Sharing Max's story one more time

A few months back I gave a talk to a group of midwives at the hospital where Max and Alice were born about my experience of losing Max in the hope of giving them insight into how they can improve their practices. They had invited SANDS along for this purpose, and SANDS invited me. I found it a really valuable experience and I got more out of it than I had expected. Sharing Max's story is one of the only ways I get to be his mum now that he is gone. And I also feel really passionately about making sure parents like us are looked after in the moment, when it really matters. 

For all of these reasons I agreed to do another talk, this time for graduate midwifery students at RMIT University. When I said I'd be happy to do it I had only been home with Alice for a week and may have been in a bit of a stupor. Perhaps I thought I could do anything now that I'd managed to bring my baby home with me. I have been feeling pretty invincible. June also seemed like a lifetime away back in the heady days of April and I very confidently thought I'd be on top of my game by then.

Then June came. And the day before I was due to give the talk arrived soon after. I hadn't written anything. I'd had an incredibly exhausting week. I really couldn't face it, even just logistically, but I had to go through with it by that stage. They wanted me to talk about my experience of a subsequent pregnancy after loss and the additional needs and support that I had or was given. In the end, much to the frustration of this here perfectionist, I ended up having to give a version of the talk I'd already given, just adding in bits here and there. I just ran out of time and so I was in a bit of a panic about delivering something that I was not happy with.

On the day, of course, everything that could go wrong did go wrong. The printer wouldn't print my speech at the last minute. Alice woke up crying and needed to be fed just as I needed to leave. My phone kept ringing. I couldn't find my USB stick with the Powerpoint presentation of photos I'd prepared. I arrived at the university to find I didn't have any change for the parking meter. I couldn't get the pram through the overgrown garden that was standing in between the car park and the building. They were all small things, and I'm all about not sweating the small things, but they combined to leave me feeling pretty highly strung and stressed out.

I fed and settled Alice as the lecture got off to a start and by the time it was my turn she was pretty quiet and happy. I got up at the front of the theatre and realised that this would be the first time Alice would hear about her big brother. I also become very consciously aware that whilst I was talking about one of my babies, my attention was this time very firmly on another - the one laying in her pram on the other side of the room. I was suddenly feeling very uncomfortable. I felt that by bringing Alice I would now be perceived like some kind of 'before' and 'after' shot. Here I was talking about my profound loss and sorrow whilst I knew Alice shone brightly as what some might perceive as happy ending to the story, mitigating Max's loss and my pain and grief. I felt that this perception would not only be an insult to Max, who was denied his chance at a happy ending, but also to Alice. She is not simply an end to her brother's story but the beginning of her own. The journey the two of us have shared is not the same journey on which I embarked with Max. I knew all this, but I thought that it would all be missed by people who probably wouldn't understand these complicated layers. I guess when it all boils down to it I didn't want those people to think that it's all OK now that I have a beautiful baby in my arms. Because it's not OK. It'll never be OK. I'm so grateful that Alice is here. But I'm still so devastated that Max is not. I just wanted to spell out, in case their was any confusion, that babies are not interchangeable like that. 

As it turns out, the students were a kind and receptive audience. There was only one person that made what I thought to be a very stupid comment about how women whose baby has died should be counselled in the benefits of having a natural delivery of that child and not so easily given a c-section. Maybe she's right, I don't know, but I thought it wasn't anybody's place to tell a woman in that situation how she should give birth and that she should damn-well get whatever kind of birth she wanted. As the benefits this student mentioned were mostly about how much more quickly she could then recover and go on to have another baby, I thought this was exactly an example of how most people just really don't get it and perhaps still think that getting a baby - any baby - is the only way to cure the hurt of losing one. But we don't want a baby. We want that baby. The one that was already ours, that we grew and nurtured and imagined a future for. I didn't know quite how to get that across. 

I survived my portion of the talk but it left me pretty shattered and emotionally drained. I really was not ready for all this. As much as I miss Max with all my heart each and every day, I need to look after myself and my energy and my heart because Alice needs, and deserves, everything I have to give right now. That became clear to me that day. I still fully support SANDS and the wonderful work they do, and I hope to be able to help in that same way some time in the future, but for now I need to look forward for a while, not back as I have done for so long. I feel like I need permission for that, for someone to tell me it's OK to do so, that it doesn't mean I am forgetting Max or 'getting over' what happened.

Here is the speech I gave, more or less. I did a bit more ad-libbing than I would have ordinarily, so there were a few more tangents and a bit less formality.

