How far should we go to save extremely premature babies?
Airdate: 
Tuesday, July 7, 2015 - 20:30
Channel: 
SBS

"Hardest decision you’ll ever make in your life" – Hollie Reynolds

Doctors call it the grey zone – the period of time when babies born prematurely are right on the cusp of viability.

Babies born between 23 weeks and 25 weeks and six days are often not breathing when they're born.

Decisions need to be made whether or not to resuscitate, and also whether to continue life support while they develop outside of the womb.

The chances of survival or survival without disability can change rapidly, day-to-day, hour-to- hour.

Insight hears from parents, doctors, nurses and ethicists about how these life and death decisions have to be made in the face of great uncertainty and in some cases, a matter of minutes.

 

Credits

Join the discussion by using the #insightsbs hashtag on Twitter, or posting on our Facebook page. 

Janelle Moran's Op-ed

"When I was admitted to hospital in labour at exactly 23 weeks in November 2011, I was shocked to hear the official line stated by doctors: they would not actively encourage resuscitation of babies born before 24 weeks of completed gestation," writes Janelle Moran. Read more here

Dr Janet Green's Op-ed

"Imagine how frightening it must be for a woman to go into labour when she is just over halfway through her pregnancy and her baby has only had 23 or 24 weeks to grow. She and her family are overcome with fear, uncertainty and helplessness," writes Dr Janet Green. Read more here

 

The Western Australian Preterm Birth Prevention Initiative

The WA Preterm Birth Prevention Initiative aims to reduce preterm birth by 35% over the next five years. Read more here.  

Help

  • SANDS1300 072 637
    Miscarriage, stillbirth & newborn death support 
  • beyondblue1300 22 4636
  • PANDA1300 726 306
    Perinatal anxiety & depression Australia 

Transcript

JENNY BROCKIE:   Welcome everyone.   Rochelle, you're here with your husband Peter, your daughter Tia was born at 27 weeks which is a week later, a week older than Charlie, little Charlie we just saw. Tell us what happened when you realised that Tia was going to be born prematurely?

 

ROCHELLE HARALAMBOUS:  So first of all it started off she was about two weeks behind in size and, then it got to 26 weeks and she started to get four weeks behind in size. So she was, at 27 weeks, she was probably about the size of a 23 weeker normal gestation.

 

JENNY BROCKIE:   And what sort of chances were you given that, about her survival?

 

ROCHELLE HARALAMBOUS:  Well at the start we were told that she wouldn't survive at all if they would take her out by probably three different specialists so we basically went home and thought that that was it and I said how long will this baby survive? How long will I have to wait till she passes away inside me? And they said it could be a week, it could be a month, we're not sure.  And then I asked if I could terminate and they said well, you could end up having a live baby and have to watch her die. So we went home thinking that we were going to wait for this baby to pass away, yeah.

 

JENNY BROCKIE:   Now Peter you found another doctor, why, at this point?

 

PETER HARALAMBOUS:  I just thought in the 21st century how can we let someone go home to have baby pass away and give birth to a baby that's passed away and I just couldn't accept that.

 

JENNY BROCKIE:   So what did that doctor tell you?

 

PETER HARALAMBOUS:  She was very positive.  She gave us a better outlook of what our chances were.  We actually spoke to the neonatal ward at the time, which…

 

JENNY BROCKIE:   And what did they say your chances were at that time?

 

PETER HARALAMBOUS:  25 percent survival and it was a…

 

ROCHELLE HARALAMBOUS:  50/50 chance of disability.

 

PETER HARALAMBOUS:  And 50/50 chance of disability. So!

 

JENNY BROCKIE:   And who you did feel when you heard that, what was your response when you heard that?

 

PETER HARALAMBOUS:  Well, my basic response was, we've got 25 percent chance of a baby sort of being, coming out being semi healthy, then I'm willing to take that chance, you know. 

 

JENNY BROCKIE:  Now Sue, you were that doctor, and you specialise in high risk pregnancies.  What do you remember of the conversation?

 

PROFESSOR SUE WALKER, MERCY HOSPITAL FOR WOMEN, MELBOURNE:  Yes, I remember very clearly meeting Rochelle and Peter and, as you can imagine, you know, that's a devastating diagnosis to give a family.  What we're weighing up is, what is the chance that we will be able to get more days out of the pregnancy such that we might be able to get more time, so more maturity as we've heard, and perhaps a little bit more size, that we might be able to have a baby who is a candidate for resuscitation. I could see that Tia had a little bit of condition left that we had a little bit more time and it enabled us to have that conversation with the paediatricians.  It gave them the chance to walk through a nursery like the one you've just seen the footage of and to have a real understanding of what it would mean to have a baby at 500 grams.

 

JENNY BROCKIE:   And when you heard all this information, did you two agree on what to do?  Were you in unison about what you should do?

 

ROCHELLE HARALAMBOUS:  No, not really.   I, well I knew in my heart that I needed, I was carrying the baby and I needed the baby out to hand it over to the doctors and see what could be done.  I knew I just couldn't live with myself if I didn't try everything possible.

 

JENNY BROCKIE:   So you were prepared to try absolutely everything?

 

ROCHELLE HARALAMBOUS:  Yes.

 

JENNY BROCKIE:   To keep Tia alive?

 

ROCHELLE HARALAMBOUS:  Yes.

 

JENNY BROCKIE:  And Peter?

