To think that recording pregnant women's drinking is pointless as well as invasive?

[Hardbackwriter]

If I've understood correctly, NICE have proposed that the mother's consumption of alcohol should be recorded on a child's medical record, to help with any future diagnosis of fetal alcohol syndrome. The British Pregnancy Advisory Service (quoted in this article: www.theguardian.com/lifeandstyle/2020/sep/16/plans-to-record-pregnant-womens-alcohol-consumption-in-england-criticised) have pointed that this breaches data protection rules, and that "Women do not lose their right to medical confidentiality simply because they are pregnant".

I have sympathy with this view, but I also just fundamentally think that it's quite pointless to record this information as it's surely self-reported? Women who have been drinking heavily are unlikely to admit to it, surely (and maybe even less so if it's going to go on their child's medical record for all time)? Are you not going to miss a lot of cases of FAS if you're ruling them out if the child's record said the mother swore she didn't drink, or did so only moderately? I assume there's a lot of under-reporting already - I've seen people on MN insist they know someone whose child has FAS 'even though she only had a couple of drinks in the whole pregnancy'; I'm guessing in the vast majority of cases the mother is drastically underplaying what she drank. Maybe she's even convinced herself.

I just can't see the point of this, and worry that it'll put off someone who could benefit from help with alcohol dependency in pregnancy seeking help if they know it'll go on the child's record. AIBU?

Most women I come into contact with who have drunk alcohol don’t receive judgement they get reassurance because the truth is we don’t know if their NYE binge or their glass of sherry with granny last Sunday is going to do anything!

Well if you don't know if it's going to do anything then why force women to have it on their record?

Secondly, good on you for being an attentive and supportive midwife. From my own experience, not all midwives are like you, in fact I've not met one like you yet.

Also regarding pregnancy notes being kept for 25 years - who has access to them? Can you clarify please, because that's actually quite an interesting point?

@Dinosauratemydaffodils

I’m so sorry that you happened to you. It’s appalling. Could you find the energy to complain?

I struggled with the way the midwives asked questions in pregnancy - looking at my rings “Your relationship is a good one right? No violence? Or arguments?”, Similarly “No difficulties with Mental health” Boxes on the computerized form already ticked NO....
Given that pregnancy is a risky time for women in relationships, we need to do better to make midwife appointments safe spaces to talk.

I can’t see how introducing this policy will help that, and can see how it could be harmful (just under half of all pregnancies are NOT planned).

I also question research articles that look generally at screening children’s learning and/or behavioral attributes, without listing what those are. A response to/professional evaluation of the above study is available here :- www.sciencemediacentre.org/expert-reaction-to-screening-study-on-uk-prevalence-of-fetal-alcohol-spectrum-disorders-fasd/

@PurplePansy05 I don’t force anyone to do anything, I ask a question and I take the answer whether that is “declined” “x units” or “0”

Part of my passion is empowering women, I have no problem telling a hesitant woman that they don’t have to answer a question, no they don’t have to have that vaginal examination and yes the CHOICE is theirs.

I’m sorry that you and so many others (including myself in one of my pregnancies) have come across midwives that are not focused on women and their choices.

So the antenatal handheld notes can be accessed by the child. For example if the child discovered aged 21 he/she has a condition caused from birth they could use the antenatal/birth notes to sue the trust for negligence

@Kidsaregrim I didn't say you force them, I meant it in the context of the new proposal which would effectively mean any disclosure however minor will stay on the record. But as you say, we actually don't know why it should be. Minor amounts likely aren't harmful at all, so why do that?

Also I take your point re notes, but surely this is all rather limited circumstances whereby there's some wrongdoing by the trust. I don't see the relevance of a mother having a small glass of wine or similar to the child's representatives bringing a prof neg claim against the trust. Therefore I don't see why such information should ever be recorded or disclosed for such purposes.

By definition kidsaregrim you aren't going to be aware of any woman who didn't feel comfortable disclosing the truth to you and successfully fooled you. If a woman lied and there didn't happen to be any physical symptoms that would make you realise, how would you know?

I'm pregnant at the moment and had a phone consultation with a midwife instead of a face to face when I was around 10 weeks. They were asking all sorts of questions, one being how much alcohol I would usually consume, how much alcohol I consumed while (unknowingly) pregnant. I don't remember being asked that with my first two children, but maybe I was.

When a baby is born a midwife or paediatrician does the New born infant physical examination. As part of this the mums notes are reviewed, the social history, smoking, alcohol, scans medical and family medical history are all looked at. The HCP undertaking the examination will take some of this information forward, for example if mum or dad are a smoker they will give extra information regarding SIDS and the risk associated, if mum or dad was born with a cardiac anomaly at birth they may do some BPs in baby or want an echo, with alcohol consumption they may pay extra attention to the facial features to look for signs of FAS. All the information gives a clinical picture, it’s not just taken to persecute the mother.

If we spent more time on public health and information explaining WHY we do things, it could give pregnant women more understanding and is less likely to cause this sort of thread.

@OpenlyGayExOlympicFencer no one “fools” me, if a woman does not want to disclose part or any of her medical history that is 100% her decision, she has the right to do that. However should some harm come to her baby as a consequence for that non disclosure she can not then refer back to the midwife.

