Winner of the 2019 ACTA Consumer Involvement Award

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No official photos as yet, but for 3 years in a row, a neonatal trial has won an award at the Australian Clinical Trials Alliance (ACTA) Annual Trial of the Year Awards!

Every year, 20 May is International Clinical Trials Day and as part of the celebrations ACTA held its fourth annual Awards celebration, this year at the Royal Children’s Hospital in Melbourne. For the first time, a new award was added to the list – the Consumer Involvement Award.

This was established to recognise and celebrate the outstanding achievements of ACTA members who advance clinical practice and save or improve the lives of patients every year through consumer involvement, above and beyond participation, in investigator-driven clinical trials.

It was such an honour for me to be in the room to accept the inaugural Consumer Involvement award for the TORPIDO 30/60 Trial, a trial which aims to determine which initial concentration of oxygen (30% or 60%) should be given to preterm babies in the delivery room.

Why was consumer involvement in TORPIDO 30/60 so important?

The moments before the birth of a premature baby and the minutes, hours, days and weeks after their early delivery are some of the scariest and darkest days of a parent’s life. Trust me, I know, I’ve been through it 3 times.

This is also usually the time that parents may be approached to enrol their baby in a clinical trial and I can tell you, not knowing what I now know, had we been approached at the time, we probably would have said no.

The experiences of my sons’ early births was the catalyst for the creation of Miracle Babies Foundation nearly 15 years ago and in that time I have since learnt the vital importance of clinical trials and I am now so grateful to the parents before me who did say yes to taking part in trials and helped shape my sons' care.

To my astonishment, I’ve also learnt that it sometimes takes years to recruit enough babies into a clinical trial to make it scientifically valid - even if the trial asks a question as simple as “Should preterm babies breathe high or low concentrations of oxygen straight after birth?”

Even worse, some trials, like the original 2014 TORPIDO trial, are abandoned because too few babies are recruited, even though the answer might save thousands of preterm babies worldwide.

Gaining parents’ permission for a delivery room trial before or at birth is often not possible nor is it always appropriate. Instead a research team might need to get hundreds of signatures from parents in early pregnancy for each baby who is actually born preterm and is eligible. This is not feasible either.

Last year, I was asked to partner with the TORPIDO research team, co-chaired by Professor Ju Lee Oei of the University of New South Wales and Professor William Tarnow-Mordi, University of Sydney and supported by Dr Javeed Travadi and Professor Ian Wright, University of Newcastle, NSW. We approached and presented to the Hunter New England Research Ethics Committee. Together, we followed the National Health and Medical Research Council (NHMRC) guidelines on waiver of consent for research that we felt could not be done any other way.*

When I spoke to other mothers within our organisation, it truly seemed to be a no-brainer.

The two concentrations of oxygen being compared in the new TORPIDO 30/60 trial are already within current recommended practice, so they pose no risk compared with usual care. How can they if they are part of the spectrum of usual care?

TORPIDO3060

And yet, this question of which starting concentration of oxygen is better, is a question that hasn’t been answered for 30 years, on treatments that are already happening. How scary for a parent to know this? How can we not get the answer?

The Hunter New England Ethics Committee listened to me as I presented the consumer voice on behalf of the TORPIDO 30/60 research team and unanimously agreed to our proposal for waiver of consent. This means that all eligible babies can now benefit by entering the study, including those born at night, on weekends, or in emergencies - who would have otherwise been missed.

It’s a huge win for improving quality of care and a huge win for families.

Working with consumers in this way means looking for ways to collaborate in trials from the very beginning and not just at the end when needing to gain consent.

Professor William Tarnow-Mordi comments “There is now clear evidence that, on average, taking part in a Phase III trial (i.e. large trials that test treatments which have already been through smaller Phase II trials) is associated with higher survival and better outcomes than having established care outside the Phase III trial. The evidence for this is summarised in an article in Nature in 2013.**

We will make sure that notices about the trial are displayed in antenatal clinics and neonatal units and that neonatal staff explain the trial to parents after babies are admitted for neonatal care.  Also, we will seek parents' permission for the use of secondary data and for childhood follow up."

I thank ACTA on the creation of this award. It is an important step forward and this is an incredible acknowledgement of the impact of Miracle Babies Foundation and the parent voice. I look forward to a continued partnership between Miracle Babies Foundation and researchers in collaboration because I get to see firsthand the impact it is making.