 

PETER HARALAMBOUS:  I had my moments where my main concern was the disability, where I didn't want a situation where we've bought a baby into the world which is severely disabled and then we've got no rights to switch off those machines. So that's my, I never, not for one minute did I not want to give Tia a chance but that was our major…

 

JENNY BROCKIE:   But that was weighing on your mind quite heavily?

 

PETER HARALAMBOUS:  That was weighing on us, yes.

 

JENNY BROCKIE:   After Tia was born at 27 weeks she spent 168 days altogether at the neonatal intensive care unit. What sort of care did she need during that time?

 

ROCHELLE HARALAMBOUS:  Well she was on life support for four months of that time and she had heart surgery at 1,000 grams.

 

PETER HARALAMBOUS:  Six blood transfusions.

 

ROCHELLE HARALAMBOUS:  Yeah, about six blood transfusions, jaundice, stomach issues, suspected neck, lots of - a couple involvement from other specialists at the Royal Children's Hospital. What else?

 

PETER HARALAMBOUS:  Hydrokefolis was suspected.

 

ROCHELLE HARALAMBOUS:  Fluid on the brain which is hydrokefolis.

 

JENNY BROCKIE:   That's a long time to be dealing with all of that, I mean what was that like for you, the two of you?

 

ROCHELLE HARALAMBOUS:  Up and down really. Like you'd take a couple of steps forward and you'd be really excited and then the next day you'd go in and it would be a few steps back. So yeah, it was very up and down.

 

JENNY BROCKIE:   We'll come back to Tia's story a little bit later on. Janelle, you went into labour much earlier than Rochelle at around 23 weeks, tell us what happened with you?

 

JANELLE MORAN:  I was exactly 23 weeks pregnant to the day.  I'd had another otherwise normal healthy pregnancy apart from the fact that I had severe morning sickness so I'd been fairly miserable all of those months, but the baby was doing well.  I'd had my twenty week scan, we'd found out we were having a baby boy and felt like the sun had to come out again during, you know, I didn't…

 

JENNY BROCKIE:   The fog had lifted?

 

JANELLE MORAN:  The fog had lifted and I started to feel excited and it happened very suddenly. I work a job where I stay overnight, I work nights and I sleep over, I go home the next day. I went to work on a Wednesday night and I remember sending Leslie a text message saying I've got this funny pain in my back, I'm such a wimp, how am I ever going to handle labour, you know? I want narcotics now and I've just got a back ache.  So I left work at 9 o'clock that morning and I was driving along and I had another pain and so I pulled over the car and I thought look, I'll just ring the hospital and…

 

JENNY BROCKIE:   Tell them?

 

JANELLE MORAN:  I'll just tell them and I can pop into the hospital on my way home and they can give me a Panadol and you know, say there, there. I got a park right outside the hospital but it was only - and,  you know, I was congratulating myself, it was only a two hour park and you know, I was like oh…

 

JENNY BROCKIE:   So you were unprepared basically for what was about to happen?

 

JANELLE MORAN:  I was completely…

 

JENNY BROCKIE:  Completely unprepared?

 

JANELLE MORAN:  I mean I drove myself there in labour but I didn't know.

 

JENNY BROCKIE:   Didn't know you were in labour?

 

JANELLE MORAN:  What it was.

 

JENNY BROCKIE:  What were the doctors telling you about being in labour at 23 weeks?

 

JANELLE MORAN:  I remember the obstetrician, he did an examination and he sat down and he took a deep breath and I knew he was going to say something and he said:  "I'm so sorry Janelle, it looks like you're 4 centimetres dilated." And it wasn't until quite a few hours after that that they sent a neonatal doctor to see us who, I guess, explained to us what a grim situation we were in if our baby were to be born that day.

It was very grim. I remember the doctor saying to us, you know, if your baby comes today he has a very, a very grim outlook.  Things do not look good for him and at that point you know, she said, I think that I probably said to her what would you do, you know, I wanted somebody to tell me…

 

LESLIE POGSON:  But even when we were talking to that doctor, it was like if your baby comes today but we didn't actually know that he was coming, it was still, there was still hope.

 

JENNY BROCKIE:   You were still unsure whether you…

 

JANELLE MORAN:  Everybody was still very hopeful, like we weren't very stressed, like it didn't feel like an emergency situation even though it really was.

 

JENNY BROCKIE:   Were the two of you talking about what sort of decision you'd make though if you were going into labour and you were about to have the baby?

 

JANELLE MORAN:  I think…

 

JENNY BROCKIE:   Well you were in labour but if that…

 

JANELLE MORAN:  I think when the neonatal doctor was there we looked at each other and we both said we don't want our baby to suffer. 

 

JENNY BROCKIE:   So what was the decision?

 

JANELLE MORAN:  We made the decision that we didn't want to resuscitate the baby, given the, you know, given what they were saying.  They were saying you know, if he does survive he – you know, he, he won't live a normal life. You know, he will have significant disabilities and they will be global disabilities. They will be, you know, they could be physical, they could be intellectual, there'll be learning disabilities, it was a whole host of…

 

JENNY BROCKIE:   Things?

 

JANELLE MORAN:  Things, and this child might not even ever know who you are or…

 

JENNY BROCKIE:   How much time did you have?

 

JANELLE MORAN:  None.

 

JENNY BROCKIE:   To have this conversation together, to make this decision?

 

JANELLE MORAN:  Yeah, I think we probably spoke to the, how long did we speak to the neonatal doctor for?

 

LESLIE POGSON:  I don't know.

 

JANELLE MORAN:  Probably 15 minutes?

 

LESLIE POGSON:  Yeah, 15, 20 minutes.

