Our CEO and Co-Founder, Nikki sat down with Claire from Still Aware to discuss her story and the message that she wants all pregnant women to know.
Nikki: Can you tell me about the story that led you to create your incredible organisation, Still Aware?
Claire: Absolutely. I think I have to go back to a little bit about my first pregnancy. I was blissfully over the moon and had what would, some would consider a textbook pregnancy. My husband and I had been trying to conceive for a long time, and three years in IVF saw us being pregnant with our first-born, Alfie, and she was absolutely perfect in every way. I got to know her incredibly well in her pregnancy. I knew her movements, I liked to play with her. I didn't realise though that what I was doing in connecting with her was actually an ability to really to get to know her health and wellbeing. And I had some strange scenarios in my pregnancy that I now realise now were really big triggers indicating a baby at risk, or a pregnancy at risk, and a family at risk.
And that was that her movements slowed quite dramatically, but over the course of two weeks. So it was a slow occurrence. But she was a very different little individual. So she was a massive mover-and-shaker, she loved to dance to home. She loved when I read a certain book. She would always move around and play with me.
Nearing the end of my pregnancy, so as I was closing into 40 weeks. About 38 weeks, I started to know her movements changed a bit. But I didn't think that there was any reason for concern. In fact, I was sort of fed this information that that's okay, your baby will slow down, it runs out of room. All these sort of ... and I'm not sure exactly where I got that information, but I think it was multiple people had said those sorts of words to me. I didn't realise that movements were reason to be concerned.
I did present to my obstetrician. And I said, "Is this normal?" I didn't really explain what I meant by that. And in fact, I didn't really even understand myself. He just said, "Is your baby moving?" And I said, "Yes." And again, when I presented the following week and said, "Is this normal?" The same question was asked, "Is your baby moving?" And I said, "Yes."
But what we didn't discover was anything about my baby or what I meant by that question or what he meant by movements. The conversation closed and I was sent away, and everything was presumably fine.
So the night before Alfie was born, she was completely insane. It was like she was on a sugar high almost. It was really strange. She thrashed around in there and was moving differently to what was normal for her. Again, I didn't know there was any reason for concern. In fact, people told me that movements are good. Any movement. So when I looked at my husband, and I said, "Oh my gosh. This baby wants out." And I felt weird, and I felt uncomfortable. I then followed that up with, "Oh no, that's right, babies slow down before they're born. No. Everything's fine." Anyway, went to bed. So that was about 7:00 PM.
And then at 2:00 AM the next morning was the last time I would ever feel my baby move. And I was in labour, I went into hospital, and they asked me, "Is your baby moving?" And I said, "No." And there was a big difference between yes and no, and we didn't get that conversation. And so I learnt about what would be stillbirth in the worst possible way, and that was at the birth of my daughter, Alfie, at 40 weeks in a private hospital with a private obstetrician, having had hypno-birthing instructing and a yoga instructor and a midwife and everything that I thought I needed and all these experts around me, but yet, I failed to be told that stillbirth was a thing.
And so, my daughter was stillborn at term, absolutely perfect with no illness, no abnormality, nothing wrong with her. And I said, "Why didn't anyone tell me this was a possibility?" And unfortunately, no one else was.
It didn't take my husband and I long to realise that there was no charity that was talking about this. There was no information about stillbirth in pregnancy. And so, we had no choice but to start Still Aware, because I desperately don't want anybody to experience what we had to, which is birthing a perfectly healthy and well child that had every possibility and chance to live and survive, but having to give them back and walk out of that hospital with empty arms and a broken heart. I want to stop stillbirth. That's where Still Aware came from.
Nikki: It's amazing. I'm so sorry for your loss. It's incredible that I think Alfie's death has created such awareness and saved so many lives through that awareness as well. It's just incredible work that you and your husband are doing. So yeah. I guess on behalf of our entire community, thank you so much. It's such, such important work.
What is the mission of Still Aware?
We want to create a healthy pregnancy and an empowered pregnancy for the purpose of prevention of stillbirth. And in doing that, there's so much we can learn on the way. So our organisation is hellbent on raising awareness in pregnancy of all of the things that people won't tell us about. Things that aren't necessarily scary, but some might consider to be scary. But rather are empowering and that are useful for families to know. Things that they can actively do to protect their baby.
So we're all about active parenting in pregnancy for the prevention of the worst outcome, and that is fetal and maternal deaths. So we're an awareness organisation that believes that awareness and education can breed action and therefore prevention of stillbirth.
