I was not at all experienced when I first cared for a family whose baby had died.

 I can remember crying my eyes out in the middle of labour ward because it was just too painful. Luckily, I had an amazing manager who gave me continuity with the family in question and I was able to follow them for 3 days worth of shifts. Their little boy had been stillborn after a complicated labour.

We sort of learnt from each other. I hope the woman didn't realise it was my first time coping with infant loss and honestly, it seemed she really appreciated the care. My best guess is she felt like she was in charge of her own care when she wanted to be, as I was so anxious to get it right for her.

But I'd like you to have some knowledge when you first enter this situation, so you don't feel lost. Most Universities are good at providing this education now - but insight from a bereaved parent is amazingly helpful.

Enter SuperHero Dad, Chris Binnie!

Chris' little boy Henry was stillborn at 38 weeks. Since then he and his partner have survived, which is amazing in itself, but he's also a trustee of 'Our Angels', a brilliant baby loss charity. 

I interviewed him here and his responses blew me away. 

 

He covers:

• Why as a student midwife you're well placed to give bereavement care and you probably have most of what you need already
• The films and blogs you can read to see things from a bereaved parent's point of view
• Why losing your child can sometimes mean you lose friends as well
• Why Dads get forgotten
• What care used to be like and how things are different now

 

 

What is your favourite (or what are your top 3 favourite) videos, books, blogs, or any other type of media on infant loss that you recommend to others?

There are so many fantastic resources out there now, both for bereaved parents themselves and for the professionals and students that support and care for them. Even when Henry died in 2014, there was relatively little out there.

Social media has been a huge driving force for change in providing support for bereaved parents and those that care for them, and some of the blogs that are out there are absolutely first class, often supplemented by excellent social media platforms.

My personal favourite  is The Legacy of Leo (Instagram, Facebook). My friend Jess has put together this amazing blog since the loss of her son Leo, and then built an entire legacy on the back of it – raising awareness, raising funds, providing support for parents, teaching others how to support us. She covers a huge range of topics – reduced movements, stillbirth prevention, better bereavement care, IVF, baby loss as a same-sex couple, the emotional challenges of another pregnancy following a loss, the list goes on and on.

She’s a warrior!

Other favourites of mine include:

Dear Orla, written by my friend Michelle, Orla’s mum, again covering a wide range of support and educational topics, as well as drawing on her professional experience as a clinical psychologist to teach more about post-natal depression, post traumatic stress disorder, and the other emotional and mental health challenges that are often hidden from friends and family. Warrior number two! (Instagram: dear_orla)

This is my Brave Face, by the lovely Amy Campbell, Charlotte and Esme’s mum, with specific focus on the enormous challenges of prematurity, the loss of a twin, raising a surviving sibling, and the strain of getting through a second pregnancy to full-term without the insight of having done so first time round, but with all of the fear. Warrior number three! (Instagram: this_is_my_brave_face)

Storm in a Tit Cup, by my inspirational friend Heidi, Ally’s mum. Heidi was diagnosed with a highly aggressive form of breast cancer while pregnant with Ally, delivered early, but then tragically lost Ally to an infection aged 8 days. Heidi’s very sweary (very honest) blog is empowering and inspiring both for parents who’ve lost a child and for families affected by cancer. Warrior number four!

My friend Hannah Pontillo’s blog following the relatively recent loss of her son Dexy is another powerful, hard-hitting, and enlightening resource, charting the first weeks and months following the loss of your child. We have also launched a blog series together entitled Dads Grieve Too to give a voice to fathers who are often forgotten in baby loss. Warrior number five! (Instagram: hannahpontillo and dadsgrievetoo)

There is a fantastic list of resources – both blogs and support networks – on the Our Missing Peace website. My blog, Pine Cones and Study Days, is here.

The websites and social media of MAMA Academy, Kicks Count, and Tommy’s are all incredibly useful.

I’d also highly recommend the series of videos we have produced from our student conferences at Our Angels, at Bradford in 2017 and York in 2018 – presentations by both parents and professionals to improve everyone’s understanding of the challenges surrounding baby loss.

