Stillbirth Is Still Birth

As the fog has started to clear, Andy and I have been sharing the story of the past week with everyone. We’ve done little else. It’s been one long open conversation with each other and with our friends and family. Talking and napping, waking up in the night and talking some more, then more sleeping, talking, sleeping, talking, sleeping, as we’ve soaked up the whole experience.

There’s a teeny little voice that’s popped up in my mind every so often that goes something like, “Stop talking about it. Other people don’t want to hear this. Loads of people go through what you’ve been through and worse and they’re not going on about it like you are…” But whenever we share frankly and deeply with each other and with our friends and family about what we’ve been through over the past week, the lies in that voice are exposed.

People want to hear it. They want to understand and they want to offer love and support. And a bunch of people have thanked us, saying that they’ve had a similar experience of losing a child and felt deeply affirmed hearing us speak so openly about our experience because they never felt they had the permission to speak so openly about their experience. Talking about it seems to amplify our connection with other people and we’re seeing parts of other people’s hearts that we’ve never seen before – and it’s beautiful to see and experience. It’s also been enormously liberating and affirming for us to talk about it and to realize that the people around us are seeing, hearing and understanding what we’ve been through – both the sadness and the preciousness of the whole experience.

So this post, like the last few, is quite different to what I usually write about at Agile Living, but you’ve sent so much love, healing energy and prayers – and it’s meant so much to us – so we wanted to share our story with you too.

We’ve found that, while the truth is often painful and not what you want to see or hear, it’s always liberating when you embrace it fully. And I’ve been struck by both how common miscarriage and stillbirth are and also how the fear, sadness and trauma of the whole experience is compounded by the fact that many people aren’t given the information to make their own choices and have some sense of ownership of the process, and the fact that many people feel they don’t have permission to talk about and openly grieve and treasure their experience afterwards.

So what follows is a frank account of our experience of the death and birth of our baby. It’s our experience, and I’m sure that everybody’s experience of this kind of loss is different, so please know that we’re not standing in judgment of anyone else who’s had a different experience. I hope it’s as helpful for you that we share this as it is for us.

As you know, a few weeks ago we were told that my lab tests showed that my kidneys were not faring well with the pregnancy and there was significant concern that continuing with the pregnancy would result in renal failure for me. I didn’t really take it on board at the time, but there was also significant concern that I might be developing pre-eclampsia, which has the same symptoms as my kidney condition, making it tricky to diagnose. Pre-eclampsia quickly develops into eclampsia, a very serious condition that leads to seizures, multiorgan failure, cognitive dysfunction and coma. I could appreciate on a logical level that this was a conflict of interests but with the only other option being to choose to end our baby’s life, I can see now that I wasn’t open to appreciating the risks to my health.

On Tuesday last week we met with our gynae in preparation for the detailed scan we’d be having the next morning. We were there about an hour and all the scary “what ifs” were put out on the table. Tough conversations – the doctor answered all our questions as best she could, prefacing most of her answers with, “I’m sure this is not something you want to hear, but…”

After discussing it all, I took a deep breath, acknowledged the scariness and hardness of it all and reminded myself of the “hunch” I had a few months back that, “It’ll be scary, but we’ll be okay.” And I felt more resolute than ever that I was all-in, all the way for our little Juggernaut.

Andy had never heard her heartbeat live – just the one I’d recorded for him a few weeks back, so I excitedly hopped onto the bed for the doctor to give us a listen with the doppler machine.

And there was nothing.

The doctor wheeled in a mini scan machine and looked for a visual on the heart. Nothing. She told us she was 90% sure our baby had passed away, and offered to get us a more thorough scan. I think I was so used to talking about scary worst-case scenarios and hearing hard news by this stage that I just filed it in the ever-growing, “Sounds-scary-but-it-probably-isn’t-as-bad-as-the-doctors-make-out-and-we’ll-be-fine…” drawer in my mind.

So we trundled off to the radiologist. It was past 5pm and a kind radiologist had stayed behind to do the scan for us after everyone else had gone home. He had a look around and confirmed, and we saw for ourselves … there was no heartbeat.

I’ve never felt so alone, shocked and empty. And numb. Just a dark, blank fog.

“So what happens next?” asked Andy. “I’m afraid I don’t know. You’ll have to consult with your gynae in the morning,” replied the radiologist.