 

JANELLE MORAN:  It felt like a very, I think Leslie would agree, it felt like a very theoretical decision for a very theoretical baby.

 

JENNY BROCKIE:   And what happened once Max was born?

 

JANELLE MORAN:  Well, when I first saw Max I wasn't, I wasn't shocked by how small he was but I was shocked by how real he was because until that point this baby had felt like a bit of an illusion to me.  Like you know, even when you see your baby on an ultrasound scan it doesn't look like a real person and I think that I didn't know, I didn't know that I had a real living baby inside of me at that point. And so I just, I was in awe of, you know, here is this physical, this is a baby, like he is a baby, he looks like a baby.  You know, I could see that he, his hands and feet resembled Leslie's.  Like he was so real and I think that we couldn't have anticipated, we saw Max and we, I remember turning to Leslie and saying we made him, look, look how perfect he is?

 

JENNY BROCKIE:  And how did you feel then about the decision that you'd made?

 

JANELLE MORAN:  I think, I think at the time I just accepted.  It wasn't until long after Max had died and we had gone home that I guess we even thought about the decision we had made. We were just trying to put one foot in front of the other and figure out how we were going to tell our families and what was going to happen to Max and, you know, we were just in this hospital room which became our world.

 

JENNY BROCKIE:   Leslie, what was it like for you?

 

LESLIE POGSON:  I sort of, I'd bounced around between being Janelle's partner and being Max's dad.  I mean throughout the later stages of the labour you know Janelle was really struggling with just getting through it and I was just trying to be there for her and just trying to get her through it and I don't know exactly how it happened but I was the first of us to hold him and I just remember, I didn't know how to hold him. How do you hold a baby that's about to die? How does, a new dad hold the baby, I mean that's one of the classic things that the dads say but I didn't, I didn't know how to hold him and I remember Janelle telling me off for not having a blanket over him because he'd get cold as his mother.

 

JANELLE MORAN:  Yeah, I remember the midwife asking if Leslie wanted to cut the umbilical cord and he couldn't bring himself to do it.

 

LESLIE POGSON:  I didn't want to do it wrong.

 

JANELLE MORAN:  We were both scared and I think, you know, the reason that Leslie ended up, you know, holding Max first was because I couldn't.  I thought that I would break him or drop him and so Leslie held him and I cradled his head with my hand and I think it was quite a while before I felt like, you know, enough of, that I had my wits about me that I could hold him safely and, you know, but I did worry that he was getting cold. It was just, you know, put a blanket on him and, yeah.

 

JENNY BROCKIE:   These are huge decisions to have to make in such a short amount of time in the circumstances you've described. How do you feel about that decision now that you took?

 

JANELLE MORAN:  Look, I think, you know, Max would be nearly four now so we have, we have had time to consider, you know, in the dark of the night every part of this decision and its, you know, every potential outcome that has kept, you know, kept us awake and I think rationally, we feel comfortable that the decision we made for Max was the right decision in theory. You know, we could not offer him a good quality of life but the only thing that we could offer him was a good death and we strongly believe that he had that. It was, you know, he had a beautiful life and he was held and kept warm and loved and kissed and cherished every moment of his life, you know, he didn't suffer and as a parent, like we felt that was the one thing we could give him.  And so you know, rationally I think we did the right thing but sometimes your heart says…

 

LESLIE POGSAN:  What if?

 

JANELLE MORAN:  Your heart says what if and, you know, it's like, you know, it's like that feeling when you realise, you know, like maybe you've left your baby on a plane or something.  Like just this intense anxiety oh my God, what I have done?

 

JENNY BROCKIE:   The panic?

 

JANELLE MORAN:  The panic, what have I done?  What have I done?

 

JENNY BROCKIE:   There's another what if of course which is the what if that could have been Max surviving with a terrible quality of life?

 

JANELLE MORAN:  And what that would mean for our life and you know, I think it's particularly complicated for us now because we have a two year old daughter, Alice, and you know, to look at her and think had Max not died there'd be no Alice. We can't, we can't imagine.

 

JENNY BROCKIE:   Theresa, your daughter Stella was the most premature baby born in Australia at 22 weeks and five days. What did the doctors say to you once it was clear that you were going to give birth to her so early?

 

THERESA MILOSESKI:  It was confronting.  I had literally just, you know, I went to my obstetrician thinking I had a leaky bladder and I was raced from his office to the hospital in an ambulance and told I couldn't get up off the bed any more. I had two of the neonatal doctors coming to speak to me and they spoke at length and they were really kind about it and nice about it, but they were brutally honest and you know, did I have to make that decision then? I think we had a bit of time, they weren't, it wasn't like I was in labour, so you know, the aim was to get to 24 weeks.  23 weeks would be brilliant but 24 was sort of the aim.

 

JENNY BROCKIE:   Was there ever any question for you about - what you and your husband about what you would do in terms of resuscitation and life support and so on?

 

THERESA MILOSESKI:  No, because we'd been through such a journey to have this baby and you know, we tried for eight years to have a baby, I'd had miscarriages after miscarriages.

 

JENNY BROCKIE:   You'd had IVF?

 

THERESA MILOSESKI: I had IVF, I did six rounds of IVF. I did everything we could possible to have a baby and in my mind was any question? Probably not!

 

JENNY BROCKIE:   So you wanted her resuscitated at all costs?

 

THERESA MILOSESKI:  I remember the night before she was born, I remember saying to the nurses, and I was probably a bit high as a kite on drugs because I was battling an infection too and yeah, I remember saying just tell them I really, you know, we want resus, we want resus.