They’re all available on YouTube here.

There are a number of places to turn for training days. I’d recommend starting with the charity Beyond Bea, set up by Steph Wild (who’s a qualified and practising midwife), following the loss of her daughter Bea at 23+4 in 2017. Her study days are available by contacting her through her website and are completely free of charge.

If you’d like to organise a conference rather than a study day like the Bradford and York ones that are linked above, please do get in touch.

If you could have a giant billboard out there that everyone would see, what message would it have on it?

I wish I could condense the messages we need to communicate about baby loss into a single billboard poster!

I’d want a billboard addressing the old wives’ tales – things like ‘baby slows down when getting ready to be born’, ‘less room to move later on in pregnancy’, etc, and

highlighting the importance of getting checked out if your baby’s movements change.

I’d also want a billboard dealing with the fact that so many bereaved parents lose friends and family largely because they simply don’t know how to support them, so they hide and run away from it instead. I’d want people to know that you don’t ‘remind’ us that our babies died when you mention them, you remind us that you acknowledge that they lived, and that’s an amazing gift. The days of being frightfully British and ‘not talking about’ this sort of thing, encouraging families to ‘move on’ or ‘get over it’, are long gone. The time for the silence has shifted.

I’d probably want my billboard to shout:

“Our babies may have been still born, but they were STILL born. #saytheirnames”

In that unspeakable period of shock and grief just after a child dies – is there something someone did or bought for you which made things even a tiny bit more bearable? Food, vouchers, silly films, etc?

I’ve heard a number of bereaved parents talk about things like friends or family turning up with meals. I don’t recall anyone doing that for us but it’s a great idea – turn up with a meal, don’t fret about when you’ll get the dish back, because if you’re the friend that turns up with a meal at a time like this, we’ll be keeping you forever.

For me as a parent, what stands out is the people who checked in on us. Even just a text saying “Just wanted to say I’m thinking of you both”.

What also stands out is the people who DIDN’T. Some of whom later tried to explain it away as “I didn’t know what to say, I didn’t want to make it worse.”

Here’s a tip – anything you say will not be WORSE than our child dying. Yes, there are some bad things to say: don’t try and sugar-coat the situation, don’t try to lift us up with some positive affirmation like “everything happens for a reason” or “at least…”, don’t project your religion or world-view onto us, don’t compare notes (“I know how you feel, my grandma/dad/uncle/cousin/dog/cat/goldfish died”), or “you can always have another child”. Definitely don’t say what my mother said about ten months after Henry died – “there comes a time when you just have to get over it and move on.”

Bereaved parents will not move ON from the loss of their child. They will over time learn to move forward, but they’ll never get OVER it.

If you’ve not heard of the documentary film ‘Still Loved’, look it up here.

There’s a bereaved dad featured in the film who says “they say everything happens for a reason, it doesn’t. It happens because it’s shit”.

It’s human nature, especially here in Britain, to try and put a positive spin on things to help someone move forward. Sometimes that doesn’t apply. This is absolutely one of those times.

(Have a read of these for more insight on the issue of language, a blog I wrote about it here, and another blog written about things not to say here.)

And as I reflect now, four years on, the thing that people did that I remember most as Henry’s father is when people asked me how I was doing. I spent months fielding the question “How is Briony coping?”, but I can count on the fingers of one hand the number of people (apart from other bereaved parents) who actually asked me how I was doing. Dads are often forgotten on this journey. My friend Hannah and I recently launched a series of guest posts on her blog (mum blogs get more attention) called Dads Grieve Too, to give dads a platform to talk about their losses and the emotions that affected them as fathers who lost their child too, not just supportive partners of mums who lost their child.

I wrote the first in the series, you can find it here.

What would you most like student midwives and midwives to know about infant loss?

I’m absolutely passionate about helping midwives and student midwives get more exposure to and understanding of this aspect of care. This is scary stuff for all concerned – parents, family members, friends, and caregivers. The death of a baby is horrific.

