Baby Loss

There have been some fantastic conversations taking place on the MatExp Facebook group, with a new ACTION thread every day to generate discussion. The aim of these discussions is to identify ways that we can ACT to improve maternity experiences. Big, long-term actions that might require system change or a change in culture. And small, immediate actions, that professionals and individuals can take today to improve the maternity experience of those around them.

One of the first topics we looked at was Anxiety, as it had been one of the first issues raised on the MatExp ABC.

“Anxiety” covers a number of areas when we look at maternity experience. Mothers can have existing problems with anxiety, that have already been identified. They could have had anxiety for some time but the experience of having a baby has intensified it (my experience). It could be that they begin to suffer with anxiety postnatally – Emma Jane Sasaru has written here of her experience of perinatal anxiety. Or perhaps their anxiety is focused on giving birth – many mothers are incredibly anxious about what the end of pregnancy has in store for them. Finally, there will be mothers who have experienced birth trauma or baby loss and this can understandably provide a background for anxiety in subsequent pregnancies.

Anxiety UK says of anxiety that it is “something that can persist whether or not the cause is clear to the sufferer”. The organisation lists the symptoms as

Anxiety UK Registered Charity Number (1113403) Established 1970

Certainly, on a personal note, “feeling detached from your environment and the people in it” goes some way to explaining why it took me such a long time to properly “fall in love” with my babies. There was no “rush of love” for me when I gave birth and first held my children, despite my having positive birth experiences both times. “Feeling like wanting to run away / escape from the situation” – many new mums feel like this at times when coping with a newborn baby but it is important to recognise when feeling like this “now and again” has accumulated into something more problematic.

So how can we ACT when anxiety is a factor in maternity experience? Let us first look at how women can help themselves:

Practice HYPNOBIRTHING – a number of people involved in the #MatExp campaign suggested this as a great way to alleviate anxiety in pregnancy and anxiety about birth itself. Pregnancy Coach Suzy Ashworth explains here what hypnobirthing is all about, and how it’s beneficial for all women regardless of the way they plan to give birth.
BE HONEST and try to explain your anxieties to your healthcare professionals. Find out as much as you can about anxiety and ways to manage it.
GET HELP.

Now these actions all assume that the woman in question is aware that she is struggling with anxiety. But this is certainly not always the case. This is where the birth professionals come in. How can they act when anxiety is a factor?

Understand how anxiety can manifest itself. If a women is finding it difficult to talk about something, if she is quiet and refusing to engage with a situation, if she practices avoidance by walking out on a conversation then think “anxiety”.
Give women the opportunity to talk openly about their fears, and really LISTEN.
Offering reassurance can be helpful but it can also be dismissive – being told “don’t worry, that won’t happen” can heighten a woman’s anxiety as she will feel as though her fears are not being taken seriously. Always remember that those fears are REAL to her, however bizarre they may seem to you

What services are available to women in your area who are struggling with anxiety? Are the following available (and do you know how to access them?) or do they need to be put in place?

Hypnobirthing, mindfulness and meditation classes
Cognitive Behavioural Therapy (CBT)
Specialist mental health midwifery teams
Training for midwives and health visitors on recognising anxiety

Where services are available, there are simple ways in which women’s access to them could be improved:

Please check on the mental health of the women you care for throughout their pregnancy and postnatal period, not just at their booking in appointment.
If you offer anxiety support, please make it possible for women to enquire about these services by email, not just by phone. Phone conversations are very difficult for many anxious people, and services only being accessible by initial phone assessment put up a real barrier.

When we look specifically at prenatal anxiety, there are changes to our birth culture that could make a big difference:

Empower women to trust their bodies. Too many women fear that they will not be able to give birth safely – how can we help them to understand how their body works and reacts in labour, and how it can be supported and encouraged to do its job?
Ensure that women understand that they have the control to make their own birth choices. Feeling as though they have no control is a huge factor for anxious people, but encouraging informed choice and putting women at the centre of their birth experience can help to alleviate this.