It’s not lip service.

It’s not token.

It is true collaboration.

ALPHA Collaboration

And I would like to see more community awareness on the importance of trials so that two things can happen:

1. Research is completely embedded into clinical practice – as advocated by the ALPHA Collaboration*** and

2. One of the first questions patients will ask their doctor or nurse is ‘Are there any trials I can join?’


Official Press Release: http://www.clinicaltrialsalliance.org.au/latest-news/trial-of-the-year-awards

References:

*   National Health and Medical Research Council, Australian Research Council, Australian Vice-Chancellors’ Committee. National Statement on Ethical Conduct in Human Research. Canberra 2007. (Updated May 2015). Canberra.

**  Djulbegovic B, Kumar A, Glasziou P, Miladinovic B, Chalmers I. Medical research: Trial unpredictability yields predictable therapy gains. Nature 2013;500:395-6.

*** NHMRC Clinical Trials Centre, University of Sydney. Saving millions more lives through megatrials; Introducing the ALPHA Collaboration. https://www.youtube.com/watch?v=oy3J6iZzOfE accessed 5 July 2018.

The rights of parents take a front seat - New Global Standards for Newborn Health

I am often asked about my experience of having premature babies and the rollercoaster ride of what a journey like that looks like. People are curious about the delivery and although I can now recount a lot of detail, at the time, emotionally, I was on auto pilot. Shock has a special way of protecting you from the horror that is unfolding. Delivering a baby weeks before it is due does not bring with it the moments of happiness and joy or waiting to hear that first cry like you had planned for. Our room was quiet, people were busy and then those busy people and my baby were gone, headed immediately for the Neonatal Intensive Care Unit (NICU).

For me, probably one of the most emotional days during that time was discharge day- not my baby's, mine. Three days after giving birth I was asked to leave the hospital because

there was nothing wrong with m and they needed the bed. It might sound crazy now but I really did not understand what they were asking of me. Leave the hospital? Not stay here with him? Leave my baby? Absolutely, no-one along the way, not once during my 5 week hospital stay before having him or in the first 2 days after he was born, did one person mention to me that I would be sent home. And it never, in any way, occurred to me that I would have to. And sent home to what? My baby was here. I was already new at this (being a mother) and what kind of mother was I if I was to leave him behind? The strange thing was that the nurses were genuinely surprised by my reaction, even trying to convince me that I would be more comfortable at home. Really? More comfortable without my baby? More comfortable being in an empty house? More comfortable travelling back and forth each day while my stitches were still healing? More comfortable trying to establish a breastmilk supply and express every three hours without being near my baby? There was no comfort in that. And I actually did not care about being comfortable, I cared that my baby was upstairs in the NICU on machines while I was stuck in maternity surrounded by mothers who had their babies with them. I hated being that far away from him and I hated that it was considered normal and even encouraged to leave.

This was more than 16 years ago and it is beyond comprehension that it is still an expectation of families of premature and sick babies across Australia. These parents should have the right and the ability to remain with their babies. Especially when research shows that this reduces postnatal depression, increases parental confidence and has proven benefits for babies, such as increased weight gain, lower infections and shorter hospital stays. Knowing this, why is it still the norm to be asking parents to leave?

Walk over to the Paediatric Ward and you'll see a different story. In a paediatric ward, you are almost frowned upon if you are to leave your child, trust me, I have been there, you are expected to stay, and stay the whole time. And yet for a newborn baby, you are told to go? Why is this? And where is the care for the mother as she heals from giving birth and tries to establish a milk supply which research heavily shows is crucial for a premature baby's survival and outcomes?

Also following a full term birth, new mothers are able to have 3-5 days in the hospital environment to provide fulltime care for their baby under the full support of medical and nursing professionals, however, with a premature or sick baby, a baby can be discharged after a long hospital stay without either parent having been the fulltime primary carer at any stage. And some of these babies go home on oxygen or being tube feed. Why don't these mothers have the same rights as those who have full term, uncomplicated deliveries?

How do we also protect families who have been transferred into intensive care units from rural areas or families whose newborn baby is critical and dying? How is 24 hour parental involvement not considered part of routine care?