***

Everywhere I go right now, with this beautiful 8-week-old baby in tow, I'm greeted with big smiles, helping hands, and a question I dread.

Is this your first?

Once, I would have thought that was an innocent-enough enquiry. I've probably even asked it myself as a way of making conversation in a cafe or on a tram. But now it sends me into a spin. Because little Alice here is not my first. But I don't have another little one running around at home either. There was a long-awaited baby boy that came before, but he died. How do you slip that into an otherwise jovial conversation? No one wants to hear that reply, but if I nod and say 'yes, it is my first' to make it easier, it feels like my son gets even further away from me. Being the mother of a dead child is not easy, but having one foot in the land of the dead and one here so visibly with the living is proving no walk in the park either.

I share the story of my little son, Max, in the hope that I can teach others how to walk alongside the bereaved, particularly those, who like yourselves, will one day be in a position to be able to make a real difference in the immediate aftermath of such a nightmare. But, I guess, I also do it to keep Max present and real when so often he feels like a figment of my imagination. For I still can't believe that it happened to me. That my baby died. Every morning, a year and a half on, I wake up and am shocked to remember that all over again.

You may be sitting here thinking that the chance of you encountering a woman like me in your practice as midwives - one whose baby has died, or perhaps is about to, is unlikely. Babies don't just die for no reason, do they? In Australia. In 2013. With the magic of ultrasounds, state-of-the-art NICUs, and highly trained neonatologists? When I first got pregnant I certainly didn't think so. At least not once you passed the so-called 12 week 'safe' point, which I did with flying colours. But then, in an otherwise healthy pregnancy, I went into spontaneous preterm labour at 23 weeks and Max was born the same day weighing only 682 grams. Being one heartbreaking week away from what is considered to be the point of viability, the doctors did not rush Max away to resuscitate him but rather put him in our arms, where he belonged, until his heart stopped beating just six hours after his birth.

It is not at all my intention to punctuate your journey to becoming carers of women during the most vulnerable time of their lives with horror stories of when things go terribly wrong. As I was reassured time and time again during my recent pregnancy, the vast majority of pregnancies and births actually go delightfully right. But there's a chance you might one day meet a woman like me in the midst of a similar trauma on the worst day of her life. And she will need you. 

But the woman whose baby has died is not always so recognisable. You might meet her months or years later, during a subsequent pregnancy, in the birthing suite, or on the postnatal ward. This woman will also need you, for she likely relives the loss of her baby at the same time as she gratefully, joyfully welcomes the arrival of another.

During my pregnancy with Alice, where I was at increased risk of experiencing another preterm birth, I had the great fortune to be cared for by an outstanding team of doctors and midwives at the Royal Women's Hospital who understood how my experience of losing Max would profoundly affect my experience of pregnancy and birth the second time around. Reflecting on my care during Alice's pregnancy, as well as my experience in the hospital after I gave birth to Max, I'd like to share with you the things staff did or said that really helped - that really made a difference and that I'm so very grateful for. I hope you might think about them and remember them for a time in the future, when someone is relying on you to show them the way through the birth, and perhaps the death, of their baby. Most of the things that really made a difference to my experience weren't grand gestures, but rather to do with attitudes, demeanour, communication style. If I could sum up in just a few key words the best thing you can do to help a family who has lost a baby, I would say 'sensitivity', 'compassion', 'patience', 'guidance'.

The quiet confidence of the midwives who were with me when I delivered Max in 2011, for example, gave me a sense of safety when all else was spinning out of control. Proving that there's something in the old adage of 'fake it til you make it', I later found out that the amazingly competent and caring midwife who looked after me for the majority of my labour was just a graduate, almost as inexperienced as I was in the matters of life and death. But she seemed to know exactly what to say and when to say it. At only 23 weeks pregnant I was as unprepared for labour as you can get, and I was so scared. She would say 'now this is going to happen' or 'now it's going to feel like this' and it really did. She never lied to me, but she also didn't overwhelm me. Over those hours she gained my trust, and in doing so she helped me feel like I had some measure of control over a situation in which I had no control. She made me feel as if I was not alone, and that meant so much. Having the same midwife for the majority of the labour was really important. I don't remember her leaving my side. 

The midwives who cared for me sat with us after Max was born for what seemed like hours as we held him in our arms. They genuinely shared our sorrow and they expressed their regret and sadness openly. As hard as it must have been for them, they were willing to share themselves, and their hearts, in that room. Those two midwives were the only people on earth who met our Max aside from the two of us and it has given me great comfort to know his life had meaning for them, too - that we're not the only ones who will carry his memory. 

