I’m a specialist screening/fetal medicine midwife

[FMMidwife]

Obviously I can’t comment specifically on peoples individual pregnancies or plans of care, and there is a really informative and brilliant AMA below by a midwife. But if anyone had any questions about this specialist area I’d be happy to answer.

Background.... trained in economically deprived area, but have been working in a very middle class (and therefore older mothers, and therefore more issues with abnormalities) area for 11 years. Primarily worked in triage, birth centre and home birth before specialising two years ago.

@NotSoThinLizzy we don’t bother with PAPPA any more, we do UAD at 20 weeks instead.

@YukoandHiro I think that’s the received wisdom but it’s not 100%. I don’t have access to any stats right now though.

Thanks for replying my hospital just started doing pappA in the last year

Have you had any involvement with perinatal hospice/palliative care? Do you think more women would carry babies with fatal abnormalities to term if this was consistently presented as an equal option to termination?

Can scans pick up serious heart murmurs?

@Boyo7 that’s a really interesting question. I have organised two babies to go to a hospice (organised antenatally), neither lived long enough to be admitted sadly. I think it’s quite a big undertaking to move a baby from NNU to the hospice and that’s the point it seems to fall down. I must admit though that hospice care isn’t something we raise as part of the decision making in whether to stop the pregnancy or not, but is rather raised when the woman has already made the decision to continue. It’s a good point that perhaps it should be raised before a decision has been made. We don’t have a robust relationship with a hospice at the moment though for me to be comfortable offering that. In fact communicating with our own paediatric department is one of the most frustrating bits of the job.

I carried my baby to term and she died neonatally, just a few hours after she was born, but had had a care plan organised with the hospice should we have been fortunate to have had more time than we did. It's something I have since read quite a lot about and it seems to be more of a thing in the states where

'hospice' is just a broad term for a palliative care plan, not necessarily a place. I think studies have shown that women who carry to term in these situations have less complicated grief longer term...

@movingontosomethingnew it would depend on the cause of the murmur

@Boyo7 that’s really interesting. I’m sorry to hear about your little girl. We try and get a care plan in place for all our anticipated severe anomalies and they meet the paeds and have a tour etc. That’s the best we do at the moment.

@Alb1 I’ve just started working for the NHS. Whilst waiting for the kettle to boil, one of the consultants came in, and introduced himself to me. I said he wouldn’t remember me, but I knew him already as he’d treated my son years before when he was a baby in NICU. He was absolutely thrilled to hear there had been a positive outcome, even though it was several years later. Do write, I’m sure they’d be very happy to hear about your DC.

How much training/support is there for the professionals involved in the frontline of a woman receiving a late diagnosis that her baby has a condition that is 'incompatible with life'?

And has this improved in recent years?

I ask because that woman was me 13 years ago, and I had some excellent care (consultant, midwife in the delivery suite), some not great care (sonographers/fetal medicine midwife) and some absolutely appalling emotional abuse from the 'bereavement midwife'. It took me years to come to terms with how she treated me the day after I had birthed a dead baby, and I still horrified about her conduct.

My impression was that she had no specialist training whatsoever, and was both professionally and personally completely unequipped and unable to do her job.

@christinarossetti19 absolutely none I am afraid, at least initially. I had a two week handover from the outgoing mIdwife and a band 8 who flits in and out of the office. I suppose they think general experience as a midwife will equip you with those skills. I have definitely made some blunders unfortunately.

On the job I have had training days from ARC etc which have helped.

we had fantastic support from one of your colleagues 10 years ago when our baby was diagnosed with dandy walker.
is that something youve ome across . i had numerous MRI scans whilst pregnant to look at her brain. can MRI scanning whilst pregnant cause any issues potentially

@littlebird88 MRI is considered completely safe.

I’ve supported women whose babies had DW malformation twice, both chose TOP. May I ask what you ended up choosing to do?

Have you had of heard of any babies with deformities from zika virus in the UK?

I'm pregnant after being in bali but had no symptoms and neither did my husband of the zika virus but very worried for first 12 week scan

OP such a shame my trust don’t do NIPT but im so pleased other trusts do for the women who are pregnant now. I wouldn’t wish the worry on anyone. Thanks for being amazing

Hi, I'm also interested to know about Zika, I conceived in a Zika outbreak country (not intentionally) and have not been ill but may have been exposed as well as my partner.

I have had a 12 week and 20 week scan and everything was normal at each one but I am having a 28 week one too because of the Zika risk. Do you know how likely it would be that an abnormality from Zika would present at this stage if it hadn't already? I have no idea at what stage those development issues would occur.. thanks very much.

At our last team meeting the consultant said that PHE had reported no cases of abnormality related to Zika in the UK. Hence the extra scans could now be done by sonographers rather than consultants, and to expect further relaxation of the protocol for possible exposure to zika. I haven’t verified that myself.

@Passthecherrycoke yes we are really lucky to be able to offer this. It surpasses the NSC guidelines though so the funding is constantly under threat.

@FMMidwife
we chose not to terminate.
Although life isnt always easy it isnt as difficult for her as we imagined.
We are very lucky.
We felt at the time we were strongly advised to terminate.

I am slightly confused about the NIPT in your area. Does everyone get it - assume so if high risk combined test ladies aren't told if they are clear on NIPT? If everyone gets it, why do the combined test? Does everyone get their NIPT result and/or is everyone screened to check that the combined test and NIPT are aligned?

Also, thanks very much for all that you do. I didn't have particular abnormalities diagnosed in pregnancy but I did have a couple of big unexplained bleeds late on. I can only imagine the anxiety that you must need to absorb on a day to day basis.

@littlebird88 I am so pleased she is doing well.

@thetoddleratemyhomework we run it as a two stage test. So we take two vials of blood, and on one we run the combined. If the combined comes back as low risk (risk cut off 1:250 or higher) the combined result is given to the woman. If the combined result comes back at 1:250 or higher, the result is not given to the woman but instead we then run the NIPT on the second blood sample. This will then come back as screen negative or screen positive and that result is then given to the woman. The NIPT renders the combined result obsolete.

Interesting. Why not just run the NIPT so only one test and not bother with the combined? does it cost a lot more? Or are there other benefits to the CT? Just interested - I think my result came back at around 1 in 5000 and I thought that level of certainty was fine, especially since I wasn't sure what I would do in the event of a positive result anyway, but a friend decided to pay for a private test with a 1:1000 combined test result. I can see why women who know they definitely would keep the baby don't have the combined test - being given a result framed at a level of risk definitely makes some women more anxious.