 

JENNY BROCKIE:   Srini, I wanted to ask you, Stella was resuscitated at 22 weeks and five days in Western Australia, would that have happened at your hospital in New South Wales do you think?

 

DR SRINIVAS BOLISETTY, ROYAL HOSPITAL FOR WOMEN, SYDNEY:  I think, well, in my hospital we take the individual circumstances, like every pregnancy is unique, every woman is unique, then we go and talk to them, we look at all these factors.  There are a number of risk factors that go against you, there are a number of factors that work in favour of you. Like in your particular scenario, probably yes, we would have given you and given the baby an opportunity to go along with your wish and done everything possible.

 

JENNY BROCKIE:   But hospitals differ in Australia in terms of the number of weeks where they consider, you know, viability is likely. Now New South Wales, what is that number of weeks?

 

DR SRINIVAS BOLISETTY:   There is no one standard or policy among the hospitals and also we never wanted to have just a cut off. Gestation as a cut off, you know, like not taking any other factor into consideration we thought that is a bad thing to do. So that's why in New South Wales and ACT we came together and came up with this grey zone, from 23 weeks to 25 plus six weeks. During that time it's just not the gestation that we should be considering, we should be looking at every other factor.

 

JENNY BROCKIE:   Yeah, well Craig here is a senior obstetrician in the hospital where Stella was born. Why is Western Australia intervening to save babies at 23 weeks more often than the other states are?

 

ASSOCIATE PROFESSOR CRAIG PENNELL, KING EDWARD MEMORIAL HOSPITAL, PERTH: I agree with everything that has been said so far which is that every case is different but I also work in a very unique hospital with an amazing team of neonatologists who have got very, very, very good at it and so we're in a very proactive environment and so therefore, our grey zone has moved downwards.  And so for us the grey zone is 23 to 24, and babies in the 22nd week we take into consideration a lot of the information, as we've heard before, because more often than not they are women who have taken five, ten, fifteen years to get pregnant. They've had many challenges to get there and for them this may be as good as it gets. In our situation it's about expertise and people feeling comfortable, and our data that we present to families is perhaps different to the data that smaller units present.

 

JENNY BROCKIE:   How is it different?

 

ASSOCIATE PROFESSOR CRAIG PENNELL: Well, for example we have complete follow-up on every baby from 22, 23, 24, 25 weeks in terms of their outcomes and based on our own Western Australian data, 22 weekers survival is 5 percent.  I think everyone would agree that that's a very, very bad thing and should be avoided at all costs.  At 23 weeks our survival rate is 50 percent and at 24 weeks it's 75 percent so there's a very steep increase there over that window of time and by the time you get to 28 weeks it's 96 percent.

 

JENNY BROCKIE:   And what are the health outcomes or those babies at 23 weeks?  What are the longer term health outcomes for them?

 

ASSOCIATE PROFESSOR CRAIG PENNELL: So if you look at 23 weekers with the 50 percent survival, then of the 50 percent that survive, about half of those would have moderate to severe disability.

 

JENNY BROCKIE:   About half of them?

 

ASSOCIATE PROFESSOR CRAIG PENNELL: About half, and by the time you get up to 24 weeks that number is now down to about a bit less than a third.  That includes things like cerebral palsy where the rates are about 8 to 10 percent.

 

JENNY BROCKIE:   So how do you work out what to say to the parents faced with those sorts of statistics?

 

ASSOCIATE PROFESSOR CRAIG PENNELL: We're lucky in that we've got local information and local follow-up data that goes for decades and I think that is our unique and fortunate position that we're in. As we said, I mean one of the things that I choose to do personally is I use the glass is half full or half empty.  So we can say that there is a 50 percent chance of having a moderate to severe disability, there's also a 50 percent chance that you won't have that.

 

JENNY BROCKIE:   It sounds like you have a glass half full rather than a glass half empty attitude to that 50 percent chance?

 

ASSOCIATE PROFESSOR CRAIG PENNELL: Yes.

 

JENNY BROCKIE:   So do you tend to veer, with your, the way that you present that information to the parents, do you veer towards the positive?

 

ASSOCIATE PROFESSOR CRAIG PENNELL: I, I think I try and, try and remain neutral and if, as someone said earlier tonight before that if they ask you what would you do, I don't answer that question. None of us do. But I think that…

 

JENNY BROCKIE:   It's what everyone wants to hear though, isn't it?

 

ROCHELLE HARALAMBOUS:  Yeah.

 

JENNY BROCKIE:   I mean it's an incredibly difficult area and you know, when you hear these stories and I just wonder how that weighs on you?

 

ASSOCIATE PROFESSOR CRAIG PENNELL: I'm also fortunate that my professional work is primarily at this end of the spectrum so I only look after high risk women.  So I, you know, in the last - yesterday I delivered a 600 gram baby and look after someone at 23 weeks so it happens all the time so you get better at doing it.  But each individual case is still very difficult and many of us know that we go home and sit at the dinner table and our families going on around us and we're completely ignorant as to what's going on because it has a burden on the staff as well.

 

JENNY BROCKIE:   Madeleine, you were rushed to hospital at 23 weeks, eventually your son Zeke was born at 32 weeks. What went through your mind in that danger period?

