Sharing my experience of neonatal death

Last Wednesday I was asked by Anne from SANDS to accompany her to a midwifery professional development day at The Women's to speak about my experience as a newly (well, fairly newly) bereaved mother. A group of midwives were participating in a whole-day series of seminars about perinatal loss and were keen to hear from someone who had been there - someone who might be able to talk about the things midwives did that helped and the things they might be able to do differently in the future.

I jumped at the opportunity to speak. I was so heartened that they were intent on finding ways to improve their practices for bereaved parents and that this was considered by the hospital to be a valuable pursuit. Of course I was also very glad of the opportunity to talk about Max and to be recognised as his mother, something which happens less and less the further away from his birth and death I get.

It was much harder than I anticipated to come up with things to say. Lately I've had trouble finding the words to express anything much. I've noticed myself becoming quite insular as this pregnancy progresses, my worries and fears too big and unwieldy to even attempt to give voice to. As a measure of protection for myself, I imagine, I've also found it hard to talk or write about Max or my experience without him. The memory of profound and searing pain seems too great to invoke when so much is at stake. I'm tiptoeing through the days trying to anaesthetise my brain so that it cannot go back and so that it cannot go forward. Both are scary places for me right now.

I was so proud of myself for being able to do this, though. It was for me another way I could give something back, or to create something valuable from Max's life. Though I was absolutely emotionally exhausted afterwards I was very glad I was there that day. My story was received with great respect and many of the midwives present were visibly moved by the description of my experience and by the few photos I showed of Max during his short life. I received quite a few sincere hugs afterwards and much genuine gratitude that I had been brave enough to share such a painful, intimate experience with yet another room of strangers.

Here is the talk I presented that day, in memory of Max, and in gratitude to the people who had helped him into the world, and who helped me afterwards.

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On 24th November last year I gave birth to a beautiful, perfect baby bay, Max. He was a long-awaited first baby, but he would not be mine to keep. With no warning, I went into spontaneous preterm labour at 23 weeks, and Max was born weighing only 682 grams. He died in his daddy's arms when his heart finally stopped beating almost six hours later. Though his life was brief, his impact on our lives was profound and ongoing. A year on, Max is still very real to me. Sometimes I can still feel his feather-weight in my arms.

When I arrived at this hospital that day with back pain and cramping I had no inkling of what was about to unfold. I was not prepared with support people or even a change of clothes. I shared the very worst day of my life with a room full of strangers - obstetricians, midwives, neonatologists. Though the shock meant that so much of what happened that day is a blur, I remember vividly the small things some of those strangers did to help and support me. The things I remember most weren't grand gestures, but they will stay with me forever.

At only 23 weeks pregnant I was very unprepared for labour. I hadn't attended any antenatal classes yet and I could never have been adequately prepared for the fact that I would have to go through that process with the knowledge that all the pain would be for nothing, that my baby would die. The midwife who looked after me for the majority of the labour seemed to know exactly what to say and when to say it. 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. She told me not to be scared and I trusted her. 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. 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 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.

Other 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 Max was treated 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.

Having spoken to other bereaved mothers over the last year, I feel very grateful for the compassionate care I received from all of the health professionals at the hospital, and for the protocols that enabled them to respond to our situation in such a careful manner. I was very sad to realise afterwards, though, that the reason the staff responded so well was because our baby was not the only one they'd seen die. It is absolutely heartbreaking to know that they'd done it all before, and have probably done it all since. Nevertheless, I was so grateful to benefit from that shared experience.

Of course over the past year I've also had a lot of time to think about the things I'd like to have happened differently, and while I have no specific complaints about experience, there are some things I have reflected on in hindsight that I'd like to highlight for, if God forbid, I had to go through this experience again.

I wish some of the questions I'd been asked were repeated a few times. As I was in shock, exhausted, and in a drugged haze, 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. I really wish someone had asked me again as I regret not having had that experience with him. I don't think I knew what I was saying or why I was saying it.

I wish someone 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 I regret feeling as if I had to go home and leave my baby the very next morning.

I wish someone had come to talk to me to discuss the very scary question of 'what now?' before we walked out of the hospital with empty arms. 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. When we left a new staff shift had just begun and a nurse I'd never seen before came to take Max away - the last time I ever saw him. No one told me exactly what would happen to my baby after we left the room and I didn't get to see where he'd be taken. Leaving him so abruptly was the most distressing moment of my life, far more distressing than the moment that I realised he had died. That I survived to tell you about it today still truly astonishes me.