As with almost every discussion of maternity experience, continuity of care becomes an issue. Where women know their birth professionals and have built up a relationship with them, anxieties are reduced. Whilst continuity of carer is offered in places on the NHS this is far from the norm at this moment in time. If you struggle with anxiety then there are care options available to you to ensure that you have continuity in pregnancy and beyond:

Use an independent midwife. There is a cost involved in engaging the services of these professionals, but it is always worth speaking to them before dismissing the idea on the basis of cost, as there may be ways that the cost can be reduced.
Use a OnetoOne midwife. This is a “free at the point of delivery” service, but unfortunately it is only available in some areas. Find out if they are commissioned near you.
Use a doula. Doulas support women and their families during pregnancy, childbirth and early parenthood. This support is practical and emotional but non-medical in nature. Again, there is a cost involved, but there are ways that this can be reduced so it is worth contacting your nearest doulas to discuss the options open to you.

Lindsey Middlemiss (aka “Newbury Doula”) is having lots of discussions at the moment about the wider provision of doula support for women with high anxiety of at high risk of PND, including women who have experienced baby loss or who have had birth trauma. There is a possibility of some NHS funded pilots and research studies in the future, and the Doula UK Access Fund will likely be changing and expanding its criteria. We eagerly await developments in this regard.

#MatExp “Language” Champion Leigh Kendall has written extensively about support for bereaved parents and I know she will be suggesting further actions during #FlamingJune. Therefore I don’t want to focus too much here on anxiety in those who have experienced loss, but one thing did come out loud and clear from the discussions we had on Facebook:

There is currently no standard care pathway for those who are pregnant following the loss of their baby. They might be labelled “high risk” depending on whether baby loss was a result of pregnancy complications, but their emotional needs are not automatically met.

This is staggering to me.

This has to change.

On a positive note, one member of our community is aware of midwives at her local hospital looking into setting up Rainbow Antenatal Clinics specifically for those who are pregnant following loss. Is this something that you could look into at your hospital? Is this something you already offer?

Another positive that I would like to finish on is the new provision of antenatal appointments from our health visiting teams. Vanessa (aka Frustrated HV) had this to say on the subject, with specific reference to pregnancy following loss:

“I really do hope that the antenatal visiting programme being undertaken by health visitors & the increased communication between midwives & health visitors & GPs will mean that fewer women experience this neglect… Because it has to! A known history of loss in or around pregnancy should now automatically trigger (through midwife reporting) a Universal Plus antenatal health visiting service. Which would mean that you would have support throughout the pregnancy (as well as after) & signposting/referral to more specialist services if needed. No one should still be experiencing this type of trauma. You are correct that lots still needs to be done, but lines of communication are being created & general awareness is improving & I know that with the continued efforts of all the people I have seen in #MatExp & through all the conversations & wisdom shown, we will change things for the better.”

Join the conversation. #MatExp #FlamingJune

Share the Word About MatExp!

Being in a healthcare environment – whether that be a GP’s surgery or a hospital – can be a hugely disempowering experience. You are likely to feel especially disempowered when you receive bad news – your head spinning, struggling to take in usually complex information. Then, more than ever healthcare professionals of all disciplines need to reflect that each patient is an individual, with their own experiences, values, hopes and fears.

Professionals need to be able to listen effectively, which includes reflecting back what a patient has said to check their understanding, and to make sure they understand a patient’s views.

My son Hugo was born 16 weeks prematurely because I had the life-threatening pregnancy conditions HELLP syndrome and pre-eclampsia. My beautiful boy fought so hard, but died in my arms at the age of 35 days.

Everything possible was done to save Hugo’s life. Sadly, he was too small, and too premature.

There were, however, areas of both mine and Hugo’s care that could have been better. These issues were around communication – there were occasions where stresses could have been avoided if there had been better interaction between staff, or if we had been provided with more suitable written information.

I’m proud to be the #MatExp language champion. Effective language and communication underpins so much, and even a few thoughtless words can cause enduring hurt.

A huge thank you is owed to everyone who shared this post asking parents to get in touch about their own communication experiences around baby loss. An even greater debt of gratitude is owed to those who got in touch to share their experiences – good and bad.

It was interesting that the bad experiences reflected what I suspected – they are focused around failing to reflect that each patient is an individual, with their own hopes and dreams. The incidences of good communication are heartening.

I will take the poor first, so we can end on a positive note with the good.