 

MADELEINE HETHERTON:   Well actually at 22 weeks, I sat in the hospital that day and they did tests and said yes, your waters have broken but you're not in labour. There's actually nothing we can do except kind of watch you, if your baby comes, it's 22 weeks, it's too early and there's nothing we can do and the babies not viable. So I went home and went to sleep, I was exhausted and went in and it was 23 weeks the next day so when I was officially admitted into hospital I was definitely 23 weeks. And kind of because I'd passed the magical line in the sand of 22 and 23 weeks, then suddenly went into this whole entirely new process because the most likely thing is that I would have a baby at 23 weeks and really we should be thinking about that and trying to work it out and that it was a day by day thing that that was actually what was in front of us and we should just step through the situation in front of with us which is what we did.

And I was also told at one point by a senior doctor that I should consider myself, I should look at it as a glass half full, I have to say – I found it the least helpful comment in the entire experience to be told at 23 weeks, understanding the statistics and accepting them, I wasn’t challenging the doctors on that, that I should consider any part of my situation as being a glass half full.

 

JENNY BROCKIE:   And what did you, what were you deciding?

 

MADELEINE HETHERTON:  Look it took days because I just found it completely overwhelming.  I also found that there was, like the statistics and the kind of materials we were given were quite clear and printed and that's actually quite helpful. I mean I would have rather had the truth in front of me than to have not have it, but it was also the interpretation of it was quite different between doctors.

I think in some ways I think actually what I really needed to do was to talk to someone that was not a doctor, was kind of more an ethicist or somebody that was dealing with women with these kind of decisions being put in front of them and they did exist in that hospital.  It's just that they weren't kind of really part of the team that was looking after us.

 

JENNY BROCKIE:   Did you feel under pressure to make decisions? I mean did you…

 

MADELEINE HETHERTON:  Yes, I did, I did, and also because decisions did have to be made.  It wasn't like we could just exist in this vacuum.  It was not, you know, I felt like absolutely crushing kind of sense of just sadness and kind of guilt over what to do and most prospects seemed fairly bleak at 23 weeks.  And I, but I also, I mean to be honest there was, not inconsistency exactly in the data but there was inconsistency in the optimism that I was presented with by different doctors and that's quite confusing. To be honest, I don't actually blame anyone for that, I think that's a really human response.

 

JENNY BROCKIE:   Very human.

 

MADELEINE HETHERTON:  Doctors and nurses struggle, I know they struggle with this.  But I was at the beginning of the journey and I didn't know all of that was ahead of me and I just felt that the risks were too great and I felt all of it was devastating and the idea that I would give birth to a live baby and watch it die, was beyond, beyond anything I could imagine and that's what I was expecting to do. But…

 

JENNY BROCKIE:   So you had the time to almost prepare yourself for the…

 

MADELEINE HETHERTON:  Yeah.

 

JENNY BROCKIE:   For that situation which didn't end up happening?

 

MADELEINE HETHERTON:  Eventually we got to 24 weeks and it's like oh, well 24 weeks, that's pretty good isn't it but I still was really worried about this because I'd had, because I found this inconsistency of kind of interpretation, like not that the data changed but people's attitudes to what I should be doing were different.

 

JENNY BROCKIE:   How?

 

MADELEINE HETHERTON:  I felt enormously guilty about it too but I also felt the weight of other people's I guess judgement about that. I really felt it wasn't, it was a medical decision but it was also the greatest ethical decision you could ever make in your life and I felt very lost in that decision.

JENNY BROCKIE:   Claire, you're a nurse and you had twin girls Hazel and Mia, by caesarean at 23 weeks and five days?

 

CLAIRE SCHWAL:  Yes.

 

JENNY BROCKIE:   How long did you and your husband Josh have to decide what to do?

 

CLAIRE SCHWAL:  Similar story. Problematic free pregnancy, we had actually, I'd finished night shift on the Friday night, I was in charge and we'd gone down to the holiday house and waters broke spontaneously.  We got to the hospital. We were given the, I remember two very lovely but direct doctors sitting us down and discussing with us the statistics, like everybody else has been told. And at that point we were very, and whether that's my nursing background but I was very adamant that if their heart wasn't beating, that they were not for resuscitation. Three years on I'm emotional now. I'd seen how horrendously bad it is for children and what's involved, so for that to happen to my children I was just flat out no.

 

JENNY BROCKIE:   And what did happen?

 

CLAIRE SCHWAL:  I was labouring and a lovely, I remember Jim, Dr Jim came and sat down and almost knelt down on the ground next to me and said:  "I hear that you, you know, if their hearts stop you don't want resuscitation", and I said yes. And he said:  "Well, I've been doing this a very long time and if I think, do you trust that if I, I experience and if I think they look good and they're a good size and they're a good colour that they're worth saving." And I said okay, because I was just so damned unwell at that point I thought oh, well we've got no other option here.

So I went off for an emergency caesarean and woke up and then Josh came in.  We were told that we had two girls that were in NICU. For that stage it was very surreal, very surreal.

 

JENNY BROCKIE:   Josh, how much did you leave up to Claire, given her nursing background?

 

JOSHUA SCHWAL: A lot of it, most of it. I looked at especially the time in the hospital, I looked at it very black and white.  Our conversation was no, this is it, it was nothing, we're not going to have kids.  So, but anything from then on, yeah, all those decisions were, well not all of them, sorry but a lot of guidance was taken from Clare's experience, there's no doubt, yeah.

 

CLAIRE SCHWAL:  When you hear statistics and discussions and I deal with it on a day-to-day basis at work, there's no, you know…

 

JENNY BROCKIE:   There are no answers.

 

CLAIRE SCHWAL:  Will death come, I don't know. Yes it will but I don't know when. Statistics, I'm not a particularly great mathematician so, that's sounds terrible but you know, when you're talking, you know, 60 percent survival rate I'm just thinking in my brain well, will they go to school? Will they have an understanding?  Will they need a tutor? Will they need, you know, and on the spectrum of one being completely bed bound for the remainder of their life and ten being completely independent, where will my child fit in?

