25 March 2016

Research Friday: Saving Babies' Lives

NHS England (2016)

Welcome to our first 'Research Friday' post, where we look at, comment on, critique and generally tear to pieces research or guidelines that relate directly or loosely to trisomy 18. Please add your comments!

This week, I thought we'd look at the new NHS England guidelines on Saving Babies' Lives, partly because it just came out in its final version this week, partly because we ourselves used the draft version of the guidance to argue for frequent scans when we knew that I had low PAPP-A - and therefore I'm interested in what they come up with - and partly because guidelines on reducing stillbirths are rather relevant to the trisomy community (with its very high risk of stillbirth) even when they are not T18-specific guidelines.

Check out the new guidelines (PDF).

"Saving Babies' Lives" document cover


Looking at it, even from the foreword it is clear that the focus is going to be on fetal growth. Which is great, considering that we know that adequate monitoring of fetal growth and appropriate intervention when there are concerns is a major factor in reduction of stillbirths. This guideline is welcomed by all the major groups: RCM, BMFMS, MMBRACE and RCOG, as well as SANDS. There's a lovely statement about evidence-based medicine: 'Evidence based medicine is the paragon but the search for perfection must not become the enemy of the good', suggesting that it is far better to implement these guidelines based on weak evidence and hopefully save some lives, rather than waiting for the gold standard, perfect evidence. Perhaps physicians should apply this same approach to trisomy 18 treatment!

Reading the statements from all of the organisations, some of them don't sound especially positive about this care package being introduced without good evidence to support it. They give strong reminders that outcomes must be evaluated. I think we can all agree with this, as there is a long history in obstetrics of assuming interventions make more of a difference than they do.


The introduction acknowledges the UK's terrible stillbirth rate: higher than many places in Europe, and not declining at a sufficient rate either. It mentions the excessive variation across regions of England, which sadly is related both to population factors and to care provided. I live in a borough with a higher-than-average stillbirth rate, in a city with a higher-than-average stillbirth rate, and our hospital was choosing not to implement interventions which reduce the stillbirth rate as a matter of policy. Since they still hadn't implemented the NICE gestational diabetes guidelines last year - and those guidelines first came out back in 2008 - I'll be interested to see how long it takes them to implement these ones.

What does the care package focus on?

  • Reducing smoking in pregnancy
  • Risk assessment and surveillance for fetal growth in pregnancy
  • Raising awareness about reduced fetal movements
  • Effective fetal monitoring in labour

This all sounds good. Implementing all of the recommendations together has more impact than picking and choosing! The last three are relevant to those of us with T18 pregnancies, while the first is a known risk factor for stillbirth; if you've added in trisomy 18 to your risk factors, I suggest you seek help to give up smoking. Smoking and trisomy 18 together would not look good for a livebirth!

So let's look at the four elements


The guidelines suggest standard carbon monoxide testing of all pregnant women at booking, with those with high levels being referred on to 'stop smoking' services. Of course, women can opt out or decline, but the accepted standard will be universal testing. This is already implemented in many trusts, though not in the one that we used.

I have to be honest that this sits uncomfortably with me. I accept the evidence base that it reduces smoking in pregnancy, that this is an effective public health intervention. However, I think it is medical paternalism at its worst. They don't trust the mother's word now: if you say, "No, I don't smoke," they say, "Great, here, do this test so I can check!" I'm not sure this builds trust between parents and providers, and in my view, it reinforces a culture of medical paternalism. Yes you can opt out, but what's the betting that everyone will then assume you're a smoker who doesn't want to give up.

I'm sure this can be done in 'better' ways than I've just described - for example, asking a woman whether she smokes and following up by asking whether she wants to see how much carbon monoxide she has in her body in order to assess her smoke exposure. However, if we provide adequate information on the risks of smoking, are generally non-judgemental about it, and have good access to 'stop smoking' services for women and their families who want to access them, then I personally think it is up to the mother if she wants to take the increased risk of stillbirth. I may do some more reading on this topic but my current opinion is that a slide into accepted medical paternalism for the good of the baby is dangerous and therefore I am giving this recommendation a thumbs down for now.

Fetal Growth Monitoring

This should interest all of us with T18 pregnancies: our babies are almost universally small.

Recommendations in this section include:
  1. Use the RCOG (Royal College of Obstetricians and Gynaecologists) or care bundle algorithm to identify risk and monitor pregnancies appropriately (discussed in more detail below).
  2. Assess women at high risk using serial ultrasound measurements and plot estimated fetal weight on a chart.
  3. Low-risk women to be monitored by Synphysis Fundal Height (SFH) and plotted on growth charts, customised or otherwise.
  4. Audit and publish (on a local dashboard or similar) the hospital's rate of Small for Gestational Age (SGA) babies, the antenatal detection rate, and false positives and negatives.
  5. Perform case note audits of missed cases in order to review practice.