Miracle Babies Foundation is the leading Australian organisation representing the interests of families who have birthed a premature or sick baby. Recently, the Foundation hosted the consumer consultation during the development of the current version of the Australian Healthcare Facility Guidelines (AHFG) for Neonatal Units. The AHFG are clear that neonatal units must be developed with consideration of models of care, including parent accommodation rooms and importantly, families must be welcomed as partners of their baby's care within the Neonatal Unit.

This year the needs of families have been further addressed in the European Standards for Newborn Health. The Standards can the found at: https://newborn-health-standards.org

Expert clinicians in partnership with the European Foundation for the Care of Newborn Infants (EFCNI) developed the Standards. The trans disciplinary and international composition of the authors has set new benchmarks for the care of newborn babies and these standards are truly patient and parent focused. The document questions existing structures, identifies service gaps and, if adopted, will advance national health care systems.

The European Standards highlights gaps within Australia including Hospital Admission Policies that preclude couplet care - there should be facilities that allow mother's medical care to be alongside with that of her infants to avoid separation and, lack of provisions to allow parents to be continually present and involved in the care of their infant.

These needs aren't part of a wish list - the long-term health and economic benefits are indisputable and the legal context is clear. The United Nations Convention on the Rights of the Child indicates that "the child shall have the right from birth... to be cared for by his or her parents." (Article7) and that "parties shall ensure that a child shall not be separated from his or her parents against their will" (Article 9).

Miracle Babies Foundation is one of the 108 international healthcare societies and 50 parent organisations that endorse the European Standards for Newborn Health. The Foundation is also calling on the Royal Australia and New Zealand College of Physicians to endorse these Standards and to support our call for all Parent Organisations, Professional Colleges and Societies, Hospitals and all levels of government to also endorse these standards.

Parents should have continuous access to their baby and should be supported to remain with their baby throughout their hospital stay. It must be guaranteed that as neonatal units undergo rebuilds, they are designed so that every baby exercises their right to be cared for by their parent and for every parent to care for their baby.

Not only will supporting these standards lead to reduced healthcare costs, but more significantly, they will improve clinically important outcomes such as growth, serious infection and gut and lung diseases in our babies, increase breastfeeding rates and improve parental mental and emotional health.

It is vital that we move to a place where mother's discharge day and baby's discharge day are no longer separate and instead are the exact same day.

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Click here to have your say on being separated from your baby during their time in a Neonatal Intensive Care Unit: https://www.surveymonkey.com/r/V8HXCGX

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Originally published at www.miraclebabies.org.au

It's finally here! The Australian Red Cross Blood Service Milk Bank

In 2012, I was invited to speak at a 3 day neonatal medical conference in Chicago. More than 1200 delegates were present representing over 900 Neonatal Intensive Care Units (NICUs) from around the world.

I was only one of two parents invited to speak and as is often the case at such conferences, I spent time listening to many of the presentations.  Being of a medical nature, some of the content can be out of my league, however, one of the things that struck me was that over and over, there was an underlying theme across the talks of the differences in outcomes for premature babies on breast milk and those on formula. What I was taking away from these doctors and researchers, and these are my own words, was that for extremely early and sick babies, breast milk acted more like a medicine than a food. The simple fact was (and still is) that premature babies do better on breast milk than formula. It seemed so evident. Breast milk, particularly for preterm babies, could reduce the risk of complications (some which can lead to death), increase immunity, lower infections and is easier for their tiny and immature guts to process.   

At one point, I leaned back and whispered to the Professor beside me, “so why isn’t every baby in a NICU given breast milk?”  He looked at me. His eyes said everything. The question didn’t need an answer and while I may have been hearing this information, in this way, for the first time, he wasn’t.

Yes, as the mother of three preterm babies, I was told of the importance of my breast milk, ‘liquid gold’ as it was described, and I was given every support possible to establish my supply. But what happens when you can’t establish that supply? What happens when you are sick or in intensive care too? What happens when you are asking for your body to do something that it is not supposed to do for another few months? What happens when you are trying to feed more than one sick baby? What happens when you are in emotional distress? And, what if you have to do it all without your baby with you because it is inside a humidicrib fighting for survival?

