October 15 is Pregnancy and Infant Loss Awareness Day, and this week we are sharing one new story and one favourite around this issue.

We take a look at Australia’s first perinatal mortality report, released earlier this week. And with the results showing stillbirth is on the increase, we revisit Dave and Ali’s story, whose daughter Harper was born stillborn ten years ago.

https://soundcloud.com/thinkhealth/encore-pregnancy-and-infant-loss-awareness-day-2016

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Speakers:
Amy Monk – Lecturer, Faculty of Health UTS and lead author of the AIHW perinatal mortality report
Ali & Dave – Parents of Harper

Producer: Ellen Leabeater

Listen to the full stillbirth episode with Ali and Dave

START OF TRANSCRIPT

Hi, welcome to Think Health. October 15 is Pregnancy and Infant Loss Awareness Day and today we are taking a look at Australia’s first study into perinatal mortality. We’re also going to be revisiting one of our stories from early this year about stillbirth.

The good news is Australia is one of the safest places to give birth with the overall perinatal mortality rate remaining fairly stable over the last 20 years. That’s the results of a new report by the Australian Institute of Health and Welfare looking at Australia’s perinatal mortality rates. Perinatal mortality is an umbrella term that encapsulates stillborn babies and babies that die within the first 4 weeks of life.

The bad news is that the stillbirth rate has increased between 1993 and 2012. Amy Monk is a lecturer at the University of Technology Sydney and was the lead author of the report.

Amy Monk:

Perinatal mortality basically covers the death of babies who are either born as stillbirths or babies that die in the first month of life. For both stillbirths and neonatal deaths, for them to be counted as stillbirths and neonatal deaths, they have to be born over 20 weeks gestation, so at 20 weeks gestation or over. For stillbirths, if they’re not born over 20 weeks gestations, they need to also be over 400 grams birth weight.

Ellen Leabeater:

What would cause a baby to die in the first month of life?

Amy Monk:

All sorts of things. It depends on when the baby is born at what gestation. Babies who were born generally, Ash, or before 24 weeks gestation. It’s very difficult to resuscitate and to keep those babies alive and well beyond that period of time.

The main causes of stillbirth and neonatal death in the report that came out recently from the Australian Institute of Health and Welfare were congenital abnormalities and that accounted for about a third of neonatal deaths and about a quarter of stillbirths.

Ellen Leabeater:

What are congenital abnormalities?

Amy Monk:

There are abnormalities like a chromosome abnormality or a problem that a baby’s born with it makes the baby unable to survive, so it might be a physical … They’re usually physical issues.

Ellen Leabeater:

This is the Australian Institute of Health and Welfare report that is just being released. How is Australia tracking on perinatal mortality?

Amy Monk:

Really well. It’s one of the safest countries in the world to give birth and even looking over the last 20 years, the trends in perinatal mortality have been fairly stable in Australia. We’ve seen a slight downwards trend in neonatal deaths and an upwards trend in stillbirth, which is interesting. On the whole, in relation to other countries, we’re pretty good.

Ellen Leabeater:

Why is there an increase in stillbirths?

Amy Monk:

It’s an interesting one. AHW reported that overall, over that 20-year period from ’93 to 2012, there was a 13% increase in stillbirths. It’s really unclear why there is that 13% increase in stillbirths. The report that AHW did, it’s only descriptive, so they don’t look at causation at all, and there wasn’t enough data to look at the causes of deaths over that 20-year period because that came from a slightly different collection.

Ellen Leabeater:

Interestingly while I was reading the report, Victoria has the highest rate of perinatal mortality.

Amy Monk:

Yes. Victoria had the highest rate of stillbirth and New South Wales, the lowest rate of stillbirth, but again you have to be really careful with how you interpret that data. It doesn’t mean that if you go and have a baby in Victoria that your baby is more likely to die. Sometimes what happens in large states like Victoria are that women who live in country towns on the border, say, New South Wales and Victoria, may go into Victoria if they have a high-risk pregnancy rather than travelling further to a higher risk hospital in New South Wales.

