A baby dies; how do we mourn? The Talk

This post is the write up of the talk by the same title that I gave at Greenbelt 2012.

This is not exactly what I said, since I never write out my talks; instead it is a combination of my notes, what I remember from the talk and my thoughts which stem from the questions and conversations following the talk. The talk was a catalyst for discussion on the day, as well as since then; I hope this post will also encourage discussion about how we can help families mourn.

Introduction
My name is Emma Major. I am a Licensed Lay Minister in the Church of England; a serial volunteer in local charities; a blogger at LLM Calling
and a mum to Rachel. I am also a mum to four babies who died before they were born. My babies died.

Definition of Miscarriage
One in five pregnancies ends in miscarriage. One in five. That basically means that, on average, one in every five women you see in this room, around Greenbelt, at church, at work, at the school gate and at the supermarket has had a miscarriage.

So what does the word miscarriage mean?
The official definition is "the spontaneous loss of a foetus before 24 weeks gestation".

I could not despise this definition more if I tried. Here are some words I have a major problem with.
Spontaneous - not in my experience.
Loss - I didn't loose or misplace by baby!
Foetus - MY BABY!!!
Gestation - what's wrong with using the word pregnancy?

So how would I define miscarriage?
I always say: "my baby died before they were born".
It's accurate, it's clear, it's concise and it reflects the truth in my life. My baby died; in fact four of my five babies died.

My Story
My story is similar to hundreds of thousands of women across the generations around the world. It is similar, but that doesn't make it any less painful.

We didn't fall pregnant easily, it took years of investigations and treatments and general horribleness before we were pregnant with our first child. We couldn't believe that we were pregnant at last and we were in even more shock when we were told at the early scan that our baby had died. I can barely remember that time, it was a blur; what I do remember is thinking we just had to get pregnant again as soon as possible.

We were so lucky to have fallen pregnant again with the next set of treatment and this time we were more cautious, although still optimistic. This time we had a "missed miscarriage" which means our baby had died and we didn't even know about it until a scan a few weeks later. I felt so guilty for having let my baby die and then not even realising it had happened; it was heartbreaking. Our way of coping with this was the same as previously; we rushed back into treatment and trying to get pregnant again.

Kendi was conceived in Africa and I felt such hope and faith that he would be born; the pregnancy was different, our feelings were stronger and I just knew it would be OK. How wrong I was. Kendi also died; and this time I couldn't cope.

I got through the first few days and then I took to my bed and fell into a deep, dark depression.
What was it all about?
Why was I being punished?
Would I ever be a mum?
How could Mike stay with such a failure?
Why wasn't Mike grieving like me?
What was the point of anything?

I don't know how our marriage got through that period; we grieved so differently and it felt like we were on two separate worlds. Kendi is an African name for "loved one" and he was and is loved; I wanted him to be named. Mike went along with it for my sake. I kept his scan picture and the little bear I bought him close to me and I grieved; Mike ignored this. I gave up on hope and I grieved but I needed to talk. Mike needed not to. I wanted to be grieving with him but I felt so alone. I know now that he felt as if I was downgrading his grief because he did it his way. That time was a nightmare.

Eventually, several months later, I had the strength to decide we could try to get pregnant again. I won't ever forget the minute we found out we were pregnant or every second of that fourth pregnancy. It was a rollercoaster of joy and stress, rest and panic, excitement and nerves; I was an emotional wreck. Getting pregnant after the death of your baby is a new chapter in grief; it brings so many extra issues and it can bring more emotions out. I felt as if none of the maternity services understood how scared I was and didn't really care; it was a very lonely and scary process. But it was worth it; Rachel is now 7 and the light of our lives. We have a happy ending.... But The story however does not end there.

I suffered debilitating post natal depression after Rachel was born; I couldn't leave her and I really thought something awful would happen to her. I was grieving, or rather not grieving; and I really wasn't coping with all the emotions flying around. I loved her but I also loved her three brothers and I couldn't hold that all together in any way that made sense. Thanks to a wonderful GP, great friends and an amazing counsellor I worked through my grief over the next few years. In the middle of this we miraculously fell pregnant, but Leof also died. This time I was late in the second trimester and this time I experienced trying to explain to a toddler that her brother had died. In many ways Rachel's open and childlike acceptance of this news was healing for me. She speaks about her brothers and she doesn't shy away from the subject; she shows me how to help others.

I never had a funeral for my babies; I didn't know I could and I had no idea who to ask. I needed to say goodbye and so I attended memorial services organised by the Miscarriage Association and eventually I had a small personal service of thanksgiving for my boys. It helped more than I can ever express.

My story is, of course, more than just this. It is peppered with amazing support amongst many horror stories of dismissal, lack of understanding and pain. It is a story which I lived through with God's healing hand on me. It is a story I wish to help other parents walk through as easily as they can. It is a story which I hope helps others understand a little bit more what it's like to have your baby die before birth.

Grief
Grief is not an event, it is not defined by time or set situations; grief is a process. Unfortunately grief is a little understood process; and as processes go it is far from straightforward.