 

JENNY BROCKIE:  That's what you wanted to know?

 

CLAIRE SCHWAL:  And we had two of them to worry about, that was the, will we have one that's alright or one that's not. So, but yeah – three years down the track they are happy healthy, setting goals in their development, so we are very lucky, very lucky.

 

JENNY BROCKIE:   Janet, what do you think about the way these decisions are made?

 

JANET GREEN, UNIVERSITY OF TECHNOLOGY, SYDNEY:  My research is actually on neonatal nurses and how they, the ethics of what they believe in terms of saving extremely premature babies. They struggle with this but as I said, there's nothing in the data that says no, don't save them. What it actually says is give them a go, meaning the babies, but be prepared to make hard decisions and in fact…

 

JENNY BROCKIE:   Meaning the hard decision to take them off life support?

 

JANET GREEN:  Absolutely. My doctoral thesis is called Balancing Hope With Reality and I think it's basically about uncertainty and when obstetricians or neonatologists, neonatal nurses give different opinions and things like that,  there is so much uncertainty and that's why it's really about not making any blanket decisions.  It's about, you know, individual babies, families and what can the possible outcomes be?

 

JENNY BROCKIE:  I mean the doctors, the doctors here, you say you give the facts but you must give more than that.  I mean there must be - the expectation from a patient would be that you would give more than the facts. You would give them some indication of what you think or what you would do. Do you really strictly stick to that Sue?

 

PROFESSOR SUE WALKER:  I mean it's interesting that we hear from families that sometimes they wish someone would take that decision for them and who can blame them? It's the worst most difficult decision that you have to live with for the rest of your life and of course you would prefer someone to take it out of your hands, but parents don't thank us for that further down the track where they have to sort of be able to live with the fact that we made this decision and we made the best decision we could with the information that we had at the time, which in all honesty is all that any of us as parents can do.

 

JENNY BROCKIE:   What about the idea that just because you can save a baby, should you?

 

JANET GREEN:  It's not so much the saving now for the nurses, it's actually the so what factor in terms of okay, what if this baby survives in a very damaged condition? We as a society have actually saved this baby, haven't we now got the responsibility to ensure that the resources are available and I think that's, from the nursing point of view, where the debate has actually moved to.

 

JENNY BROCKIE:   What about the ethical debate Francesca, because I'm interested in that as well, the broader ethical debate around this issue.  You're a bioethicist, what do you think about what you've heard?

 

FRANCESCA MINERVA, UNIVERSITY OF MELBOURNE:  From an ethical perspective we really think it's important for the patients, the parents in this case, to make an autonomous decision and an autonomous decision is an informed decision, a decision which you know the facts and you know what are the chances that these will work out eventually. And the facts are not very clear in this case. You have statistics, you have numbers, and especially you don't really have much time to think about this. So I thought well, why don't we start telling all women who are pregnant around you know, 12, 13 weeks that they should start thinking about this. Obviously you don't really want to upset people with these kind of thoughts but if you are prepared then you are more informed and you can give your consent in a different way.

 

JENNY BROCKIE:   But then again I wonder what it would be like to get that information, it might be really frightening.

 

JANELLE MORAN:  I wonder whether you could then take it in at that point. Like everybody thinks it's not going to happen to me.  I'm sure had I been given that information I would have just thought well…

 

JENNY BROCKIE:   Well, for some people it might create an anxiety about the pregnancy too. I mean it's very hard to weigh these things up. Alberto, you're a bioethicist as well, what do you think about this question around viability?

 

ALBERTO GIUBILINI, CHARLES STURT UNIVERSITY:  Well I think that it's important to point out that this is also a decision about the life that the parents should expect for themselves. So it's not only a decision about the baby, it's a decision about what parents feel they're capable of taking on themselves. And I think it's been downplayed. So I guess often parents will feel guilty about the kind of decisions they make but I think it takes courage to make a decision in this case in both ways.  

 

JENNY BROCKIE:  Jenni, your son Flynn was born at 23 weeks and five days.  What did you know about his long term outcomes when he was born?

 

JENNI RIGBY: Well it was all a bit of a shock to us as well. I woke up, felt a bit funny, ended up going to hospital, I found out I was fully dilated and they said that my twins would be born, our twins would be born that morning. They said to us look, seeing as the fact they're twins and we're going to have to fly them 500 kilometres at least after their birth, you've probably got a 10 to 15 percent chance of survival and that was pretty low, even lower than a normal 23 and five day. And we just said look, do everything you can.

They did resuscitate them both. They were actually big for their term, they were 720 grams and 630 grams. Then they, yeah, they did talk to us about the fact that, yes, if they make it through the first 48 hours and if they then go on to survive and come home from hospital, that they probably will have long term disabilities. We briefly discussed it but there wasn't a lot of time. I just said that's fine, I just want my babies to survive if possible.

 

JENNY BROCKIE:   And Flynn's twin brother Jack, didn't make it?

 

JENNI RIGBY:   Yes, he didn't make it, no.  Which obviously was very distressing and very difficult and they actually said to us at the time you may want to hold off on having a funeral for Jack because Flynn probably won't make it another few days.

 

JENNY BROCKIE:   Was Flynn on life support at this stage?

 

JENNI RIGBY: Yes, yes, and that was pretty hard and we said no. Well if we're kind of holding off waiting for that we're kind of expecting it more so no.