Again, it’s one of those things that we don’t have the answer for that.

Ellen Leabeater:

Indigenous mothers, what are the trends for indigenous mothers over the last 20 years?

Amy Monk:

Over the last 20 years, it’s been really good actually. We’ve seen a reduction in the overall perinatal mortality rate of babies of indigenous mothers of about 20% and that’s a really nice clear line showing that that gap between perinatal mortality of babies of indigenous mothers compared to non-indigenous mothers is slowly closing, but there is certainly still a long way to go.

Although the gap is decreasing between babies of indigenous and non-indigenous mothers, they still have a much higher rate of perinatal mortality than babies of non-indigenous mothers. If you look at the overall population of babies born over a two-year period, over 2011-2012, 4% of those babies were born to indigenous mothers. Yet, when you look at the rate of perinatal mortality, 17 babies per thousand births to indigenous mothers resulted in a perinatal mortality compared to 9.6 babies out of every thousand babies born to non-indigenous mothers. There’s is a very big difference there still, but still nearly double.

Ellen Leabeater:

This is the first report we’ve done of this kind in Australia.

Amy Monk:

Yes. It’s the first time we’ve looked at or the first time I asked a viewer or any group has looked at both neonatal deaths and stillbirths combined. It’s a very new and exciting report.

Ellen Leabeater:

What can health practitioners take away from it or what can policymakers take away from it?

Amy Monk:

They can take away a whole lot of things. There were a lot of things that came out of the report that were expected. For example, babies of mothers who live in very remote areas have the highest rate of perinatal mortality compared to those living in major cities. Babies of women who have a high socioeconomic status have lower perinatal mortality rate compared to babies of mothers with low socioeconomic status. Smoking again confirms what we already know that babies of mothers who smoked during the first or second half of pregnancy have high perinatal mortality rates.

Those sorts of risk factors that we know already exist. This type of report confirms that and what that enables policymakers to do is to target services to people who need it the most and to reduce that inequity or unfairness in those differences because they should be no reason that women who live in rural and remote areas have increased perinatal mortality compared to women living in major cities.

We need to look at targeting more services and things to those women to try and reduce that gap there.

Ellen Leabeater:

Amy Monk, lecturer in the Faculty of Heath at the University of Technology Sydney.

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In line of Pregnancy and Infant Loss Awareness Day, we’re going to be replaying a full interview with Dave and Ali. Dave and Ali shared their story as part of our stillbirth episode early this year. You can find that episode on the podcast as well. Dave and Ali’s story is one of heartbreak and coping with the death of their stillborn baby, Harper. We hope that by sharing this story, it can help other parents in a similar situation.

Dave:

Hi, I’m Dave.

Ali:

I’m Ali and we’re the parents of our little girl Harper.

Ellen Leabeater:

Can you tell me what was it like to find out you were pregnant?

Ali:

Exciting. Really exciting. I was on the slightly older age of a first-time mom but we were at a point in our lives where we were really ready to have, to start a little family, and it was really, really exciting.

Dave:

It goes as same as every parent is that it’s like, “Okay, we’re doing it.” We have a baby on the baby. I think everyone feels the same, the same way.

Ellen Leabeater:

What were you most looking forward to most about being parents?

Dave:

Everything.

Ali:

Yeah, a range of things. We’d already decided some family traditions like we were going to have reading out once a week.

Dave:

Once a week?

Ali:

I think it was once a week.

Dave:

It was once a day, wasn’t it?

Ali:

I can’t remember. I can’t remember, but sharing the things that we both love and had in common that were appropriate to share with a child as they grow up.

Dave:

I think it’s just excitement of like everything, the whole life of having a child and being a bigger family than a couple. We live in Bondi and you’d see parents with their prams or with their little baby beyond things. I was really looking forward to that. Just Ali does lapse at icebergs and I was looking forward to taking the baby for a walk or Ali did lapse, and just little day-to-day things.