I wish there were emergency packs of toiletries for women in my situation. After Max was born I just wanted to shower and wash my hair and clean my teeth, but no one could find me a toothbrush or a hairbrush. Those things sound silly now, but I'm sure they would have helped, if only momentarily.

Lastly, I wish I'd been told about some of the external organisations that could have offered their services to me whilst I was still in the hospital. Places like SIDS and Kids and SANDS have a lot of literature, especially about how to create memories with your baby while you still have the chance, 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 I wish the hospital had provided it to me earlier. Likewise, there are places like Bears of Hope that provide care packages for parents so they don't have to leave the hospital with empty arms like we did. I would also dearly loved to have known about Heartfelt, an organisation of volunteer photographers who could have come to take professional photos of our family while there was still time. We can't get those moments back so it is crucial for parents to know about these things straight away.

If I could end on perhaps what has been a very special moment I experienced from a wonderful member of your profession recently. At the moment I am 18 weeks pregnant with a little brother or sister for Max, which is a whole other anxious story. However my first hospital appointment with a midwife at 12 weeks, by stroke of fate, happened to be with one of the midwives who'd cared for me on the day Max was born. I can't tell you how much it meant to me that she remembered us, and because she'd seen us go through this experience she really understood the stress and fear that have consequently become a part of this pregnancy. I felt known and understood, and not having to tell my story from scratch to a stranger was about the best thing that's happened during my care for this pregnancy so far. She even offered, personally, to accompany me back to the birth suites where Max was born in the new year so that I can deal with some of the fear and trauma I might associate with the place before this baby is born.

These are the things that count. It is the small kindnesses and moments of true empathy and compassion that make a difference.

Thank you for making a difference to me; to dear little Max.

Returning

I hadn't anticipated that the very sight of the building where Max was born would having me trembling, unable to catch my breath, and wanting to run outside into oncoming traffic. Or maybe I had anticipated it but had been trying to block it out. I spent the whole day before that hospital's annual memorial service last Wednesday feeling anxious as hell. I wanted to be there and yet I desperately did not want to go. And I had a good experience at that hospital, receiving the best care, from the most compassionate, knowledgeable professionals. I can only imagine how difficult it would be returning to the scene of the so-called crime had it been associated with mistakes, distrust and betrayal. If that were the case I could picture myself wanting to burn it down. I'm not shocked by my violent fantasies anymore, for what else could I expect of my thoughts these days except to be consumed with shockingly unexpected acts of destruction and trauma? That neural pathway's been well worn now. I assume everything will take the same path I did - the one surrounded by wailing and emergencies and panic and ashes.

There is not much to say about the service itself except that trauma was relived, sorrow intensified, disbelief stripped bare, my wounds painfully ripped open again. I hadn't even realised I'd done any healing over the last nine months. But boy, I knew it when I realised all over again just how raw and bloody that wound could be again. Only nine months and I had already forgotten the sheer agony and anguish of those early days. I didn't recognise that my pain had become somewhat muted because it still hurts so bloody, indescribably much. I guess the difference is that it aches now; it has settled into a chronic pain that I have to learn to live with, where nine months ago, perhaps even six months ago, it was sharp and it burned, and everyone could visibly see that I was wounded. I think my pain threshold has increased dramatically to the point where sometimes I forget I ever lived without this ache; that just nine months ago I did not even have an inkling of the trial that would come to define me for the rest of my life.

It was a beautiful service, acknowledging the babies who died during 2011. There were many more than I expected. I thought around 20 or so, but Leslie said there were more than that. I was too busy waiting for Max's name to appear on the screen to pay too much attention to the names who came before or after his, although I did also try to say those names silently in my head to acknowledge that they were as real, and as loved, and as missed, as was my baby. Just two floors up, fortunate mothers were likely begging for epidurals because labour was more pain than they could bear. I remember when I thought that giving birth would be the most painful day of my life. If only I'd known how much more painful it could get.

I walked past the hospital florist, filled with happy balloons and teddy bears for excited visitors to purchase and foist upon all the new parents, and I was angry. What the fuck else do they need except their living, breathing baby? Now they want gift baskets and body lotion too? Our baby was born and had no visitors to the hospital. His birth was not celebrated, only mourned. Only one friend acknowledged his arrival, everyone else only acknowledging his death. Admittedly, we didn't invite anyone to the hospital, but to be honest, who would have wanted to come and hold our dead baby? That seemed like too much to ask. But I wish someone had. I wish someone had bought me a fucking ugly balloon and a cheap teddy bear so I could feel like all the other mothers, just for a second. So I could feel like a mother at all.