 

FRAZER RIGBY:   We were living in hope. At that point we'd seen him be resuscitated a couple of times once again.

 

JENNI RIGBY: And…

 

JENNY BROCKIE:   Let's have a look at Flynn now with his school buddy Declan.

 

VIDEO PLAYED.

 

DECLAN:  Oliver is waiting for you. Are you going to go and play soccer?

 

FLYNN:  Yes.

 

DECLAN:  Yes.  What is your favourite sport, Flynn?

 

FLYNN:   Katy Perry.

 

DECLAN:  I don't think Katy Perry is a sport. Do you play soccer?

 

FLYNN:  Yes, yes.

 

DECLAN:    Flynn, I need you to get up!  Look, there is Mr Henry. Do you want to go to the Cairns Hospital?

 

FLYNN:  Yes.

 

DECLAN:   Do you need to go to Cairns Hospital?

 

FLYNN: Yes.

 

DECLAN:   I don't think you need to go to Cairns Hospital if you keep scratching yourself. Do you like Cairns hospital, is that why you kept mentioning it?

 

FLYNN:  Yes.

 

DECLAN:  Did you get into a high school?

 

FLYNN: Yes.

 

DECLAN:  What high school did you get into?

 

FLYNN:  Saint Augusta.

 

DECLAN:  Are you excited?

 

FLYNN:  Yes.

 

DECLAN:  Do you know if anyone else going there?

 

FLYNN:  Oliver.

 

DECLAN:  Oliver. He is going there too. Anyone else?

 

FLYNN:  He is going –

 

DECLAN:  What did you say? A bus. A bus?

 

FLYNN:  Yes.

DECLAN:   You are going to catch a bus to school?

 

FLYNN:   Yeah.

 

DECLAN:  Yeah!  You have gone quiet. You have gone dark. Hat up, Flynn. Hat up. Hat up.

 

 

JENNY BROCKIE:   I think he just got sick of being filmed myself.

 

JENNI RIGBY: That was us about 25 minutes of sitting on a chair talking with Declan, he was a bit past it at the end.

 

JENNY BROCKIE:   Yeah, I think he probably was. How old is Flynn?

 

JENNI RIGBY: Flynn is 12.

 

JENNY BROCKIE:   And when did you first realise he had health problems after the premature birth?

 

JENNI RIGBY: Yeah, well at about three weeks of age in the NICU they were very concerned about hydrocephalies, he had grade 3 bleed and they were waiting…

 

JENNY BROCKIE:   In the brain?

 

JENNI RIGBY: Yes, he was in there for 112 days and then when we took him home he was, you know, he was feeding, he was feeding from a bottle, he was breathing without oxygen, he was doing okay. We took him home, he crawled at about ten months, walked at about fourteen months corrected. Most of his gross motor skills progressed, they were a little bit delayed but not too bad, but he didn't gain speech and later we then had a lot of scans and things done and it showed lesions on the cerebellum and brain injury.

 

JENNY BROCKIE:   And how much do you know now that he's twelve about his even longer term health?

 

JENNI RIGBY: Well, he's, I mean health wise he's very fit and healthy. His long term independence, we have a lot more home now for that, he has come a long way. We actually took him overseas for stem cell treatment and his very slow progress jumped.

 

JENNY BROCKIE:  In what area did it jump?

 

JENNI RIGBY: Oh particularly speech, he wasn't saying a word at all before that, he was nine, but he will now speak in very long sentences, especially about what he's interested in.

 

JENNY BROCKIE:   What do you think about this discussion we've been having tonight?

 

JENNI RIGBY: Yes, it's a very personal thing.  I think you really need to think but we are very happy that we said to save Flynn because he, even though he has his challenges, he's a very loving, affectionate, friendly little boy and he's brought us really so much joy, along with all the challenges. But we think…did you want to say something?

 

FRAZER RIGBY:  No, you're doing a great job.

 

JENNI RIGBY: I was going to say we really think without probably $200,000 worth of money spent on Flynn, some our own and some through fund raising, he would not be where he is today. So really we need to then in this country give more support and more medical back-up to help these children have a better quality of life.

 

JENNY BROCKIE:   Hollie, I just wanted to ask you about what you think about what you've heard tonight as well because I know that your first baby Cade was born at 24 weeks and six days. He had a brain bleed after birth, didn't he?

 

HOLLIE REYNOLDS:  Yeah.

 

JENNY BROCKIE:   And you had to make a big decision?

 

HOLLIE REYNOLDS: We did. We had a grade 3 on one side and a grade 4 on the other so obviously been given that…

 

JENNY BROCKIE:   So that's serious?

 

HOLLIE REYNOLDS: That's very serious, yeah. We had eight days with Cade actually in the NICU, so we had quite some time and you know, we went through that honeymoon phase where he was doing really great, but yes, it's when they done the brain scan on day five that we were told, you know, the worst news possible. But I looked at quality of life and was he going to be happy? What happens if he was going to be in pain? Could he communicate that to me? That was one of my biggest things and you know, society today is just so cruel and judgmental and another worry was what if he's in a, you know, out at a shopping centre with a carer, say he had survived and you know, made it into his 20s or something like that and he couldn't feed himself, and I just think people are so nasty and you know, still to this day we take things for granted like brushing our teeth. You know, they couldn't tell us what disabilities he would have ended up with but it would have about been a large amount.

 

JENNY BROCKIE:   And you have a son now?

 

HOLLIE REYNOLDS:  Yes, we have a nearly eight month old Ryllie who almost came into the world actually at 26 weeks.