So we went home with our emptiness and a growing fear of what the next few days would hold as the realization sunk in that not only did we have to deal with the emotional letting go of our baby, but somehow our baby would need to be physically released too. As we googled and called a doctor friend to try and find out what options we were likely to be given, I felt like I was more capable of dealing with the emotional letting go than the physical letting go.

That night we called our parents and told them the news and I cried properly for the first time as the reality sunk in. I felt really cheated, like an ultra-marathon runner who’s done all their training and feels ready for the long, hard run and then gets the flu and can’t run on the day. I had been feeling strong and clear and still had so much I was ready to give – through the pregnancy and through the ups and downs of our child’s life.

My heart broke again when Andy blurted to his mother, “Mom, I’m just so relieved that Cath is going to be okay,” and I started to realize that I hadn’t allowed myself to see how scared he’d been for my health. Or to fully recognize the seriousness of the risks.

I remember saying to my mother that the doctors must just knock me out for the next few days or weeks. I didn’t want to even know how they would remove the baby and I definitely didn’t want to be conscious through the process. So I can completely understand why many women opt for a D & E.

I don’t remember the decision-making process or what made me change my mind – this all happened in a fog of sadness and fear – but the next morning I chose instead to be induced and to deliver our baby rather than having a D & E. We were sent home to wait for a bed to become available at the hospital.

The next day we got a call in the morning to say a bed was available for us. We were given a private room with a dedicated nurse and at about 1pm I was given the first dose of induction medication. Andy had packed our laptops, videos, games, books and food and we settled down with a video to wait for the medication to take effect, not knowing how long it would take, what would happen, or how much pain would be involved.

Over the course of the next 8 or 9 hours, our nurses explained what we could expect to happen, and asked our preferences on everything from dinner to pain medication to seeing and holding our baby, and they answered all our questions. To distract ourselves from our fears and the increasing cramps in my abdomen, we watched movies and read the constant influx of emails, blog comments and text messages from friends and family.

By about 9pm the cramps were full contractions. The anesthetist arrived just in time to give me the epidural. (As an aside, it’s kind of ironic that the insertion of an epidural is so fucking painful when the whole purpose of the epidural is to avoid pain!). About an hour later we delivered our little Juggernaut. Andy was by my side the whole time, encouraging, coaching and calming me.

Prior to delivery, we’d both been unsure whether we wanted to see and hold her, but once she arrived, I was completely certain that I wanted to see and hold her and the fear of what she’d look like completely disappeared.

She was the most beautiful thing I’ve ever seen. A little girl, just 14cm long, weighing just less than 200g and fitting in the palm of my hand. Wide open, huge blue-grey eyes and the tiniest little hands and feet I’ve ever seen. I checked with the nurses afterwards whether they’d given me morphine (they hadn’t), because the sense of love and deep, deep peace I felt on seeing her was like nothing I’ve ever felt before and it stayed with me till the next day. I can still easily find it and feel it again now.

The medical staff left us to have what they lovingly called “family time” and Andy and I spent the next 3 or so hours with Juggernaut, feeling both the awe of the birthing experience and our little girl, and the deep sadness of our loss. Yes, we officially named her Juggernaut – it’s who she’d become and we’d never settled on any other name.

We cried buckets. We held her, touched her fragile body, soaked up her smell. We talked to her and told her about our hopes and dreams we’d had for her, and how much we loved her. We tried to jam 60 years of parenting into 3 hours.

It was completely unexpected, but we discovered that stillbirth is still birth. I heard Andy saying to someone on the phone the other day, “It was just like any other birth experience, except that the loud crying in the room was me.” It’s not the experience of parenting that we’d hoped for, but it’s still been a freakin’ awesome experience.

Because we’ve been so open about talking about our experience, we’ve had many people sharing with us their stories of enduring miscarriages and stillbirths, and we’ve been struck by how lucky we were to have had the medical staff we had and the friends and family we have. Many people we’ve talked to have had the trauma and pain of the loss of their child compounded by insensitive medical staff, inadequate information and resources, other people’s silence and avoidance of the topic, employers who pressurize families to return to work promptly afterwards without giving them the space to grieve and rest, cultural perspectives that make it a “woman’s problem” so that women go through the experience alone and their partners feel alienated and disempowered, and ignorant, blaming or unkind responses from the people around them. We’re both so grateful for our luckiness. It’s as if everything and everyone around us conspired to hold and carry us through this experience. We don’t have to work through layers of anger, loneliness or rejection. We just have the purity of the pain of the loss of our little girl and all the hopes and dreams we had for her.