It was akin to torture to sit there quietly during the memorial and weep polite tears when everything inside of me was screaming out to get my baby's name off the big film screen where it sat alongside those of the dead babies. My instinct is still to believe, and to shout out that belief, that my baby can't possibly be dead. That it's all been a terrible mistake. I know in my head that I've lost him, but my heart can't, or won't follow. Max just still feels too real to me to be dead. He is so much a part of my thoughts, my heart, my daily life, even in death, that I still can't accept that he no longer exists in the flesh. Often it feels like I've just left him in another room. That I can go and pick him up and cuddle him any moment I choose.

To some these are the sensations of the mad, but I know that I am not mad. In fact I believe that I am now one of the sanest people I know, for I see everything as it truly is, uncovered by the layers of denial and ignorance most of us spend our lives building so we can better get through the day. I have no armour and no shields, but still a mighty battle to fight. No wonder I am so easily wounded. I have none of the 'normal' person's defences.

The other parents in the room were from all walks of life. Some who looked like us, young professional couples, some with older children, some for whom a dead baby was perhaps not even the cruelest blow life had dealt them.

And then there were the newborns.

Newborn, after newborn, after newborn baby, freshly minted and mewling in the dimmed light over daddy's shoulder, or in mummy's arms.

They were the rainbow babies that came after the fatal storm. I knew that. But it was like being held in a vat of boiling oil to sit there mourning my baby with the evidence of living, breathing babies all around me. I knew they had to be there, that they had every right to be there. I really did. But I still wanted them to be in another room. Any room. Just not the one I was in. Hearing the cry of a baby is still a sensation that I have no idea how to describe. It is a primal panic that overtakes me and I feel like I am going to explode, or worse, drop dead, if I don't get away from it, far, far away from it.

But, of course I just had to sit there as I'm a person loathe to make a scene, no matter the one I'm imagining making inside my head. I sucked it all in. I buried it all down in my chest until I could let it out in a safer space.

I lined up with all of those parents and their brand new babies and I lit a candle to remember Max and placed it in the bowl of sand. I pinned a yellow ribbon on the altar with his name on it. At the end of the service, so many coloured ribbons, with so many loved babies names on them, formed what they called a rainbow of hope. I wanted to collect all the ribbons for I sure as hell feel like I need all of the hope. I'd eat them, swallowing the rainbow whole, if I thought it would help.

There was a harpist, readings, songs, and acknowledgements. Amongst the parents were many of the hospital's staff, who had attended in their own time, which I found truly amazing. Included was the senior obstetrician who had cared for me when I went into the hospital that day with a few weird pains. To say it made a difference that she was there is the understatement of the century. She is one of the most amazing women I have ever met, not just in terms of her knowledge and expertise, and commitment to her job, but in the way she is able to empathise, really, truly empathise, with her patients.

She sat next to us for the entire service. More than that, she sat with us. And she remembered everything about us and about our little son; how perfect he was, how tragic was his death. Despite the fact that she's probably seen hundreds of patients since that day, she remembered. I could not have been more touched. I could not have been more thankful. I could have clung to her and insisted she take me home like a lost puppy, so deep is the sense of gratitude and trust I have for this woman who showed me kindness on the very worst day of my life. Yes, I really would jump off a cliff for her. I'm funny like that, intensely loyal in my obsessions with people and things. She is part of the story I can't share with almost anyone else. She knew Max, she saw him, she was devastated that he died.

She spent a good deal of time talking to me before and after the service. I didn't have to say much. She seemed to be reading from a woeful narrative that must have been written all over my face. She knew it all; the hopelessness, the feelings of failure, the guilt, the fear, the life of inertia I'm currently leading. She said she could help. She said she could make an appointment to see me and that we could discuss all of my concerns, all of my fears, about Max, or about the possibility of a new pregnancy. 'Let me do the worrying for you', she said. And I could have sunk into the ground at her feet with sheer relief that someone else wanted to help shoulder the pressure I have been struggling to carry. Someone wants to lighten my load. And I'll take it, I'll take anything she can give.

Leslie and I will see her October 2nd. She's even made the appointment at the beginning of the day so we don't have to sit in the waiting room with all the happily pregnant women. She said 'I hope you'll have some news for me by then', and I dared to hope for a second that I might. It was just a second, but the hope was there; someone believes we will get a second chance at parenthood.