 

JENNY BROCKIE:   And he was born at 34 weeks?

 

HOLLIE REYNOLDS:  Yeah, I managed to keep him, cook him.

 

JENNY BROCKIE:   That must have been a relief?

 

HOLLIE REYNOLDS:  A massive relief.

 

JENNY BROCKIE:   Theresa, you've also had a baby since, a baby boy since having Stella?

 

THERESA MILOSESKI:  I do, I have an almost two year old, he was born, I was told I wouldn't be able to conceive naturally at my age but I actually did conceive.

 

JENNY BROCKIE:   How old were you?

 

THERESA MILOSESKI:  44, big shock to the system.

 

JENNY BROCKIE:   And how old is Sam now?

 

THERESA MILOSESKI:  He's almost two, two this month, yeah.

 

JENNY BROCKIE:   And he wasn't premature, Sam?

 

THERESA MILOSESKI:  He wasn't, oh, one day, 36 plus 6 I think, I don't think you can call that premature.

 

JENNY BROCKIE:   And how is Stella going?

 

THERESA MILOSESKI:  Stella's doing really good.

 

JENNY BROCKIE:   Does she have any health problems?

 

THERESA MILOSESKI:  She has chronic lung disease and that does see us in hospital.  She's actually just been in hospital a couple of days ago with her lungs but she's remarkably resilient and you know, she responds to medication and she, yeah, she…

 

JENNY BROCKIE:   There she is, she's a good painter too?

 

THERESA MILOSESKI:  That was her painting in the Starlight room, yeah.  No, she's and yeah, we went down the path of speech as well because you know, there was speech delay. She now, I can't shut her up, she just, she's full on, she's great, she's, you know, she's doing well.

 

JENNY BROCKIE:   Could we be doing more to prevent premature births, Sue, do you think?

 

PROFESSOR SUE WALKER:  Well people get sick of hearing about not smoking and so forth but it does increase your risk of pre-term birth so quitting or cutting back on smoking, you know,  prior to and in early pregnancy. Reducing the chance of multiple pregnancy, because multiple birth is such a huge risk factor for pre-term birth. And there are screening tests that we do during pregnancy that can sometimes identify women who are at high risk of pre-term birth.  So women who are found to have a short cervix or women who've had a past history of pre-term birth, we've heard about progesterone and that this can reduce your chance of having a further spontaneous pre-term birth by perhaps up to 50 percent.  And although it's fascinating to continue to talk about 23, 22, 21, will there be an artificial womb, there's no womb greater than the one that we've got and as important as it always is to have ambulances at the bottom of the cliff, I guess the research that needs to be done is the things that will keep people well away from the edge. I think we've heard tonight the tragic stories, the problem of not enough time, the huge decisions that families have to make and when they're trying to make the decision, not just about a baby but a child who will kick a ball and read a book and a teenager who will be smarter than them and an adult who will be independent and an adult that one day we can safely predecease.

 

JENNY BROCKIE:   I guess the other question is how far should we go, you know, you said 23, 22, 21, artificial womb. How far should we go?    Craig?

 

ASSOCIATE PROFESSOR CRAIG PENNELL:  I think it's unlikely that we will get much lower.

 

JENNY BROCKIE:   You think it's unlikely?

 

ASSOCIATE PROFESSOR CRAIG PENNELL: I think it's unlikely.

 

JENNY BROCKIE:   Why?

 

ASSOCIATE PROFESSOR CRAIG PENNELL: Well even in very proactive places, and Perth is one of the more proactive groups, there have been ten 22 week survivors in the last twenty years so these are very, very small numbers.

 

JENNY BROCKIE:   How do the rest of you feel now, reflecting back with a bit of time on the decisions and the way they were made. Anyone like to comment on that?

 

LESLIE POGSON:   I sort of feel comfortable I guess the best I can say. I think to me there was one piece of information that I sort of still hang my hat on, just that the hospital said that they'd never had a baby survive at Max's age and that is what I hang my hat on and  feel comfortable.

 

JANELLE MORAN:  We didn't have a lot in our favour.

 

JENNY BROCKIE:   You didn't have time on your side?

 

JANELLE MORAN:  No.  But having said that, yes, he died but we didn't have to watch him suffer and he was held, he was held and he was warm and he was loved for every minute of his life and that's special experience, you know, that we will always hold in our heart and he was just hours.

 

JENNY BROCKIE:   Hollie?

 

HOLLIE REYNOLDS:  Yeah, I think that time was a big factor as well because when I presented to the hospital they didn't nowhere near suspect that I was going to be in labour. Had we picked up a little bit earlier maybe we could have had the steroid shots sooner and that's what makes the decision.  No regret but you do live with the constant guilt every day. You constantly say what if? What if we did have that bit of extra time would we have had to make the decision to set Cade free and, yeah, time is of the essence.

 

JENNY BROCKIE:   Jenni and Frazer, what about you?

 

FRAZER RIGBY:   I think I'm speaking on behalf of Jenni and myself, the decisions we made, we wouldn't, we would not go back on that at all. You know, there's no way we could have a life without our little fellow, Flynn, he gives us so much joy and our siblings so much joy and,  you know, another positive out of that is that so many other people gain so much from him and him being around them. So it's just a wonderful thing that we've got him. We're so lucky.

 

JENNY BROCKIE:  Okay, we are going to have to leave it there. I want to thank you all very, very much for joining us tonight and for sharing such personal stories, really do appreciate it and that is all we have time for here but let's keep talking about this on social media.  Thanks everybody very much, thank you.