We’re so grateful for the wise and kind medical staff who affirmed the preciousness of our experience and allowed us to feel like real parents – especially the nurse who was with us through the delivery. She was so calm and responsive throughout. She held our baby like she was beautiful and precious, she called us mom and dad, she called her “your little girl” and “your little Juggernaut” and she was completely comfortable with our pain and with all the stuff we had initially been too terrified to face. She wasn’t just doing a job – she seemed to want to be there and somehow created a calm, joyful space for us.

We’re so grateful for Shannon Bowen Smed, from the Scott Smed Foundation. In 2009, Shannon’s baby, Scott, passed away and she was motivated to help create a more positive experience for parents going through miscarriage and stillbirth than the experience they had. She raised funds to create private rooms at a few Calgary hospitals, including the Foothills Hospital where we delivered, so that families dealing with miscarriage and stillbirth could deliver in private and have the very special family time that we enjoyed with our little Juggernaut.

We’re so grateful for the support and understanding we’ve had from Andy’s company, ThoughtWorks. Without exception, he’s received love, support and generous space to be with me, to attend all our medical appointments and to grieve and rest. His office manager has gone way beyond her job description and helped us so much with accessing the right medical assistance, negotiating medical aid claims, and other practical and emotional support. They sent us huge bouquets of flowers from both the Calgary and London, UK offices and Andy’s had an endless stream of kind and beautiful messages from ThoughtWorkers all over the world – many of whom he’s never met before.

We’re so grateful for the love, regular contact, midnight phone calls when we were most scared and upset, practical support, home visits, cards, flowers, trophies (yes, one of our wonderful friends gifted us with a trophy to remind us to be proud of what we created and endured), and the openness and open-heartedness we’ve had from our family and friends in Calgary, Cape Town, Chicago and London. I’m so touched that my mother, who I know was terrified of what I might have to go through, faced her fears and sat and googled to find out what happens after a baby dies in utero. And I’m so grateful for the way that my family and Andy’s family have chatted often with each other and looked after each other in Cape Town through what we know has been a very upsetting time for them too.

We’re so grateful for the love and the hundreds of supportive messages we’ve gotten from you all through the blog, Facebook, Twitter and email. I know that your messages have been enormously comforting for our families as well – my mother says she’s scrolled through my Facebook wall and blog comments a good many times, soaking up the love being sent from all over the world. Thank you for that gift to our whole family.

We’ve had many cautions from medical professionals to watch out for grief-related depression and postnatal depression and offers for referrals to grief counselors. Honestly, I don’t think any formal grief counseling would come even close to the therapy and healing we’re getting from friends and family who’ve listened to us so generously and with total openness, love and acceptance.

I’m also incredibly grateful for some of the experiences I’ve personally had over the past 10 years and particularly over the past few months. It’s as if somehow I was given all the resources to deal with this.

Until about 18 months ago, almost all of my work was a form of grief counseling. In South Africa I worked mostly with people who were referred to me because of chronic depression. The causes of their depression was almost always loss or trauma as a result of abuse or violence. In the UK I worked in child protection and much of my work involved helping parents recover from past trauma so that they could begin to understand and meet their child’s needs, and helping children to heal from the pain of being removed from their birth or foster families and the grieving involved in beginning to understand and integrate their painful childhoods as a teenager.

I’ve thought and felt every one of the “textbook” grief responses in the past week. Having worked with so many other people in their grieving and having received the gifts of their experience and wisdom, I’ve been able to easily dissolve the thoughts and feelings that commonly get people stuck in the grieving process (like the little voice that says, “Don’t talk about it,” for example). I’ve thought about those women, families and children I worked with so much over the past week and I’m so grateful for their gifts of sharing their stories with me.

Working in the world of personal development, I’m surrounded by a huge group of wise, kind and intuitive therapists and change-workers. They’ve been so supportive and there are too many to name them all, but there are two change-workers I want to mention because I’m convinced that their work with me in the past few months played a big part in preparing us for this experience.

About 2 months ago, a very special and talented artist and change-worker, Gloria Tiede, spoke some beautiful gifts and resources into my life. I wrote about it here. She guided me to access my internal “all-is-well” place through a visualization exercise and then, based on my description of it, created a painting and a poem for me and selected a song, to represent it and help me to anchor my life to “all-is-well.”

