Referall to great ormond street

[whattobeexpected]

Hello, sorry for the long winded thread was wondering if anyone could share some info.

After a mix up at the hospital and having to refer myself to the midwife, by the time I had my scan I am 17 weeks with a little girl obviously I missed the chance to have the screening at 12 weeks and they took my blood test and the Down syndrome result placed me at "high risk" with 1/100, this isn't a post about being worried as such, as my partner and I have decided not to do an amino and what will be will be. But they have me booked for anomaly scan in 2 weeks. The only thing that has started to panic me terribly is they have referred me to great ormond street for a feral heart scan, I find this abit daunting as most people I spoke to was not offered this? Someone suggested because they royally screwed up my scan dates (I was adamant I was further along and kept telling them) but they was not listening that they are trying to cover themselves? Also because they do not have my 12 week scan info and just my blood test they don't have much to go on, as the scan I did have the sonographer said baby was healthy?! Sorry for rambling on and thank you for any replies!

[thingymaboob]

Where do you live? Fetal heart scans are only done in certain places as it's very specialist. If you live in London or just outside it's probably the nearest one.

[whattobeexpected]

Yes I live in London she did mention it was the closest! Is this offered to everyone deemed "high risk" then? As that is what panicked me the most!

[whattobeexpected]

Hi AnUtterIdiot,
Thank you for your response!
Here is where it gets complicated (for me) I went for my what was supposed to be 12 week scan, to be told no you are 17 weeks, he then checked the baby and said everything was healthy and all was left was to take my bloods for the downs etc. I was given a letter for my 20 week anomaly scan date and time and was sent away, two days later I received the call to say I was high risk and they would like to see me, I booked a private scan and told the sonographer about my concerns and she then told me that she can't see anything wrong with the baby (can't say for certain obviously) but to enjoy my pregnancy, I spoke to my midwife and she said the only other thing besides the anomaly and amino is a heart scan at GOSH! That is why I'm panicking abit, i have only ever seen my midwife once in the beginning who set my first scan date and only took my blood pressure. Sorry for the long post I just don't have a clue about this as it is my first pregnancy and anyone I spoke to with a high risk (cousin was 1/20) said they only had the anomaly scan to check for markers etc. Hope your twins are well and thank you for sharing your story x

[whattobeexpected]

All I was given in my first midwife appointment was a bumper pack, and my first scan was a letter with my "fetal measurements" who I gave to my private sonographer and she said all is fine, it says "heart activity present, amniotic fluid: normal. Placenta anterior high, normal, structure normal"
Then gives me dates time etc for my 20 week scan. But this hospital is notorious for messing up antenatal and scans. This is why I'm so scared, I will handle whatever the outcome will be, but I am just left here with the only thing midwife said to me was "wellllll we don't have the 12 week scan measurements to run with your blood test so you are high risk" x

[whattobeexpected]

Thank you I will, I rang my midwife 9 times yesterday and never answered nor a phone call back. I may have to change hospitals as this one has a terrible reputation and has been in the papers etc. Everyone I explain it to can't work it out either.

[whattobeexpected]

All she said to me over the phone was "your downsyndrome result has come back 1/100 which places you at high risk so would you come in to talk" so when we did talk she said that they have no 12 week measurements to weigh it up against? Then offered me an amino which I declined, then said well you have to come back in 3 weeks for the anomaly scan, but another thing we can offer is a in depth heart scan at gosh that looks for any defects they will be in touch themselves" and that was Friday! My anomaly is on the 13th October.

[ForgivenessIsDivine]

From the midwife comment, it sounds like they cannot assess your Downs risk without the 12 week scan measurements so they have assumed a risk of 1/100 rather than the blood test results put you in that category.

2 sonographers have seen your baby and did not have any concerns. It is unusual to send you for additional screening without explaining the reasons.

[CountessOfStrathearn]

That's what would happen in my local hospital, although GOSH sonographers and doctors come to do a fortnightly fetal echo clinic, normally at 16-17 weeks and then again at 23ish weeks, and then will see anyone with significant issues in GOSH for further scans.

Basically anyone with a high nuchal or high risk blood result for Down's or T1DM, for example, is offered a fetal echo.