From personal experience, I can share that hand and then machine expressing to establish and supply milk for your baby is hard. Bloody hard. Your body is supposed to respond to a baby suckling, not mechanics. I think for me, in those first few days, more tears were shed than drops of milk collected. I already felt so much sadness and guilt for not being able to keep my baby safe and inside me longer, that failing at this too was heartbreaking. I didn’t want him on formula, that would never have been my choice, but he needed to eat and I had no milk yet. And as the hospital had no access to donor milk, formula was the only option.

And this is the case at most NICUs in Australia. Mother’s own milk is given first and when this is not available, the baby is given formula, even when the known truth is, for better outcomes, the options should be mothers own milk and when not available, donor milk. For premature babies, formula needs to be taken out of the equation.

Melinda Cruz Milk Bank Blood Service

Two years ago, I got a goose bump moment when I was invited onto a new project. The Australian Red Cross Blood Service were exploring the possibility of establishing a milk bank and wanted to know if I would join their Clinical Advisory Board. It was a big yes, I could not have been more excited or prepared. Finally, there was going to be a solution to support every mother’s effort to feed her sick and early baby or babies.

I sat alongside the Red Cross Blood Service team and the Heads and key staff from some of our NICUs. I confirmed the unwavering support of Miracle Babies Foundation and I anticipated that this service would quickly acquire an army of parental support for both donors and the families of the babies that would receive the donated milk.    

Melinda Cruz Milk Bank

This week, all the behind the scenes hard work has paid off for South Australia’s most vulnerable miracle babies with the official launch of the Australian Red Cross Blood Service Milk Bank which will supply pasteurised donor breast milk to The Women’s and Children’s Hospital (WCH) and Flinders Medical Centre (FMC) in Adelaide.

With this launch, I have goosebumps all over again and it is just the beginning with plans to continue this service for more families across Australia in the near future.

I know how I felt asking that question in that conference all those years ago and I know what it would have meant to me to have this option as I cried and tried desperately to make my milk come for my little ones. Congratulations to all involved. It is hands down one of the most important commitments health can give our earliest and sickest babies and their parents.


For more information on the Milk Bank visit www.milkbank.com.au and for family support visit www.miraclebabies.org.au 


 Official Release: https://www.donateblood.com.au/milk-bank-media

MILK BANK FOR PREMATURE BABIES

TUESDAY 11TH SEP 2018

Melinda Cruz Milk Bank 2

South Australia’s most vulnerable babies will have access to pasteurised donor breast milk through a new partnership between SA Health and the Australian Red Cross Blood Service.

Minister for Health and Wellbeing Stephen Wade said the milk bank is an exciting first for South Australian mothers and babies.

“I am delighted to announce the start of this important initiative that will see our community’s smallest babies having access to pasteurised donor breast milk delivered straight to the neonatal nursery,” Minister Wade said.

“Supporting families and their babies at such a critical time will strengthen our community as a whole.

“We are committed to ensuring every South Australian gets the best possible start in life, and services like these are invaluable.”

The Women’s and Children’s Hospital (WCH) and Flinders Medical Centre (FMC) will become the first neonatal nurseries in the country to utilise the Milk Bank by the Australian Red Cross Blood Service, providing pasteurised donor breast milk to preterm babies in their care.

Shelly Park, Chief Executive of the Australian Red Cross Blood Service, said she was honoured the organisation could make a greater contribution to healthcare in this way. 

“Our Milk Bank will mean neonatal nurseries in South Australia will be able to order pasteurised breast milk on demand, just as they currently do for blood, to help these premature babies.  

“The Milk Bank will screen donors, collect, process and test the donated breast milk, then track and distribute this precious resource,” Ms Park said.

“We couldn’t be prouder to apply our leading-edge research, skills and expertise to human milk banking to potentially improve the health outcomes of so many at-risk babies. 

“We’ve demonstrated our unrivalled approach to safety and quality when it comes to collecting, testing, processing, storing and distributing blood products. 

“We value our partnership with the South Australian Government who have not only supported the establishment of our Milk Bank, but who are collaborating with us in the delivery of this innovative project.”

Jennifer Gillis, a WCH Neonatal Nursing/Midwife Educator, said the service will be invaluable for preterm babies.