Women are autonomous and have the right and power to make their own choices surrounding their care.

What @MagpieSong said.

• there’s no point asking pregnant women, those who have a drink problem lie. Adoption services already say that mums with drink problems pretend not to have drunk anything at all during pregnancy because they don’t want social services alarm bells.

• what would be helpful is for there to be awareness raising (advertising, GP leaflets etc) explaining that NO alcohol consumption during pregnancy is safe. At the moment even doctors tend to say “a glass or two won’t hurt” when the fact is that even a single glass can cause serious harm to the baby if drunk at the wrong stage of early pregnancy.

[quote Kidsaregrim]@OpenlyGayExOlympicFencer no one “fools” me, if a woman does not want to disclose part or any of her medical history that is 100% her decision, she has the right to do that. However should some harm come to her baby as a consequence for that non disclosure she can not then refer back to the midwife.

Women are autonomous and have the right and power to make their own choices surrounding their care.[/quote]
Ok kidsaregrim. Well whichever terminology is appropriate, and obviously I'll defer to you on this point, how can you assume most women are comfortable answering the question accurately to you and disclosing when you wouldn't necessarily have any way of knowing if you didn't?

I think it's an assumption that needs to be challenged, in order to ensure HCPs aren't being complacent around issues surrounding barriers to disclosure.

[quote Kidsaregrim]@PurplePansy05 I don’t force anyone to do anything, I ask a question and I take the answer whether that is “declined” “x units” or “0”

Part of my passion is empowering women, I have no problem telling a hesitant woman that they don’t have to answer a question, no they don’t have to have that vaginal examination and yes the CHOICE is theirs.

I’m sorry that you and so many others (including myself in one of my pregnancies) have come across midwives that are not focused on women and their choices.

So the antenatal handheld notes can be accessed by the child. For example if the child discovered aged 21 he/she has a condition caused from birth they could use the antenatal/birth notes to sue the trust for negligence[/quote]
Dinosauratemydaffodils previously wrote that her HV told a student about her rape. So it must have been in the child's notes.

If the child is going to be allowed access to those notes, then what about the right of the mother to privacy? What if she doesn't want her child to know about something like this?

There needs to be more discussion on what exactly goes into the child's notes.

I am actually shocked with regard to full accessibility of pregnancy notes - with my history of baby loss which no doubt will constitute part of these notes, I don't want my children in the future (hopefully 🙏) to access this part of them without my prior consent. I want to talk to them if and when it feels right for ME. Why are we not asked fo prior consent? This is clearly a much wider issue than the one originally raised.

The rape disclosure is absolutely horrific, this should have never happened.

Surely it's about the structure of pregnancy notes, not all information included is relevant to the child and as such should not be available to them or put on their record. Only limited parts are relevant and should go on their record, with regard to the rest, this is our private information and our patient confidentiality shall prevail.

I am still waiting for a justification for putting on a child's record that the mother had a glass of bubbly at Christmas. Or any other unnecessary information, for that matter.

It's not impossible to imagine an abusive relationship with a child (or ex-partner with access to the child's records) where they attempt legal action against a mother who drank something during pregnancy, claiming it caused them some kind of problem.

@Abraid2

It's not impossible to imagine an abusive relationship with a child (or ex-partner with access to the child's records) where they attempt legal action against a mother who drank something during pregnancy, claiming it caused them some kind of problem.

It's already happened. Back in 2014 a local authority caring for a child with FAS tried to prosecute the child's mother for drinking heavily during pregnancy. One assumes they were looking to pay for the child's care costs from the compensation scheme for victims of crime. The court ruled against them.

www.bbc.co.uk/news/uk-30327893

YANBU, I drank a few glasses of wine during pregnancy. But if I was asked & it was going on my child’s medical record I’d lie and say none!

Not that I’ll have any problems telling my child when they’re older, but I do think it would open myself up for judgement by putting it on paper!

(It was like 3 glasses through out the 9 months FYI)

If I’m not willing to admit no way is someone drinking a lot going in to admit it!

Alcohol is much more damaging than cigarettes and drugs during pregnancy. Sadly it also seems to be really random in that some heavy drinkers children don’t get any symptoms of fas and some moderate drinkers children suffer from it. Fas is a massive problem, I think more people have it than autism and other disorders put together so the push is probably from pressure groups trying to reduce the occurrence. They will need to balance the risk of mothers privacy compared with babies lifelong health.

If the child is going to be allowed access to those notes, then what about the right of the mother to privacy? What if she doesn't want her child to know about something like this?

I hadn't actually considered them requesting and reading their notes themselves. I absolutely do not want them knowing what happened to me/the aftermath.

I will be discussing exactly their notes say regarding my personal history with the health visitor.

@SoCrimeaRiver

I was so annoyed when I read this. There's already a host of issues when a woman is pregnant about the unborn, as yet non-existent, baby getting priority over the patient, who is an adult female. "You want what's best for the baby, don't you?" Not at the expense of an induction / hospital birth / Cesaerean I don't want, no etc.