As I wrote before, it was a wonderful experience at the time. But as I’ve reflected on this past week, I’ve been so grateful to notice how Gloria’s poem has become a reality for us in ways I could never have imagined. The words of her poem were:

“May my eyes bravely see the glow of warm beauty emanating from everything always.”

I’m still blown away by the unexpected sense of expansiveness, and the sensitivity to love and beauty that Andy and I are experiencing since our little Juggernaut passed away, and I’m convinced that Gloria’s work with me two months ago is part of the reason for this.

I’m also so grateful for our good friend, Jamie Smart, who guided me through a session a few weeks ago. I have to inject myself daily and I was finding that I’d get anxious and feel vulnerable and disempowered in the lead up to injecting and sometimes it would take me a few hours to re-center myself afterwards. I knew it was a mental thing rather than a problem of physical pain because the actual injection isn’t very painful, so I asked Jamie to help me create a more resourceful response.

Being the deep, holistic and intuitive change-worker that he is, he didn’t just do a quick NLP “phobia cure.” Instead, he helped me to access and anchor who I wanted to be and how I wanted to feel through the whole issue of our pregnancy and the concerns for my health, and to clear the internal conflicts and fears I was having about it all which I had connected to the syringes.

One of the powerful metaphors that came out of that session was that I wanted to be like cotton wool – able to be both soft and strong, and flexible and expansive – capable of easily “bouncing back” when compressed. Another metaphor that came out of the session was that I wanted to be like a kitten – lovable, and full of love and curiosity, wide-eyed and capable of seeing life completely – especially the stuff that is hard to look at or awesome but often passed over by most people. At the time I just wanted to get more comfortable with self-injecting, but clearly Jamie’s gift was way deeper and more enduring.

And then there’s Andy. My heart breaks for women all over the world who have gone through miscarriage and stillbirth alone or with a partner who hasn’t been capable of supporting them and doing it with them or has even blamed, rejected or abused them as a result. More than anything else, I’m so deeply appreciative of the healing that’s come from having the big-hearted, wise and strong man that Andy is right by my side every step of the way. In spite of all the scariness, he’s not shied away from one bit of it. His willingness to fully feel all of the sadness and all of the awe of this past week and to claim it for our own and share it with the world by telling everyone about our experience has helped me to fully feel it and claim it and share it too. I’ve always known I found a goodie – that’s why I made sure to marry him when I was just 20 years old. But what we’ve been through over the past few months is the kind of thing that really shows what you’re made of. I’m in awe of the heart and mind – the awesome husband and dad – that Andy is, and more in love with him than ever before.

I know that Andy and I will shed plenty more tears in the years to come. We miss our Juggernaut so much. Her preciousness and our heartbreak about losing her are both compounded by the fact that this was clearly our one shot at pregnancy because of my kidney condition.

But somehow there’s been more love than anything else. As our only child, we’ll remember and carry our little Juggernaut with us for the rest of our lives. We’ll treasure the card with her tiny little footprints on it, the photos we have of her, the memories of the months we spent growing her and the hours we spent holding her. And I’ll be printing out all of your messages to add to a scrapbook to remind us how much love there is in the world and how good people are.

Health-wise, I’m doing okay. I’ve had no pain and, other than sleeping a lot, I feel pretty normal. We won’t know what the extent of the permanent damage to my kidneys has been for a few months still – we need to let the effects of pregnancy wear off and then the lab tests will show more accurately where my kidneys are at. For now though, the lab results are starting to move in the right direction, so we’re hopeful that the damage has not been too bad.

As far as my work goes, I have a few clients I’ll be picking up with again, but otherwise I’m going to probably keep things on pause for the rest of the year. I know that I need to meander and pootle and explore for a while. I have huge curiosity about what we’ve been through and the different experiences of other people who go through miscarriage and stillbirth all around the world and I’m going to indulge that curiosity for a while, stay wide open to learning and loving and just see where life leads me work-wise. This experience has taught me to trust myself and to trust that I will have the experiences I’m meant to have – I don’t have to “make stuff happen.”

We’re planning to take a 3-week trip to Cape Town to be with family and close friends there as soon as my doctors give me the go-ahead to travel. Hopefully we’ll head over the first week of November.

I’ve received some really great guest posts that I’ll be posting here over the next while, so stick around for that. And as and when I feel I have something to write, I’ll do so as well. You’ll still find me on Twitter and Facebook too, so we’ll stay in touch, and let’s see where this takes us.

And again – thank you for all of your love, prayers and healing energy over the past while. It really has made all the difference for us.