Ali:

I guess adding to what we already have is a lovely life, so it would be lovely to add to that and share it with a child.

Ellen Leabeater:

When did you realise that something wasn’t quite right?

Ali:

It was a weekend and we went away for weekend and I think on the Sunday, I’ve had noticed that I haven’t felt a lot of lively kicking and I mentioned it but I could tell that my baby had changed positions, so we just initially thought, well, you know, he or she, we didn’t know what we’re having, was just being a little bit quiet so there was movement, there was change in positions, but not a lot of kicking.

Then in Monday morning, I went to work and I still hadn’t, and I phoned my midwife and initially she said, “Look, I’m sure everything’s okay, but you have called me in a way that we work, because if you called me, then I think you come in and see me because, obviously, you feel there was a need to call me.”

Dave picked me up and met me in the city and we went to the birth centre and they were fairly busy at that time, but initially they put on – they used to put a portable Doppler and they did sense a heartbeat, but they said, “We’ll take you to a bigger ultrasound machine.” When we go to that room, we were on a bed and they started the process again and then there was indication that the machine wasn’t working very well so they called in I think a doctor at that stage, Dave, was it?

Dave:

It was either a doctor or a technician.

Ali:

Then I think there was a third person and there was kind of all this talk about the baby being hard to find and the machine being a little bit temperamental and that’s probably as much as I remember because it gets quite dark and heavy after that.

Dave:

The baby being hard to find bit that they said that quite a few times and we both knew something was up then because the heartbeat had never been hard to find. It was always … Every other check-up, it was like, “Oh, this baby’s so healthy and lively, you know the heartbeat’s right there.”

Ellen Leabeater:

Going back to the movements, from what I understand, that’s kind of one of the first signs when the baby isn’t doing … with the movement that it’s been doing for the past few weeks or months, was there anything else, anything in that your experience, had any midwives or doctors said to you, “If you notice something different, call us as soon as possible”?

Ali:

No.

Dave:

No, not really, but we knew that if there wasn’t any movement, I guess that’s kind of an obvious thing, but it was never sort of …

Ellen Leabeater:

It was never highlighted.

Ali:

No, not specifically. I mean, obviously, if you felt something was wrong, you can check with your healthcare, but being really specific about movement and that experience, it wasn’t something that had been brought up.

Dave:

Especially in that situation, as Ali said, the baby was moving, like moving positions, it just wasn’t kicking. We’ve sort of just went in on that Monday morning thinking everything would be okay.

Ali:

As it turns out, the heartbeat that they did pick up when we very first arrived was actually mine, because by that stage, it was the first time that we had to go in for an unexpected reason. Everything else then is just being very routine, and I guess the distance from driving from the city to the birth centre, I became pretty anxious. By the time I got there, I was quite anxious, so they did pick up a heartbeat and they thought it was the baby’s initially but it turned out to be mine.

Ellen Leabeater:

What happened?

Ali:

What happened next?

Dave:

We were taken to this room, that room that the ultrasound was in. I said this a few times before but neither of us were looking at the monitor, and I was cradling Ali’s head to try and keep her relaxed. And the longer that you hear nothing, the worse the news is going to be. There was probably a wait, it was only a minute worth of silence, but it felt like forever. I mean, it’s a little bit blurry for me as well, but I think someone said, “I’m really sorry but there’s no heartbeat,” and I looked up and I saw that the monitor was clear that there’s no heartbeat.

Then there must be something in between this, but the next that I sort of remember was everyone at that stage, there was sort of four or five medical staff in the room and they all left and put a blanket over us and turned the lights out and unbeknownst to me, called my sister and my sister at that time was at UTS in the city. It seemed like five minutes before she arrived, but it must have been an hour at least for her to get a call from St. George and get in the car and drive down.