Nikki: Fantastic. And why is it so important for an expectant mum to bond with their bump and monitor the baby's movements?
Claire: Just like anything, when a mum is asked how their child is, mum really knows. And you know that old saying, mum knows best? Well, I actually truly believe it. And mums are the only ones that have 24/7 with their babies. So why shouldn't we be tapping into that and asking, "Hey, how is your baby? Tell me about your baby. Have you noticed any change in movements? What's your baby move like? Who is your baby?"
And that's why it's so critical that we include parents and mums in this. And it is about not just mums, but about their support community as well. Anyone involved in caring for that baby. But the connection between mum and bub is so crucial in life, and without mum and bub together, there is no pregnancy. So it is so important for expectant mums to get to know their baby's movements and bond with their bump. To protect their baby. Because movements are a great indicator of a baby's health and wellbeing.
At the moment while we can't hear them speak, and we can't see them physically move every day, that feeling of movement and that seeing the movement through the belly, is the best indication and tool we have with an unborn child. So that's the critical tool is that's actually their communication tool with mum and with the outside world.
Nikki: Can you give us an insight into how mums should go about bonding with their bump or monitoring baby's movements?
Claire: Sure. So the easiest way to monitor a movement is to get to know what your baby's like. So is your baby a morning person? Is it a night owl? So when does your baby normally move? When is your baby normally active? Just like outside of the womb, we have active or chiller babies, docile babies. The same could be said in pregnancy.
So a baby will have a really good pattern of movement. So it's important to get to know what that is. And the easiest way to do that is once you start to feel the baby moving ... and now, this is really interesting. Babies' movements can vary between 16 and 24 weeks in terms of the first movement that a mum will feel. So it's different for every woman. And that's the other really critical thing that we need to know is that not every pregnancy is the same.
We talk about this textbook pregnancy, there is no such thing in fact. We only know physiologically what happens, but every individual is just that. An individual. So it's really important to pay attention and get to know what the normal is for this little baby. Is this baby a mover-and-shaker? Is it somebody who is more likely to be a chiller and only moves a few times every hour, rather than a hundred times every hour? So get to know what the normal is for that baby. And often, this is a really good way to involve partners or friends or the family in this too. And particularly in that late second trimester. So closing into that third trimester, around 28 weeks, you'll have a really good understanding of how your baby moves.
So if it is reading a book to your baby, if it is rubbing your belly, if it is listening to music, if it is laying on your side. Whatever it is that gets your baby moving will be the routine that you have with your baby. So we actually talk about it as if you're playing with your baby. Just like you would be outside the uterus when your baby is born, you're actively playing with your baby whilst pregnant. And that is actually not only fun and good to bond with your baby, but also is a great indicator of how they're going. Because they will have a pattern of activity with you, that regular pattern that will remain the same all the way through your pregnancy and almost during labor as well.
Nikki: Last week when we spoke with our community in regards to this topic, there was lots of mums that mentioned they thought it was just purely a decrease in movement and at that point, that's when they should be concerned and seek assistance. Is that the case? That mums should only be concerned with a decrease in movement? Or as you mentioned, obviously you had the increase, or the decrease, I guess, for the two weeks leading up and then the sudden increase. Is there anything else in regards to movements that you would like them to know?
Claire: You mentioned, is it just decrease and the answer is no. It's whatever's not normal for your baby that needs to be reported. So a baby's movements will differ in the way that they feel as the pregnancy progress. So as a baby gets stronger, of course, their movements are going to get stronger. So this theory that a baby slows down is actually incorrect, because whilst they have less room to physically move, they are moving just as much, and so their movements will be more strengthened and more vigorous, and in fact, you'll feel them more and see them more. So if you feel a baby's movement weaken, that's not a good thing. You need to be aware of how your baby's moving and report any changes in what's different for your baby.
If your baby is always a crazy active baby and you use those words to describe your baby, then that's what your baby's normal is. However, if you've noticed that your baby is a chiller or if you've noticed that your baby has a really regular, consistent pattern and all of a sudden they have a rapid increase in movement that is unusual or different to them, then that needs to be reported because that's different. A decrease in movement and a rapid increase in movement that is unusual for your baby are two big indicators of a baby potentially at risk.
So all you would do is go straight in, get checked, make them aware that something's different from your baby's movements. And chances are, everything's okay, but if it isn't, then they can capture that and ensure that your baby is kept safe and sound and it may just be preventing stillbirth from happening to you.