This is simply a further slippery slope. Women's medical notes are private. Are women's use of anti-depressants recorded on their children's note? Prior conditions such as diabetes? It is outrageous to suggest that this is appropriate. I can't believe that levels of FAS are at such heights that this sort of gross invasion of privacy is warranted.

All this, as I said further up just seems like another extension of treating pregnant women like naughty children rather than competent adults.

Re the midwife saying care is delivered around evidence based practice and informed consent I really don’t think that’s the standard experience for women sadly. Many things that are said to be ‘offered’ in clinical guidelines aren’t presented to women as a choice- ‘you’ll need to be booked in for an induction once you’re 12 days overdue’ ‘we’ll be monitoring you throughout your labour’ ‘just hop on the bed so I can examine you’ and so on.

@PrivateD00r yes, we were also told the defect was idiopathic, it's just the surgeon seemed to be strongly implying alcohol could be a factor. He was talking about the possibility that my DS will blame me when he's older. I literally had two glasses of wine in 10 months. And it was the way he then peered at my 3rd baby's face, maybe I read too much into it.
You're right though, I'm often surprised when friends seem to think regular drinking throughout is OK. I was already v nervous about the two glasses and in my 3rd pregnancy was a total wreck!! But I hate the judgement, I'm living my own life and occasionally end up hosting someone else's, which I take seriously, yes, but mistakes do happen.

Indeed.

HOWEVER as I understand it, there's of course little data of this nature and what seems to be the case is that women who drank just a tiny bit can have children with strong FAS impacts and some women drink quite a bit yet have perfectly healthy children.

Are there any studies which support thIs statement?

Why isn't my generation of people badly affected by FAS? I'm 56. My mother drank a small but regular amount of alcohol during her pregnancy with me. So did my husband's mother. Neither of us or our siblings seem to have any symptoms. Unless symptoms are very wide and can be very mild.

I've already drilled assertiveness and consent into my kids when it comes to everywhere in life but especially when, sadly the female, dealing with the medical establishment. My teenager has already had LARC pushed on her even though she was not there for anything related to that and is not sexually active - it's presumed all young people are lying, she was even told to get it 'in case you're raped' so she knew that 'No,' is the only response you need to give. You don't need to give reasons or engage. 'I said no.' Why? Because I said no. I don't owe you anymore than that and you do not have my consent. Even if you are sexually active, you don't have to give your consent for even a discussion of contraception if you do not want to. Ever.

I've seen women treated better by the criminal justice system than by some HCPs. That's fucking shocking.

@BitOfFun, the majority of studies suggest that heavy alcohol intake is much more likely to cause full FAS and the majority of cases are children of women who binge drink or use large amounts of alcohol. (See: www.ncbi.nlm.nih.gov/pmc/articles/PMC6303602/)

However, other factors including genetic predisposition, the timing of the alcohol drunk within pregnancy, maternal liver health/ability to metabolise alcohol and variation in brain vulnerability all play a part. (See: pubs.niaaa.nih.gov/publications/arh25-3/168-174.htm -- for most of this.) It is much more likely someone drinking heavily will have a child affected, yet some people have presented drunk or admitted they drunk a large amount and not had the full blown effects in their child. Others report lesser drinking and do not present drunk, but do have children with the full blown syndrome. It does back this up in reliable sources (books, medical centres or websites focusing on supportng those with FAS/FASD), however there is obviously a grey area where someone's 'couple of glasses a wine' may have been more and someone else's heavy drinking may have been a number of glasses of wine. The strongest links are with those who use heavily, but those who drink less often/smaller amounts can have children affected on the Spectrum as the other factors can come into play.

There's also evidence around women who are in a social circle with those who drink in pregnancy being more likely to drink in pregnancy/seeing less harm in doing so; children with FAS/FASD being misdiagnosed and maternal nutrition being an important factor (further studies being called for on this, but low nutrients already in mother with fewer reaching foetus due to malnourishment and furthered by alcohol intake creating further risk, this supports why it takes far less for some babies to be affected as nutrient level of child may already be lower and pushed lower still by alcohol). There is lots of research out there, but lots more needs to be done. It is a relatively newly discovered syndrome (1973) and often studies need to be done over long periods of time to witness the way maternal alcohol intake has affected a child. For some, diagnosis doesn't happen until teenage years (if ever) and no symptoms appear until around age 6-8 or later. So it's a complex problem where a couple of glasses of wine during pregnancy could cause problems where a mother who doesn't metabolism alcohol well was malnourished and drank alcohol during a particular period of pregnancy and had a genetic predisposition to affect could well end up with a child affected by alcohol.

Hope this makes sense. I think that's what the statement of the pp meant, that despite limited data there is an acknowledgement of a huge range that isn't completely amount dependent.

No one is MADE to do anything, but we would not be responsible healthcare professionals if we did not give the risks

Asking and offering advice/risk information is completely appropriate. I remember this at my booking in a year ago and I expected it, just like at any other initial health appointment.

Recording the mother's alcohol use on the child's health record is really intrusive though and will not encourage engagement or an honest answer, which would be far more helpful to HCPs in reducing harm than an intervention like this.