When she was there, we were taken down to another room for another ultrasound. Excuse me. I’m getting it mixed up. Before my sister turned up, we’re taken to another ultrasound room.

Ali:

Yeah, a more, a full kind of ultrasound suite, which I guess, is the final check to see that …

Dave:

Again, there was that silence for a few minutes. I felt really sad for the technician to have to tell us. It was her in the end that told us. Even then, I didn’t really believe it. I was saying to people, “No no no, can you check again? This is wrong.”

Ali:

We were then taken back to the room where we were just left on our own for a little while. Probably the next part, which was the really hardest part, I remember just lying there thinking, “What on earth happens now?” because, obviously, I still have this baby and I couldn’t think what possibly would happen next.

Our midwife came and had a chat within. Probably this is the thing that changed our experience and allowed us to take as much pleasure out of what was a tarrying and tragic time for us because we weren’t told what we should do. We were given advice and we were given that advice very gently. It was that if what we could consider was to go home and come back the next day and be induced and go through the birth naturally as I had planned. When I was told that, I couldn’t understand how you could or I could possibly do that.

I certainly knew I didn’t want to go and have surgery and have the whole thing just end in a medical kind of procedure. So I was really clear on what I didn’t want, but I still for the life of me couldn’t really think how I could possibly go through with the birth. But there wasn’t really any other options.

So we decided to do that and I think at that point I didn’t decide that thinking I can do this. I decided that thinking, “Well, there is no other option.”

Ellen Leabeater:

I can’t do the other thing.

Ali:

“I can’t do the other”, so that all varies, but it was so foreign. Sorry, Dave. It was just such a foreign moment that none of it made sense and none of it … There was no kind of rationale or no reason or no way of getting my head around what we were about to go through. It just felt … It was like you’re in this huge waste land and there was nothing that looked familiar around it. That’s how I felt.

Dave:

I found in my sort of state as shock at that time. The idea that we would leave the hospital just ridiculous. I guess that’s a point of view probably from a male’s point of view. Something’s wrong. We’re in a hospital, just fix it like we can fix this, this baby’s going to be okay. And the only place that we can fix this is in a hospital, and I hadn’t sort of realised the enormity over at that point, but I’m forever grateful that we did go home because it changed the whole …

Ali:

Experience. Well, it separated the two. There’s the day that we got the worst news imaginable and then Harper’s birth is a completely separate…occasion. Rather than the two blurring into this terrible day and then going through with the birth, we were able to separate them. When we went home that night, again it didn’t put us in any better position and that we didn’t feel any clear or have any idea what we’re about to go through but it did separate those two things.

When we arrived the next day at the hospital, we met a doctor and we’ve never met him … we had never met him afterwards, but his name was Chris and I think he might been the registrar or I’m not really sure. He had the job of just talking through what we could expect for the induction, which again was something that I had never given any thought of. That was another part that I had no idea what to expect, so he talked us through that process. More importantly, the very first thing he said to us when he met us was that he was sorry for our loss.

And, although our immediate family and friends, who we told the night before, gave us that support and love, you know they knew us, but this was a stranger telling us those words which have since proved to be the most helpful thing that anyone can say to us. I’ll never forget because for me at that time, hearing those words, it kind of clicked for me and I realised that even though this hadn’t turned out the way we were hoping or planned, I was about to have a child and be there no breath, it was still our child and she was about to be born, if she were here at that time.

And I think in some way, hearing that kind of shifted my thoughts a little bit and it gave me … I feel like it gave me strength to go through with the birth because it moved it from being this terrible loss to we are going to have this child even though we weren’t get to take her home and bring her up. So I’m forever grateful to that lovely Dr. Chris wherever he is now, because I think I felt it put me in a good position to start what was an unexpected and heartbreaking 48 hours that I was about to go through.

Ellen Leabeater:

When you held Harper in your arms for the first time, what was going through your head?