One mother had a medical termination because her baby was diagnosed with a condition that meant they sadly would not live. I was appalled at what the mum had to say:

We were ushered in to see a male consultant. He obviously did not have adequate time to spend with us. Everything he said felt like one more thing he had to tick off his to do list. His comment: “at this point, I have to say that I’m sorry for your loss” was the least genuine and sympathetic expression I have ever heard in my life. He then followed this by referring to our baby, OUR BABY, as the “retained product of conception” and the loss of our baby, THE LOSS, as “the event”. He sickened me!

Another mum said:

…we had decided to have an amnio. We explained this to the Community Midwife (whose first words as we walked in was ‘oh this will be an easy appointment’….how little she knew!) Her response? ‘But how would you feel if you lost it and nothing was wrong’ said in a very judgemental way. As if we had not consider the risks…..I left the appointment gobsmacked she could be so insensitive and was so upset, I sobbed all the way home.

A woman who had a miscarriage said:

He then flippantly answered my questions in a nonsensical fashion. “It would hurt no more than a period” (I found labour easier, was offered pethidine for the pain all whilst being physically sick). “I wouldn’t need to stay the night” (ummm…I did…. “I wouldn’t bleed much” (not true). And my personal favourite: “no, you don’t need any medication now. Go home and just turn up at any point on Friday and we’ll deal with you.” (15 minutes later and in a taxi on our way home I noticed numerous missed calls. As we thought, I had needed to take the first of my tablets and was asked to return to the hospital as soon as possible.)

The two examples around my own experience include when discussing Hugo’s end of life, in my distress I cried how guilty I felt. The consultant said:

All mothers feel guilty.

That may be so – no mother of a premature baby, or a baby that dies for whatever reason is at fault. Knowing that does not diminish our sense of guilt, and that comment felt very dismissive. I wanted to talk about why I felt guilty, and be listened to.

The other example relates to a midwife from my local hospital phoning me the day after Hugo died. In a cheerful voice, she asked how I was. I replied that Hugo had died the previous evening. It was evident she had not heard me, because continuing in that cheerful voice she said “Oh ok, I understand you are at home now, would you like a visit?” Even if Hugo had not died, the tone and content of the call was inappropriate. Hugo would have been 29 weeks at that stage and while the unit that cared for him is excellent, there is no way he would have been home by that stage. It seemed to be a failure of checking the notes properly.

These are all examples of health care staff using jargon, and impersonal medical terminology. I am sure (and hope) these staff did not intend to be impersonal or insensitive. I am sure (and hope) these staff simply failed to put themselves in these women’s shoes, to consider how they were feeling at such a sad and difficult time, and to offer empathy. In the example of the midwife who phoned me, she needed to have used a different tone to the one she would commonly use with the happy events of mums at home with their healthy babies.

Effective communication is something I am passionate about, for the benefit of patients – I have worked in the profession within the NHS for several years.

Thankfully, we do have positive examples of communication to talk about.

The woman who had a miscarriage gave this emotional account:

The ward matron ushered us into her office and apologised profusely. She gave me my tablet and then offered to answer honestly any questions we had. We went over everything again but this time we received compassionate and truthful answers. “Yes, it would hurt lots but you will be offered pain relief”. “You will need to stay the night”. “It will be hard but we will be here to help you get through it”.

In the digital age, most of us will take to Google to explore our diagnosis and prognosis to find out more. Of course, while the internet has many useful, trustworthy sites, there are many that are complete rubbish (this is true of every condition, not just baby loss).

As one mum said about her baby’s diagnosis

Probably the worst thing I did was google the condition when I got home.

I found the same about HELLP syndrome – it is so rare, there is little information about it, and much of what I read was terrifying – not helpful to my emotional recovery.

Patients need to be guided towards trustworthy sites. I was heartened to read that as the result of the involvement of a bereaved mum, one hospital’s website has “information specifically about fetal abnormalities as well as details of the team of people who will be looking after them. When they leave the hospital after diagnosis they are given the website address and the number of a counsellor so they can look at it when the shock has worn off”. The website also has some links to recommended forums.

Happily, I do have examples of better communication of my own to share: consultants (both obstetric and neonatal) listening to me, and patiently answering my questions without patronising being an important one. Vitally, I have found the majority willing to listen to and take on board my feedback, and seek to reflect on their practice and make changes were appropriate.

That is heartening progress, for the benefit of other women during the heartbreaking time of losing a precious baby.

Language matters, always.

Share the Word About MatExp!

Time to Act on Anxiety

Baby Loss and Communication