Sadly, they shy away from insisting on customised growth charts. There is an acknowledgement of the increased burden on hospitals not currently implementing the serial ultrasounds, and of the importance of accurate measurements. They don't recommend scans be done more frequently than every 3 weeks (which may itself be too infrequent in a T18 pregnancy at late gestation). However, as many of us with T18 or low PAPP-A have issues even getting 3-weekly scans, this guidance should give us valuable leverage to step up surveillance.

The algorithm

Women in the following categories are considered to be at high risk of having a small baby:
  • Age over 40 years
  • Smoker at booking
  • Drug misuse
  • Previous SGA baby (below 10th centile)
  • Previous stillbirth
  • Chronic hypertension
  • Diabetes
  • Renal Impairment
  • Antiphospholipid syndrome
  • Large fibroids
  • BMI over 35
  • PAPP-A below 0.415 MoM
  • Fetal echogenic bowel
  • Severe pregnancy-induced hypertension or pre-eclampsia
  • Unexplained antepartum haemorrhage

I am delighted they went for the higher level of PAPP-A. I have seen far lower cut-offs. However, they are less willing to commit to the frequency of ultrasound scanning, suggesting merely 'serial ultrasound scanning with dopplers from 26-28 weeks gestation'. I think this is going to make assessing outcomes difficult. Serial scans according to our hospital would be one or two extra scans; others do 3-weekly scans, as per the Perinatal Institute guidelines. Parents with T18 pregnancies: I would suggest you push for 3-weekly scans as a minimum. Everyone in this list has a considerably lower risk of stillbirth than you.

If there is abnormal growth/dopplers, see the RCOG's Green-top Guideline on management of the SGA fetus.

Fetal Movement

Here, all providers are to inform and advise women on how to manage reduced fetal movements by 24 weeks gestation, and to have a clear protocol for managing women who present with reduced fetal movements.

I agree that this is important. I see all the time women saying their baby has slowed down and should they do anything, on trisomy groups and elsewhere. On trisomy groups this is often closely followed by a stillbirth post. The message that 'if your baby's movements slow down you should go in for assessment' could definitely do with getting out there.

I'm not sure about the efficacy of a leaflet, however, as a means of doing this. I know midwives are meant to have a discussion as well, but will they, or will they hand the leaflet to women in their 10-minute appointment slot and not have the full discussion that is needed? Is this leaflet in multiple languages (remember that non-English speakers are at higher risk of stillbirth)? What about those who are illiterate? How about using new technology, say a YouTube video, in addition?

The proforma for managing women who do present with reduced fetal movements is very clear. Auscultating with a handheld doppler or pinnard and a CTG if appropriate are suggested, as always. However, women who have risk factors for stillbirth or an SGA baby should also have an ultrasound scan with dopplers within 24 hours. That is new; it will be interested to see how this is implemented.

Fetal Monitoring in Labour

This standard looks at staff training on fetal monitoring, and the use of a buddy scheme for assessing CTG monitoring. The aim is to reduce intrapartum stillbirths and brain injury.

Fairly standard stuff: all staff should have up-to-date (within the past 12 months) training on fetal monitoring before caring for a woman in labour, and a formalising of the schemes many hospitals are adopting of having a second pair of eyes look at each CTG, as one tired member of staff who has been staring at that bit of paper for hours may not be the most objective.

Our overall opinion

Nice to have this all formalised in a document to wave at physicians, so thanks for that, NHS England. Great that they did go for the higher PAPP-A cut-off, but basically a lot of this is a watered-down version of the Perinatal Institute guidelines, which do seem to reduce stillbirth. I understand that resource costs are an issue, but surely it would have been prudent to suggest 3-weekly scans as a starting point and implement trials elsewhere into, say, 4-weekly scans. Simply saying 'serial scans' is a cop-out, I'm afraid. I think this care package is still going to allow the wide variations in practice we currently see, and because of that, I'm not sure it will achieve the hoped-for results.

Trisomy 18 relevance

For those of us with trisomy 18 pregnancies, I suggest we use this guidance to push for serial scans and dopplers (my view, based on no evidence at all, is that 3-weekly is too infrequent at late gestations). I suggest we all take away the message about reduced fetal movements, and as we fall into a high-risk category, suggest we insist on our scan, with dopplers, within 24 hours.

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