Ali:

I think that part of it, like any new parents, one of the first things that we did was talk about who she looked like. She had Dave’s nose and ears, and my mouth. I think that’s a good example of how we were grateful that we went home and went through with the birth, because there were few moments in the birth where I can almost say that I had almost forgotten that she wasn’t going to be born alive.

We had great care. The midwives who looked after us were amazing. We felt like any other parents would feel when they were going through the birth of their child. So I think there was enough time that when she was born, there was enough time to sort of be able to enjoy it as much as we could and that sounds really strange but it was … we were immediately full of love for her …

Dave:

It was heartbreaking but, yeah, it was one of the … it’s very hard to explain. We held her for quite a while. It was just very … we got a few minutes of kind of peace from it but it was very heartbreaking. It was very difficult leaving her because Ali was so healthy and the birth was so efficient. We could go home that afternoon, later that afternoon. Harper was born at lunch time. I think we left the hospital early evening, but that was really difficult leaving, because you’re not supposed to do that. You don’t leave your child at the hospital if you can possibly help it. Yeah, so that was difficult the whole afternoon. Not the afternoon, but yeah, that was the day.

Ellen Leabeater:

How do you cope with going home and instead of taking this beautiful baby girl home, you’re now going to plan a funeral?

Dave:

Exactly, and do things you never imagine doing like calling the … we’re about to pick up the pram, the stroller we just paid for and we had to call the shop. Just mundane things like that. Instead of getting all the stuff together that we spent the last few months getting together like a cot and a stroller and clothes and all that stuff that we had. We had to start thinking about planning a funeral, getting family down and looking at the stuff that we’d bought just sitting in the nursery every day that we had to then …There was a whole other thing like all this stuff.

Ali:

We did use … Because the induction took, it was probably 48 hours around from when we checked in to when Harper was born, and part of that time, we did talk about planning her funeral and we talked about the things. There were some immediate things that we wanted to do that was special for her. I guess we had, again, it’s not what you should be doing when you’re in a hospital and you’re waiting for your baby to be born. You know, planning a funeral is not what you’re supposed to do but we did take the opportunity to use that time very gently to make some of the decisions.

Dave:

To start thinking about it. Most of the time, we spent a lot of time in that 48 hours naming her because we had names but we thought that … Obviously, we had names if it was a boy or a girl, but we thought because this little girl just going to be a little angel, she needed her own new name. That was something that we hadn’t thought of. We used that time doing, thinking about that and starting to think about what we were going to do next.

Then getting home, that week between her birth and her funeral, we’re both busy people. We like to be busy and we work hard and we work a lot, so we just threw ourselves into organising everything right down to the last, everything like we didn’t really stop for the entire week did we?

Ali:

No, and the funeral home where Harper went was run by this … the woman was our contact was this amazing woman called Debbie. We visited Harper each day and despite our best efforts, no matter how hard we tried, every single day … because we seemed to be keeping ourselves so busy, every single day we got there, we were late, but every day, she had Harper out in the little chapel with the lights dimmed and beautiful music playing there waiting for us.

We went there every day right up to the day that we picked her up, and that was … we’re really grateful that we were able to do then when our parents who’ve all lived interstate came down, they’re able to come and meet their little granddaughter.

Dave:

The funeral home was offering all the services that they did – organising flowers and we said, “No, no, we’ll do that,” and organising their little booklet and we said, “No, no, we’ll do that.”

Ali:

Organising the urn, “We’ll do that.” We felt relieved when she finally said, “Well, what about a notice for the Sydney Morning Herald?” “Yes, you can do that.”

Dave:

Yes, they had very little to do because we just wanted to do everything because you don’t get a chance to do anything else, as strange as it sounds. Even things like the day of the day of the funeral, the hearse, I mean, babies have very small coffins. We didn’t see the need for her to travel in a hearse, by herself. So we picked her up in our car and took her to the church and took her to the crematorium after the service. We just wanted to do everything. For that week, we just kept extraordinarily busy.