So the whole idea of getting to know your baby is actually critical and hopefully you'll never have to use this information. But at least you know that, yeah, a movement is really important as their communication tool. But the strength of movement will get stronger as the pregnancy progresses. The pattern of movement will stay the same. And it's really important that you get to know those things, the strength, pattern and the frequency. And any change in that for you needs to be reported.
Nikki: Fantastic. Is the sleeping position of a mother while pregnant important?
Claire: Yes. It is, actually. What we know is that sleeping on your side is best optimal position for providing oxygen to you and your growing baby. So effectively, we believe that that's why sleeping on your side or settling to sleep on your side is critical, particularly in that third trimester when your baby is heavier and thicker and getting bigger and stronger. Then we all have what's called the inferior vena cava, which is a vein that runs down our spine. And that provides that oxygen flow. So if you can imagine when you lay on your back, that that can restrict that. So the theory is that in laying on your back, that you may be restricting that oxygen flow to you and to your growing baby.
So the whole idea is to settle to sleep on your side, and the really good thing is, it actually doesn't matter what side that you settle to sleep on, left or right. It doesn't actually matter. But the fact is that we need to start to settle to sleep on our sides in pregnancy from 38 weeks, and onwards. And that is protectively sleeping for your baby.
You've noticed I will use the words, settle to sleep. So if you wake up on your back, that's no reason to panic. It's just settle again to sleep on your side. What research has actually shown is that by settling to sleep on your side, that's actually the position you're in when you settle to sleep, is often the position you stay in for the deepest and longest part of your sleep. And so that's why it's protective. You're providing the best oxygen flow to you and your baby while sleeping, by settling on your side to sleep.
Nikki: Fantastic. I know mums are really worried about looking silly if they call or present to their doctor or midwife in regards to changes in movements. That was something that was really clear that came through when we opened it up to our community and asked the question. A lot of our community were also saying that they were actually being told that as long as movement's happening, that it's okay. If we're worried about our baby's movements, when should we be making the call to the doctor or midwife?
Claire: Straightaway is the easiest answer. The best thing is that research shows that don't delay. And it's really unfortunate that we get turned away. Look, I am in that boat too. I get that. And I am also a mum who's had several pregnancies, three deliveries and I've got two children here. And in my pregnancies, I still questioned going in. Which is ridiculous, right? But I think that that comes from a ... this perpetual notion that we don't want to bother people. That none of us really ever want to be a nuisance. But for some reason in pregnancy, we have this ... and I'm being very general here. But we have this perception that, "Oh no, I don't want to bother anyone." And, "Hey, I'm just being a nuisance. Everything will be fine when I get in there."
But if it was different when our baby was out. So I do not delay with my children that are here physically in my hands. Do you know what I mean? If they're not well, you go straight into the doctor. And if the doctor said to you, "Oh, look, I see that Billy is laying on the couch and he's not responding very well. But hey, don't worry, just wait until your next appointment that you have with your doctor." Or, "Wait 24 hours and then come in again." You wouldn't. You'd say, "No. Billy's behaving differently than that's normal for him. And I need you to see him. Listen to me. I know this is not normal for him."
The same as in pregnancy. We need to parent the way we would if our babies were outside our bodies, as much as they are inside. We really truly do know our bodies and our babies, and we can be the best advocates for them. Our children can't speak for themselves when they're in utero. They can only communicate through their movement.
So if you are concerned in any way, and that includes if you just have a concern, if you're just worried, if your instinct says, "I just have this gut feeling that something's not right." Don't ignore it. You have the power of intuition in your body to know that, hey, I just want to get checked and 100%, you are not wasting anyone's time. There is no midwife that I have met that would say, "Actually, I just don't want them to bother me. Don't come in." In fact, they say, "Why don't they come in?" When we go and do all of these training sessions, they say, "Why don't they come in? I had this woman who rang me and said three days ago, her baby's movements started slowing down. And she only rang me today. Why did she wait three days? I don't want her to wait. As soon as she feels that something's different, I need her to come in." So they do actually want you to be there. They care about your children as much as you do.
But you are that pivotal tool to knowing how your baby's going. And without you, it's subpar care, isn't it? So in the care of a baby in pregnancy, it includes mum. It includes collusion. And baby together caring for that pregnancy. Without mum communicating with midwife, we truly don't know how things are going. So it's critical that if you are concerned in any way, that you don't delay and you call straightaway.
