagnosis you can go to Heartline forum for advice on which hospital to go to for any surgery, should it be required. And once they have given you a diagnosis you can always ask for a second opinion if they say the prognosis is not good. Personally I wouldn't choose Leeds for surgery. Be kind to yourself while you are waiting.

ReggaeShark · 16/02/2017 23:25

Just to clarify I meant the parents on Heartline can tell you about other hospitals that also carry out any required surgery so that you can consider them as well when you do your research.

Littlebelina · 17/02/2017 08:13

Quick related question. Are heartline forums working for others? I registered at the weekend but can't get them to work but wasn't sure if it was just me.

Brolis · 17/02/2017 10:06

Op, I am sorry that you have had worrying news. The care that babies with CHD receive is amazing. Your little one will be very well looked after. I hope you get positive news at your next appointment.

I am struggling to get on to the Heartline forums too. If anyone has any tips or suggestions I would be grateful.

Original poster

user1485778793 · 17/02/2017 10:19

I tried but couldn't get on them.

Couldn't wait for hospital to ring me so rang them. They hadn't received the referall, it won't be till next week till I get an appointment

OP posts:

Littlebelina · 17/02/2017 14:27

That's rubbish user. Is there anything your midwife can do to hurry them up- mine helped when we didn't get a scan appointment through. Not knowing must be adding to your stress levels. Heartline have a Facebook group as well. I'm not a member yet as I know someone who is and I'm not ready to tell everyone yet.

harleysmammy · 17/02/2017 15:13

My babies dad was born with a hole in his heart and although not the most major defect, it really worried me when we got pregnant with our son. His brother also died of a heart problem in his twenties and when the family got checked for the gene, my sons dad had it. I was beyond stressed before 20 weeks and everyone was aware of what his dad has. I broke down in tears to my midwife because i was so worried and she said the majority of heart defects dont have any major, if any at all, effects on life and most of them can be fixed after birth. I, thank god, had good news that they didnt find any anomalies but i know how scary it is hearing the word heart defect, just know that it can be sorted 99% of the time and it isnt always a disaster. Try not to worry x

Original poster

user1485778793 · 17/02/2017 18:54

It's the not knowing that's killing us both.

I asked my husband what he would want if we were given all the options. Both of us agreed we wouldn't terminate even if we were given the worse news.

I asked for a sooner appointment but that was the first they had.

I can't help scour the Internet for any info...which doesn't help.

I'd ordered baby clothes online which arrived today. We have a pile of stuff for the baby in the living room, I just want to get rid of it, put it out of sight because it feels like he will never wear them or use the moses basket. Even though we don't know anything yet.

OP posts:

Littlebelina · 17/02/2017 19:35

I'm not going to tell you not to search online because I couldn't help it myself. Just remember every case is unique and try not to worry too much until you've seen the cardiologist. Some heart defects are quite minor and may just need monitoring.

If you can't bear to look at the baby stuff at the moment is there somewhere you could hide it or ask someone to keep it for you? I've had to hide all our scan photos as couldn't look at them

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