Dating scans after previous baby loss

[KarenHL]

Our son died shortly after birth 2010, the PM found it was due to a genetic condition. There is a 1 in 4 chance of this baby having the condition - and it could have a similar outcome.

I am now 8½ wks (apx). I was told that I would have an early dating scan, with a view to an amnio at 15wks. Told today that the dating scan would be at almost 14wks. Not really comfortable with an amnio because of the misc risk, but feel I have to as otherwise cannot get the referral to the specialists who know about this cond. And I suppose in some ways it's better to know, than spend X weeks wondering (cond does not always present before birth).

Not happy. WIBU to have a chat small rant at PND and ask if they can bring it forward? Scared & stressed enough as it is.

(Have X-crossed posted with ante-natal forum)

Sorry for your loss OP. I think you are totally justifed in wanting a scan before 14 weeks especially as 14 weeks is too late fir a nuchal scan which is a standard scan we all should get which helps screen for genetic abnormalities. Are they really not offering you a nuchal?

Would you consider going privately? If you are anywhere bear Lindon I would highly recommend a private scan at the Fetal Medicine Centre. It is run by Prof Nicolaides who is an international expert in Fetal medicine and they scan for all sorts of abnormalities that a regular NHS scan may not look for.

OP, I'm really sorry about your son.

My DH and I also carry a genetic disorder which has a 1 in 4 chance of recurring with each pregnancy. Each time I have got pregnant since we lost our first baby at 22 weeks PG, we have just had to call the Fetal Medicine Unit at our hospital and arrange to come in for a scan with the consultant at around 11 weeks (our condition can only be diagnosed by ultrasound, not amnio or CVS). I don't have to bother with GP or midwives until after we have had the initial all-clear from the consultant (pending a more detailed 20 week scan). I'm very surprised that your hospital don't offer a similar procedure and would strongly advise speaking them about this and asking them to bring your appointment forward. With your history they should be doing everything they can to try and alleviate your anxiety (difficult, I realise) and waiting until 14 weeks for even a dating scan seems pretty unreasonable.

Wishing you loads of luck for this pregnancy.

I am so sorry op! We lost a little girl last year due to a growth problem so I know how scary following pregnancies can be. Have any of the hospitals in your area got a specialist grief midwife because they are amazing advocates and will be able to fight your corner and push things through fo you. Be firm and insistent and don't let them fob you off. Also sands will be able to put you in touch with people in similar situations.

Gaaah! We have declined Down's screening & the hosp are aware that we would not consider termination. Every turn on the way it seems to feel as we get put on the back burner, because we aren't being 'reasonable' in deciding on termination before we even know what the damned result will be! Not only that, with this cond, it is impossible to predict what the case scenario is going to (eg baby die soon after birth, or baby live with monitoring & poss health issues).

I hate the NHS (but am grateful it's there). I wish we could go private (but no money). The stress is making DH and I sick.

We went to Prof N's clinic in 2010. Helpful staff, it was difficult getting referred there on the NHS (it was them who confirmed the bad news). Not been offered the bereavement MW's services yet.

If I were you, I would just relax and not even bother with any scans and certainly not with the amnio. In your situation, because the outcome is not certain (i.e. even if it gets confirmed that your baby has some something you say you won't know to what extent and kids are fine more often than not) and you are having your baby, then why put it and yourself through amnio/scan and all this stressful process? I know the whole situation is highly worrying but am afraid, having been through something similar, it will not be as calm as other pregnancies until the end now but you just have to relax and enjoy this pregnancy as much as possible. Stop thinking of the past, it does not need to repeat itself xx

Just to add - there is a huge 75% chance that everything is fine (and hopefully you have already had your share of grief!) and they can only help the baby once it is born. So don't put yourself through having to justify your baby's right to life, just do what feels comfortable to you. You can always sort out seeing a specialist if needs be later and no need for amnio at 15 weeks if they would not be able to do anything afterwards anyway and there's risk of affecting a healthy baby xx

I see your point JanMom. With our son, an issue flagged up on the 20wk scan - although it wasn't confirmed for another 8wks, nothing could be done, if he hadn't been as badly affected as he was, getting the help needed at birth, would be vital.

We've been given the impression we can't get the referral on that we'd like (in case there is an issue, eg everything at hosp needed, just in case) unless the Hosp know there is definitely an issue - which we can't tell without amnio, or waiting and waiting until either later scans (which we've been told there is no guarantee of having), or birth. I do not want to wait until birth to see if the baby's lungs/kidneys are ok, and then risk there being no available specialist & equipment - the specialists in this field are 45mins away. If the hosp would only agree to refer on, without 'evidence', we'd feel a lot happier.

I would like to relax, but all the hosp stuff so far (genetics/mws/pnd - combined with awful memories of how we were treated before & feeling backed into a corner), isn't helping. Poor DD is so excited after losing her brother, and I keep telling her to keep a lid on it, because I might mc or the baby might not live.

OP, have you tried contacting the consultant who dealt with you last time direct? In my experience, they are often willing and able to cut through admin, bureacracy etc and get things moving along. And knowing what you've already been through, I can't imagine that any consultant who has dealt with you before will want to think of you going through this extra anxiety and stress now for the sake of a couple of earlier appointments.

And surely there is already an issue, in that they know there is a 25% chance of a recurrence. I'm really surprised that they aren't trying to get you in as soon as possible to start having a look, even if there's not much chance of knowing anything conclusive prior to amnio.

I'm really feeling for you here, and it's upsetting to think that we might be getting such different levels of treatment/care all within the same NHS.

PSG, thank you for thoughts. Long story, but prev cons (different hosp) caused more stress! Not willing to go back there (only way you'll get me there again is unconscious!).

Have had more info today. Apparently no early scans here, unless I will be having a CVS - 'cause obviously, you need to be certain of the dates before the tests & CVS is much earlier than amnio.

I can see the reasoning, but the waiting is hard given the history. So basically, no more need (apparently) to see anyone except CMW in 2 wks, and dating scan in 6wks. I feel as if they see me as an overreacting nuisance - although there is a 1 in 4 chance this baby will be quite unwell (or die).

OK - sounds very stressful
I would go to the GP and ask for a referral to the early pregnancy unit for a scan.
Can you not phone the specialist directly, given your history they may see you without a referral.
Failing that you can demand to see a consultant but you have to be very firm ( or so my private consultant told me as I was being pushed from pillar to post when transferring back into the nhs after private ivf)
I am confused as to why you have declined Downs testing as this is the best route to speak to people that carry out amnios. Also the risk of mc with an amnio & CVS is about the same. I had a CVS and at that time where it was carried out their mc rate was 0. Could you go back and say you have changed your mind?
Also does your hospital have a screening midwife? I called ours this pregnancy and she was very helpful.
Sorry that all sounds a bit do this do that but it has taken 2 mmc for me to work out what I actually am entitled too and this time (4th preg) I actually just asked and asked until I got what I needed.

Good luck xx

Say you want a CVS, take the early scan, then say you have changed your mind. Sometimes you just have to play the system.

Or contact the PALS service at your hospital and ask them to advocate for you. Contacting the screening midwife is another good idea.

Approbate nuchal scan at Prof Nicolaides clinic would be £190. Is that totally out of your reach? You could call them and see if they'd make it cheaper without the blood test (which might not be necessary if you don't want Downs screening).