I'll take a second of hope if that's all I can get. I'll take it and hold it close and try, try, try to re-ignite it when the light goes out.

Annual Memorial Service: An Invitation

I received a letter in the mail from the hospital where Max was born this week. They have a distinctive logo on all of their envelopes, and all my insides went to jelly when I saw it in the letter box. That pink logo used to represent good news; appointments, scans, hospital booking information, all of which I was regularly sent when Max was still alive and full of life's potential. This time I didn't know what they wanted. What could they possibly have to offer me now?

I was saddened, but also heartened, to find that it was an invitation to the hospital's annual memorial service to honour the babies who have died. I knew immediately that I wanted to go. I'm connected to that place, for better and for worse. I never want to go back there, and yet I want to go back there every day. It's where Max lived all of his life, and where I half expect to find him again in the nursery waiting for me.

I'd like to invite friends and family to the service, to remember Max, and all of the other babies who did not make it out of those hospital doors alive.

When: Wednesday 22 August 2012 at 6.15pm
Where: The Royal Women's Hospital, Conference Room A, Ground Level, Cnr Grattan St & Flemington Road, Parkville.

I need to RSVP to the hospital by next Friday 10th August, so please let me know if you would like to come. You would all be more than welcome to join with us. Please leave a comment below if you plan on coming, or email me with your RSVP: beginningofallthings@gmail.com

A letter to the Royal Women's Hospital Foundation

I've been on a letter writing campaign. In the early weeks after Max died I wrote many, many letters and cards of gratitude for the care and support we received, but then I kind of hit a wall with them, and I just didn't seem to have the energy anymore. There are still quite a few that I'd like to write and send, so I'm chipping away at them gradually. I'm posting them here so that I have a record of all the words I've sent out to the world in Max's name, which is so important to me.

This letter is to the Royal Women's Hospital Foundation, which supports the research and development arm of the hospital where Max was born. We raised a fair bit of money for them amongst our friends and families earlier this year, in Max's memory. I wanted to tell them why we did so. I wanted them to know that the research they enable makes a difference to people. I am attaching a photo of Max to the letter.

Here is the letter:

Dear Royal Women’s Hospital Foundation,

Recently we raised $5376 for your organisation through donations from ourselves, our families and our friends to an Everyday Hero fundraising page we set up. I wanted to share with you our gratitude for the life-saving research you do to help women and their babies, as well as the story behind why we chose your foundation as the recipient of our fundraising efforts.

Eight months and two days ago, on 24th November 2011, we had a beautiful baby boy at the Royal Women’s Hospital. We named him Maxwell (Max). He was the most perfect little baby you will ever have seen, but for some reason we don’t yet understand, we would not get to keep Max. He died only 6 hours after he was born due to the challenges he faced from being born extremely prematurely. Words cannot adequately describe the trauma, pain and sorrow we experienced on what should have been the happiest day of our lives - the day of our only child’s birth.

We say words cannot describe it, but we know that the people who work for your foundation must be able to imagine it, or else they wouldn’t work so tirelessly towards researching the potential causes of spontaneous preterm labour, such as I experienced that day, or towards its prevention or treatment. For that commitment we are grateful and so very humbled.

We would like to offer our heartfelt thanks to the Foundation and it’s researchers for the work you all do to make a difference to families like ours who have suffered the senseless loss of an otherwise perfect baby because we do not yet adequately understand the mechanisms that cause women to go into labour so early and unexpectedly.

The important work you enable does not stop with the researchers, however, but continues in the amazing care and compassion the amazing obstetricians and midwives at The Women’s provide. We have nothing but awe and praise for the care we experienced under very stressful, challenging circumstances. Thank you for everything you do to support and enhance their work, too. We can tell you, without doubt, that it truly does make a difference. It makes such a difference.

We will continue to support your research efforts in every way we can into the future, in honour of our darling son, who is so loved and so desperately missed.

With warmest wishes and the greatest respect,

Max's mum and dad.

Max makes his mark

This week the Royal Women's Hospital sent us their latest publication, Our Stories. We had signed up to their mailing list when we donated to our fundraising campaign, In Memory of Max.

The hospital will always have a special place in our hearts. It is where Max lived his entire life - where we met him, and where we had to leave him behind.

We were delighted, therefore, when we noticed at the back of the magazine a list of new financial supporters for the hospital's work. There were many people donating money for research and services that might benefit our family, and others like ours, in the future.

We were even more delighted to discover that a great number of the new donors were listed because they donated money to our fundraising campaign, because of their connection to our Max. To see the names of so many people we know in print, recognising their contribution in honour of our baby, was so wonderful.