Elizabeth Kubler-Ross was one of the early writers on bereavement; she defined the stages of grief as:
Shock
Denial
Bargaining
Depression
Acceptance

She, as all subsequent writers, was clear to explain that these stages do not occur in any set order; that you can move backwards and forward through them; and that you can get stuck in one stage of grief without realising it.

If you go back to my story with this grief model in mind I am sure you'll find quite a lot of denial at the start of our grief. Shock came and went at different times and I found that really hard to cope with. I bargained with myself all the time; trying to forgive myself or blame myself and convince myself to keep going. Depression sank over me like a heavy blanket; it would lift slightly at times but in one form or another was with me for about seven years with shock, bargaining and anger in the mix now and again. And acceptance? As much as you can ever accept that four of your long hoped for and much loved babies have died; I did eventually accept it and hence I now feel able to talk about it so openly.

Part of my healing was helping other families. Eight years ago I became a volunteer for the Miscarriage Association
taking calls from women who needed to talk. From this I trained as a counsellor specialising in bereavement. These activities and my continuing ministry to bereaved families has been part of my healing journey; it meant I could draw on my experience to help others and feel as if there was a positive result. It gives me a purpose through my devastation.

Grief takes time; it takes years to move through. I have met grandmothers whose grief for their baby who died many decades ago is as strong as it was then. Grief affects a wide circle of people around a family including the extended family and friends. These people might all need support.


What do bereaved families need?
1. Support one to one
Families need supporting through their grief; they need help as they journey through the process. Society finds this hard enough for anyone who is bereaved; and my experience of grief of an unborn child is that people don't think it follows the same process or needs as much support. Grieving families need normality with understanding; they need to have their down days understood as much as their positive ones. They need visits and they don't need anyone to cross the road or avoid them. They need friends, old and new, who aren't afraid to face grief.

2. Support - a place to talk
Friends and companions can be invaluable in the day to day support and normality; but many families want to speak to other families who've been through the same. They want to hear they're normal; they want to be allowed to cry without being judged; they want to laugh about the things which aren't funny but need laughing at. Local support groups exist around the country but there are never enough; more are needed. I run the Berkshire Babyloss Support Group which meets monthly in a comfortable room in our church hall; it is a safe place for families whose babies have died to come together and share what they wish. More are needed.

3. A way of saying goodbye
Families whose babies have died in early and mid pregnancy are not offered a funeral and are rarely aware of even the possibility of a memorial or a remembrance service (except where there are chaplains who provide this fantastic service). Families need a way of saying goodbye to their baby and this is missing. Babyloss awareness week comes around every October and there are services of remembrance held around the country; but these have dwindled in recent years. I have organised one at my church for the last two years and will continue to do so. And now a fantastic charitable organisation called Saying Goodbye
have organised services of remembrance in Cathedrals around the country, starting later this year. I am a champion of this amazing provision and am so excited about the way this will help bereaved families.

4. Support for the ongoing journey
When your baby dies you are left with a hole in your life; you are left with a mix of emotions from wanting to have another baby to not wanting to fill your baby's baby shaped hole. Families need support through the decisions whether to get pregnant again, future pregnancies, the arrival of subsequent babies or the decision to stop trying any more. It doesn't end when the immediate grief has ended.


How can we help as individuals?
- talk to friends and family members whose babies die; don't avoid them because you are afraid you'll say the wrong thing. You won't; not if it comes from a place of compassion.

- pray with and for bereaved families and for their babies. Prayer is a comfort and a healing ministry; let's use it.

- spread the word about miscarriage and support the many charities who support families and strive to make their medical care better

- be there, that's all; just be there


How can churches support families?
I call on churches to start being the beacon of hope for families whose babies have died. Bring them into your pastoral care system as you would anyone who asked for a funeral in your church. Provide prayer where needed, visit as required, support as much as possible.

I suggest that Intercessions include the mention of families bereaved through miscarriage; both as ongoing prayer and also as a way of informing communities that it is a real issue that the church cares about. In the seats there'll be parents, siblings, aunts, grandparents and friends who are all bereaved; let's help them.

I would like churches to liaise with their local GP surgeries and hospitals to offer pastoral support and memorial services for those families who would like it. Let's make it a standard offering, as we would a funeral.

I am writing a liturgy for a memorial service for babies who die before birth and I hope that this can become a standard offering within the Church of England. Saying goodbye is a part of grieving; a funeral or memorial service is a time to be able to say goodbye.

There are also the amazing Saying Goodbye
services around the country which I hope all churches will embrace and support as a regular way of helping families remember and mourn. It is important not just for families but for siblings, grandparents, aunties, uncles and friends. That community needs to grieve and to have a place to do that, to come together.

Churches can lead the way in the care and support of families of babies who have died before birth. I call on church ministers, leaders and members to raise the needs and find a way they can help people. The church can lead the way in this and help society change for the better in understanding the pain of the death of an unborn child.


A baby dies; how do we mourn?
I hope that this talk has helped you understand a little better how we mourn and how you can help.
Thank you.