The day after the funeral was probably one of the toughest, wasn’t it? Because it’s like that…

Ali:

Yeah, that terrible aftermath feeling.

Dave:

It’s like real life now. We didn’t know what to do.

Ali:

We ran away.

Dave:

We ran away. We literally bought two tickets to Italy. It was in the middle of winter here. We went to this little town called Assisi in Italy, little hilltop town and just hid, thinking that that would be good but, of course …

Ali:

It was while we’re there. It helped while we’re there. The anonymity helped.

Dave:

It did, but I guess we were running away from babies. Not babies, but one of the things that was really tough just after the funeral, we went, had to go to the Bondi Junction Shopping Centre, and the woman in front of us had the exact same stroller and a baby about six months old and that was like, “right”. I think that was really difficult so we thought we’d run away for a while but then there was babies in Italy as well. There’s babies everywhere.

Ali:

It also helped. It helped us to be away from the constant everyday reminders of our life from what we should have been doing and we knew that wouldn’t last, but I don’t know what else we would have done. That’s what we did for a little while and then we came back to Sydney, which was much harder than what we’d ever anticipated, really hard. That’s between getting back from being away, the next kind of few months, for me it just felt…I could feel a hole growing and it was just getting bigger and bigger.

Dave:

Yeah, it’s tough.

Ali:

Little things. There were days where crossing the street was really difficult. Like I’d do it, or I’d go to pick up dry cleaning and one day it took me four attempts. The first time I left, I walked in and paid and left the dry cleaning there, and then I went in again and picked up the dry cleaning and left my wallet there. This went on four times just to do a really simple act like that. Things became really, really heavy.

Ellen Leabeater:

Do you still think about that now? You’re saying that Harper would be 10 in May this year. Do you think about what grade she’d be in a school?

Ali:

All the time.

Dave:

All the time. I mean, you can’t not … we’ve got some friends who have kids, little girls who are around about the same age, and you see your fellows on Facebook and think, “Oh, that’s how big Harper would be now.”

Ali:

I think they’re for us for each, since she was born and for each year, we’ve always … I don’t think there’s a moment where she’s not in my thoughts. You can be doing everything else and be thinking about other things but she’s certainly our first thought in the morning and last thought at night. The milestones of starting school or doing all of those things, they don’t go unnoticed at all.

Dave:

We’d planned with … not planned, but we’d thought about what school she would be attending and so you drive past those schools now and you think … It’s always there. It’s always in the back of your mind.

Ellen Leabeater:

What would you tell your past selves going through that experience? Would anything back then have really helped you through that?

Dave:

Just that you dig it through. Like 12 years ago, our life plan was probably to have a few kids by now and be living, all settled down in a house with kids in school and stuff, but it didn’t work out that way and you have to embrace what you have got. We’re both healthy. We both have great families. I guess, yeah, there was a time after Harper died that it was kind of despairing of what this is … Nothing is going to ever be all right again. But, it is. It would be better if she was here, but …

Ali:

Yeah, I don’t think there’s anything that I would have done in terms of coping with the experience or how we got through it. I don’t think there’s anything that I would have done differently because you can’t take away those really dark days. And I think those really dark days and the days that are better and the ways that you learned to kind of enjoy and embrace her, I think that all makes part of the story and part of the picture.

I think like anything in life, there’s good things and there’s bad things, and that makes the whole journey. Even though ours is not certainly what we would have wanted, I still think that that’s … All of those things that happened had to happen for us to get to the point of where we are.

Dave:

Yeah, absolutely. Takes a while to get here and I think it’s almost 10 years since we lost her and I think it’s only been in the last three or four that we’ve really hit our stride again.

Ellen Leabeater:

Thanks for listening to the show today. For more info and transcript, visit 2SER.com/thinkhealth. This show is produced with the support of the University of Technology Sydney, Faculty of Health, and 2SER. Remember, if you want to show your love for 2SER of this supported drive, support.2ser.com is the place to go. I’m Ellen Leabeater. See you next week.

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