RWH's newest supporters -
so many of them are family and friends of our Max

We looked at this list and realised that Max's influence is still so strongly with us, and in fact that this was just the beginning of things that he will inspire us, and those who love us, to accomplish in his memory.

Thank you, once again, to every one who has been able to help us raise what is now $5306.05!

Our baby might never have had the chance to figure out his purpose in life, as we are all so privileged to be able to do, but he had a purpose as real as anyone's. His daddy and I will work hard to make sure we can discover, and act upon it, for him. We only hope that he looks upon us proudly, and is able to know how fortunate we feel to have known him and to call ourselves his parents.

1 Million Kilo Challenge

As you can see from the clever widget I've put there on the left-hand side of the page, I am participating in Channel 10's 1 Million Kilo Challenge. I don't watch Channel 10 and nor do I have 1 million kilos to lose, but when I heard you could participate in it whilst raising funds for charity it struck me as something tangible I could do to honour Max. There's no way I'd survive a marathon run in his name. I watched Leslie come over the finish line in a half marathon and his nipples were bleeding, which scarred me forever. I also would not be any good at climbing a mountain or trekking through a jungle in order to raise money. I would not have the appropriate footwear, I whinge wholeheartedly upon receiving a single mosquito bite, and some poor bastard would get stuck carrying my bag as I collapsed under its weight.

Something I do know how to do, though, is count calories. I am the queen of imaginative diets. Ask Anika about my yet-to-be-patented 'Furry Friend' diet in which I ate only Furry Friends for about 3 months, yet still managed to lose a few kilos. Anika is about the only other fan of my creative eating ideas, having had quite a few herself over the years. She also saw me through the Sustagen diet - you guessed it, where you drink only Sustagen for as long as you can put up with it. And Kate has witnessed, though never condoned, the diet shake revolution. I've also been to Weight Watchers and done Lite n Easy, which was easy, but not tasty. Hence that did not last long. Weight Watchers was also short lived because everyone hated me there and I did not like the idea that you had to keep your shoes on when you weighed in. How have they got away with bypassing the most important rule of weight watching, which is to get rid of every conceivable weight-bearing item before you step on the scales?!

I know all of this sounds obscenely stupid as I am quite a slim person. But I'm a slim person trapped inside a fat person's mind. Some people label this kind of paradox as a 'syndrome' or a 'disorder' but I'm not as pathological about it as all that. I think I loathe myself just the usual amount, not a 'clinically significant' amount, so there's no need to worry.

Anyway, this is all just an aside. What is important is that losing weight and making myself healthier and stronger through exercise is something that I can commit to do for my son. I hope that this experience will help me to learn to appreciate my body more for the amazing things it is capable of; for everything it did to help Max grow big and strong. Despite how sick I was during my pregnancy, Max was in close to the 90th percentile for his gestation which means I must have been doing something right! I have also been very angry at my body, though, for failing him. I think it will take a long time for me to shake this feeling, and to trust my body again, but I want to try.

The other important side of this challenge is the opportunity to raise funds for charity. I did not hesitate to choose the Royal Women's Hospital as the recipient of my fundraising efforts as everyday I am reminded of the constant care, compassion and treatment Max and I were both given during our time there. We could not have been in better hands, medically speaking, and the staff who cared for us, both midwives and doctors, were also amazing people who I felt fortunate to meet.

My obstetrician, Dr Fiona Cullinane, set up the Preterm Labour Clinic at The Women's, and it is through this clinic that I would be managed for any future pregnancies. They have had wonderful successes in treating women with histories like mine and all in all, most women who are patients there will eventually get to take home a little baby to love and care for. Whilst it is promising that there are more and more treatment options, there is still so much that is not understood about what causes women to go into preterm labour and how they can prevent it. Researchers at the hospital are undertaking a number of projects whose findings will benefit me, and other women like me, in the future. You can read about those projects here.

I would be so grateful if you could sponsor me, no matter how tiny the amount, to help researchers turn these studies into tangible outcomes. I am already overwhelmed by the support I have received, and the number of people who have joined my team to achieve their own personal goals whilst helping out this cause. Max has touched so many people's lives and I am so happy to be able to do something good in his name. I hope he would be proud of his mummy and daddy. I am pledging to lose 5kg and Leslie is pledging 8kg. Wish us luck and send any helpful tips and tricks our way!

And most importantly, click on that widget at the top of the page and donate some money!

Thank you all!