I honestly believe that to be able to provide the best possible care to parents and families in this situation, midwives and student midwives almost need to embrace the fact that this is horrific – to recognise that you can’t actually make it better, you can’t take the pain away. My friend Michelle is a bereavement midwife and she says this is hard for midwives because, like many who work in healthcare, your default setting is to be a fixer, to make something better. You can’t fix this though. Don’t set timescales or expectations. Every family and every parent’s journey of grief is different. There’s no set cycle of grief for this – no matter what the textbooks tell you.

All you can do is provide considerate, compassionate care and offer choices wherever possible, which is vital in giving those parents back a sense of control when they feel like all control is lost. Even small choices like whether they want photographs or to do their child’s hand and footprints themselves, or to choose a blanket or outfit, all of these things are critical, both for helping them make memories and also for allowing them to take some tiny semblance of control of a situation which has inevitably sent them into a flat spin. Facilitate these choices, talk about their baby to them, use the baby’s name if they have given one.

I think it’s really important to recognise that while almost every midwife or student I’ve met (and I’ve met thousands now) feels this is one of, if not the hardest aspects of midwifery care, in some ways I think it’s the simplest. Yes, it’s the death of a baby, which is really hard, emotionally, on everyone involved.

BUT if you, like most of the midwives or students I’ve met, joined your profession because you’re a compassionate human being and you wanted to be part of the joy of bringing babies into the world, don’t forget that a stillbirth is STILL A BIRTH. This is still a birth experience, and (despite the devastation) in most situations there will still be massive amounts of love for the child these parents are meeting for the first time.

You can mitigate the pain, and you can enhance the love – and actually, this (to my mind) can become one of the simplest aspects of midwifery for that exact reason – most, if not all, of the clinical aspects of care largely go out of the window, so when you strip it right back, bereavement care is simply about being a kind, compassionate, human being, you know? And to my mind that’s a default position for someone who wants to be a midwife anyway. Just be kind.

What’s poor advice you hear given to students or midwives about infant loss?

I get infuriated by hearing of students who are kept away from bereavement care situations, because “it’s just your first year”, or “you need x, y, z for your portfolio”, or my personal bugbear “it’s not appropriate for students to be involved”. It absolutely IS appropriate for students to be involved – how else can you hope to provide the right support as a newly-qualified midwife if you have been sheltered from bereavement care as a student?

Many bereaved parents actually say that the best care they received came from a student – because students (theoretically at least) are supernumerary, if the circumstances allow, they can just support a bereaved family for an entire shift without being dragged away for other commitments. I think it ties in with the above though, strip it back and just be kind.

I also still get infuriated hearing misconceptions being maintained – “have a cold drink”, “have a hot drink”, “lie on your left hand side”, “call back in a couple of hours”, etc. I think it’s vital that students and midwives stay up to date and fully abreast of current best practice. There’s so much attention on reduced fetal movements now, and yet I still hear of parents who called their labour ward and were given some of this incorrect advice and subsequently lost their child, and in this day and age that’s just utterly unacceptable.

There’s been a real generational shift in understanding of what’s right for bereaved parents. Gone are the days when maternity and associated health professionals told parents that they shouldn’t see, hold, name, or bond with their child. Gone are the days when parents were told by professionals to just get pregnant again and forget about the child they lost. All of these things and these attitudes created generation after generation of parents silenced and isolated by their grief. Thankfully, poor care is now largely the exception rather than the norm.

Just ask yourself how you would want to be cared for were you in that situation – not the specifics, just the attitude – and do that. Bereaved parents are still parents, and stillborn babies were just that. STILL born.

We all get scared of this kind of care sometimes. The grief these parents feel is about as intense as anything a human can experience.

But that's also the privilege, right? What you do will stay with them forever.

Now we'd love to hear from you! Leave Chris and I a message letting us know what your most important piece of learning was from this post.

You never know, someone might read your comment and bring that insight into care when it really counts.

Huge thanks to Chris for this.

Take care, Ellie.