We were also fortunate to have a midwife who was a talented photographer. As she sat with us that lonely night she took some beautiful, tender photos of us all together. I can't begin to tell you how deeply those photos are treasured, though of course there could never be enough photos. Those images were the greatest gift we could have been given. The organisation Heartfelt, whose volunteer photographers go into hospitals to take photos of sick or dying babies, run information sessions and sometimes train hospital stuff in how to take thoughtful, sensitive photos. I encourage you to look them up as this is one really practical way of helping a grieving family create memories.

Encouraging parents to create memories of, and with, their babies, is so important. The mementos we were given, which are so valuable to us, are imprints of Max's footprints and the hospital ID tag he was wearing. We were given the sweetest outfit to dress him in. This helped to normalise our experience. At all times the doctors and nurses treated Max as tenderly as a live baby - always with great respect. My partner was offered to cut the umbilical cord when Max was born, something else that recognised our role as 'real' parents of a 'real' baby.

The midwives' gentle encouragement and guidance was very important to me. I was in shock and looking for someone to tell me what to do and how to be. I needed someone to tell me what was OK and what was 'normal' as I didn't know the answers to any of the questions I was asked, such as whether I wanted to see Max and hold him after he was born. Or rather, I thought I would want those things but I didn't know if that was OK. Without being pushy the midwife made it seem like those would be normal things to do and I really needed that reassurance and direction.

Recognise that parents will be in shock and perhaps unable to process information or respond to questions as well as they otherwise might. I needed things to be repeated a few times as I don't think I took a lot of what was said in, or I didn't realise its significance at the time. For example, the midwife asked me if I wanted to bath Max shortly after he was born and for some reason I said no at the time. I really wish someone had asked me again later on as I regret not having had that experience with him. Most bereaved parents I have met, even if they were initially fearful or reluctant to hold or bathe their baby, were very happy that they eventually did.

Sometimes I think that doctors and nurses need reminding that people outside the health professions just don't know a lot about death and dying these days, and that part of their role might be to guide and to educate. I wish someone - the midwife, the social worker, anyone - had explained to me what death was like. My son's was the first dead body I'd seen, let alone touched. I couldn't have articulated it then but I was scared and ignorant of what would happen to his dear little body after he died. I thought he would disintegrate before my eyes, go horribly stiff and rigid, or start leaking blood out of his mouth or nose, and I know now that this fear contributed to me wanting to leave the hospital before any of these horrible things started happening to my poor little boy. I wish someone had demystified this for me, as hard as those things would have been to talk about and to hear.

I think it's important to make sure that parents have enough support and resources to deal with the very scary question of 'what now?' before they leave to go home from the hospital, too. I wish they had made sure that I was really ready to go because in actual fact we just didn't know what to do except to go home. For example, it didn't occur to me that I would be allowed to invite family and friends in to meet Max even after he'd died. I also didn't think to change his clothes so I could keep something of what he had worn, what had touched his precious skin. It would be so helpful if you were familiar with some of the external organisations that can provide support or services to bereaved parents. Places like Sands and Sids and Kids. There are numerous others, too. There is a lot of literature out there about about how to create memories with your baby but it's too late to find out about these things after you've already gone home. This kind of support is time specific and you'll be there, in the room, able to provide this information when it really matters. 

If, as I mentioned earlier, you care for a woman during a subsequent pregnancy, one of the most important things you can do is to acknowledge the baby who came before. Like any parents, many of us cherish the opportunity to talk about our babies and to say their names out loud. If you can, take detailed notes of the story you are told, and try always to skim a person's file before you see them. I was fortunate to see the same midwife throughout my entire pregnancy, so I did not have to tell my story from scratch to a stranger time and time again, but others I know have encountered staff who have not bothered to read their file and therefore proceeded to ask insensitive questions at what is already a stressful, worrying time.

Perhaps one of the most special things that happened during my pregnancy with Alice is that the midwife who delivered Max, that young graduate, came to see me on the ward and to meet Max's little sister after she was born. It was an incredibly special, albeit emotional, moment. I was so happy that she wanted to share a moment of this joy with me, as she had shared the most intense moments of sorrow. I took some photos of her holding Alice and one day, in twenty years time, I will explain to Alice her significance. You could be the person a mother like me is still talking about twenty years on. I hope you are.

These are the things that count. It is the small kindnesses and moments of true empathy and compassion that you can make a difference, and you don't need years of experience or a masters degree under your belt to master those skills, just a willingness to accompany the woman you are caring for on her birth journey, no matter where that journey leads.