[CountessOfStrathearn]

"they cannot assess your Downs risk without the 12 week scan measurements so they have assumed a risk of 1/100 rather than the blood test results put you in that category."

This won't be the case. If you miss the nuchal scan, you can have the quadruple test, which is just based on blood results:

www.nhs.uk/conditions/pregnancy-and-baby/pages/screening-amniocentesis-downs-syndrome.aspx

[scaevola]

Info here on referrals for scans at GOSH:

www.gosh.nhs.uk/medical-information/procedures-and-treatments/fetal-heart-scans

Try not to worry ahead of time. Being high risk does not mean anything is wrong.

Even if it does, you are being seen at a centre of excellence, which means that any inwards treatment options will be state if the art.

[whattobeexpected]

Ok thank you both! Yes two sonographers, the one at the hospital showed me all the organs etc and checked the blood flow to them said all is well, checked the heartbeat etc. I was in there around half an hour he did not call anyone in nor suggest there might be a problem. That is what threw me when the midwife rang 2 days later. As soon as I got off the phone to her I booked a private 3D scan and the lady said although she can't say for certain she sees no reason to be concerned and to enjoy pregnancy? I just find it confusing that for example when I asked my cousin how hers went she was put at 1/20 at around 16 weeks, decided against an amino and waited for her anomaly scan which when came back put her odds up as there was no definate signs. No heart scan referall? Sorry if I am rambling I just can't make sense of any of this and is really stressing me out x

[whattobeexpected]

Thank you scaevola!
I suppose I'm more blindsided by the inconsistency of it all which (blame it on the hormones) had me paranoid as why would they suggest all is well with heart, until my blood test come back then refer me to gosh? Is it just a precaution they take when you are considered "high risk" etc.

[whattobeexpected]

Also the only thing she said about the gosh referall was "with Down syndrome sometimes it follows with heart defects that we can look closer at using a fetal heart scan, but we do not offer it here at this hospital the closest one to you is gosh so I will put it forward and they will contact you"

[GuntyMcGee]

You'll have been referred for a cardiac scan because of the increased risk downs result from your quad test. They're usually done at 16 weeks, but because of your dating (12 week) scan being later than usual, it would seem that they're going to do one asap.

[GuntyMcGee]

Also the only thing she said about the gosh referall was "with Down syndrome sometimes it follows with heart defects that we can look closer at using a fetal heart scan, but we do not offer it here at this hospital the closest one to you is gosh so I will put it forward and they will contact you"

That's it - it's standard procedure with increased risk screening

[CountessOfStrathearn]

"Is it just a precaution they take when you are considered "high risk" etc."

If you were being seen in my local hospital, then the answer would be yes. It is pretty routine for 'high risk' babies.

I'm surprised that your cousin wasn't offered it, but perhaps her hospital/the sonographer was able to do a more detailed scan (it is a far more specialist scan compared to a 'normal' anomaly scan - at 16 weeks, the heart is about the same size as your little finger nail) and could check for heart problems at the time, only referring on concerning ones.

(Lots of experience with fetal echos here. Lost a baby due to a very significant heart defect so all future pregnancies have been high risk and have seen GOSH for fetal echos etc.)

[whattobeexpected]

GuntyMckee

Ok thank you, I know it must sound like I'm moaning etc but I know a few people who were placed at high risk but had no gosh referall, but then they had the 12 week scan results too where I missed it.

Thank you again everyone, helped me put it together, Google just terrified me after about 5 min of searching!

[whattobeexpected]

Sorry to hear that countess,

And sorry if I sound like a whinging little girl at the thought of a referal when you have been through it and then some. X

[GuntyMcGee]

I didn't think you were whinging at all! You're understandably worried and when you're given a lot of information it's hard to take it all in. I can imagine that you'd heard referral to GOSH and the rest was a big blur!

Wishing you all the best and a happy healthy baby xxx

[Oysterbabe]

We had a heart scan this time because our DD has a small defect so greater chance of next having one. You've been referred because of your high risk result. Heart defects are a soft marker for Downs syndrome. I'm sure everything will be fine.