Nikki: What a great way to think about it. I think that will be a huge eye-opener because you're 100% right. If your bub's here and they're not acting right, you're not going to take no for an answer, and I think it's such an empowering message to say, "Mums, trust your gut feeling. Trust that intuition. It's everything." And it's probably you getting that feeling for a reason. And that was certainly what happened with me in my scenario, so I think that's a great way to look at it. Is there any-
Claire: But to go back with that message, sorry.
Nikki: No, you're right.
Claire: It's not just theory. There's actually research to back that up. That intuition is a thing. That mums actually do know, that you are connected with your baby so use that connection and tune into that connection and know what's going on. And if you don't know the answer, go in and speak to your care provider. They're there for a reason. They're there to provide protection for you and your baby and give you the best chance of welcoming a healthy, happy baby into this world. And they need you as much as you need them.
Nikki: Such an important message. Is there any research on the effectiveness of monitoring bub's movements for the prevention of stillbirth?
Claire: Definitely. Statistically speaking even, if we look at the best-performing countries that give this information actively to every pregnant mother, they have seen a 50% reduction in stillbirths. So we're actually talking in Australia, we have the leading cause of childhood death in Australia is in fact stillbirth. And that is terrifying to think that six babies every day in Australia and today, six babies will be stillborn. But three of those babies have every chance of being here through sharing information about monitoring movements and getting to know your baby and reporting any changes. And if we look to the best-performing countries, they've actually done that. But we lack this information. We lack this communication tool between the clinical world and the maternal world to ensure that that conversation is happening so that we can best protect our children.
And if everybody was talking about this and everybody who was pregnant had this information, in clear and concise communication, and knew that they had the ability to protect their baby, we could actually be saving three babies a day in Australia.
Nikki: Wow. And to think that we think we have this amazing healthcare system and that's just such a huge gap when you actually put in the terms of three lives saved per day. That's just, it's really sad, isn't it?
Claire: Absolutely. And hey, we have an amazing medical system. But we also have amazing mothers, and we have amazing communities. And I think what happens in medicine sometimes is this paternalistic view of care where we place a doctor or a medical person on a pedestal. And rightly so, they have so much knowledge in that space. But who knows their baby better than anyone else? Mum. So that pedestal needs to be equal for mother and clinician. And without that line of communication, every pregnancy care will be subpar until that communication with doctor, midwife or a doctor and midwife to their patient and mother, family, with baby, everyone will have subpar care unless everyone takes this onboard and communicates openly and effectively and just says, "Hey, I need you just as much as you need me."
Nikki: Fantastic. How can our parents support Still Aware and the amazing work you do?
Claire: Look, we are a entirely not-for-profit, self-funded organisation. We received no government funding, and in fact, I've been lobbying for five years now, so since 2014 to see this actively used in medicine and in care and there's information out there. And the really sad part is the people that are paying for these brochures to be in people's hands are currently the bereaved parent. The parent that wishes that they had this information to help protect them in their pregnancy and potentially save their baby's life.
We know the information works. We know that this is protective and gives you the best chance of preventing a stillbirth from occurring in pregnancy. We know we cannot save every baby. But research has statistically, it's proven that we can save 50% of them.
So we actually really need your help in so many different ways. Awareness is crucial, so hey, share the message, follow us on Facebook at stillbirthaware and share our messages if you like them and if you agree with them. Lobby to your local Parliament and say we need this information in your hospital. Take it into a hospital. And hey, if you don't want to do any of that, hit us up and make us a donation. Every dollar counts, because a dollar is a huge effort to being able to create change in Australia, particularly when every dollar goes 100% to this cause and to raising awareness and providing education to parents and clinicians around the prevention of stillbirth and protecting the littlest lives of our Australian families.
Nikki: If you could leave our pregnant followers with one piece of advice, what would it be, Claire?
Claire: Trust yourself and trust your baby. The key takeaways here are there's six things that you can do that are protective of your pregnancy. Don't compare your pregnancy to anyone else's. This is your pregnancy, this is your baby. Get to know what's normal for you. Monitor the strength of your movements. Monitor the pattern of your movements. Monitor the frequency of your movements. Trust your instincts and report any changes straight away. And don't delay in calling. If something doesn't feel right, it's probably not right. Go in and get checked.
Claire Foord is the Co-Founder and CEO of Still Aware, you can follow their journey by visiting their website, Instagram or Facebook.