“While a mother’s own milk is the best, many babies born prematurely in Australia do not have access to a sufficient supply of their mother’s own breast milk,” Ms Gillis said.
“Breastmilk increases immunity, is high in nutrients and is easy for their immature digestive systems to process.

“It can also reduce the risk of complications in premature babies. 

“Should supply of a mother’s own breast milk be insufficient, pasteurised donor breast milk is the preferred alternative.”

For more information on the Milk Bank visit www.milkbank.com.au

The Award for Being a Woman Part 2

Three years ago, I wrote an article titled ‘The Award for Being a Woman’ after I was nominated for NSW Woman of the Year. You can read it here. What propelled me to write that article was a surprising and eye-opening conversation with my three then-pre-teen boys about their confusion at the existence of a “woman’s” award. And, the discomfort I didn’t realise I would experience during the award ceremony.

Since then, I have quietly chosen to not accept any nomination for a “woman’s” award. It is a not a huge stance, I am not waving a flag and one day I may change my mind. But for now, it is just personal decision to want to be judged on an even footing for my work and my impact and because I know my boys are still watching.  

In 2011, I was nominated for and won the EY Social Entrepreneur Of The Year award. It is hands down my proudest honour received to date. It completely changed the trajectory of Miracle Babies Foundation, the charity I had founded and had a huge effect on me personally.   

That conversation with my sons happened 4 years after I had won the EY award and one of the things I have really grown to value about being involved in that award program is the fact that it is not gender specific. I was on a level playing field, being judged solely on what I was outputting personally and professionally.

Since my win, I have attended the EY award ceremonies at both the Regional and National levels every year and for the second year in a row, I have been invited to be a regional judge. Also, for the second year in a row the awareness of female nominees, or rather lack of, has been brought to my attention.

Stepping in as the Chair of Judges at this year's EY Entrepreneur Of The Year (Eastern Region) Awards

Stepping in as the Chair of Judges at this year's EY Entrepreneur Of The Year (Eastern Region) Awards

In the Eastern Region this year, only 2 of the 14 phenomenal companies nominated were founded or operated by female entrepreneurs. At the award ceremony held on 3 August, I was asked to address the audience, stepping in for our Chair of Judges. I explained the vigorous process the nominees experience, the judging criteria, and that the six person Judging Panel (which included 3 women) truly had the difficult task of choosing great from great. When the national finalists were announced, there were no female winners.

This has been met with public and private comments of disappointment spoken to me personally and on some of my social media posts about the event. I get it. I do. And knowing the process of this particular award from both sides, as a winner and a judge, I feel compelled to defend it. Again, the fact that it doesn’t matter if you are male or female is one of the reasons I am associated with and advocate for this award.

I won’t lie, every year, when the nominees are announced I scan the list of names hoping to see women there and a lot of them. And every year I feel just as disappointed as anyone else when there are only a couple compared to the number of men.

But it is easy to express opinion after the results are out. This difference needs to be addressed long before, at the nomination stage, because the unfortunate truth is, year after year, women simply fail to self-nominate.  

Why? And how do we change this?

How do we help women with sizeable businesses to nominate or accept nominations? How do we understand the reasons they are not? Are they too busy, are they not willing to take on more than they already are, do they believe they don’t stack up or are they uncomfortable with accolades?

Research has shown that when compared to men, many women can be reluctant to shine a light on themselves. They struggle more to self-advocate and self-promote. And I wonder if is this more so the case when the awards are not a “woman’s” only award?

Win or lose, I know firsthand, that just being nominated is an incredible platform for any entrepreneur and their business and one that should be taken advantage of. It is certainly something I hope the incredible female entrepreneurs nominated this year are doing.

Awards and nominations like this can;

  • shine a spotlight on your business and put you in front on an audience you may not normally have access to
  • give you insights into your business in a way you wouldn’t otherwise take the time to explore
  • boost your confidence and credibility and may inspire you to scale and take risks
  • be an incredible marketing tool which can build reputation and validate capability
  • build comradery and energise your team

This year, I have also been asked to judge this award at the National stage of the competition, where the 2018 EY Australian Entrepreneur Of The Year will be named. That winner will then move on to compete in Monaco in 2019 for the World title. I have not seen the finalists list yet. My guess is that it will not have the number of women I know people, including myself, are hoping for.

Instead, what I can hope for is that more women will watch, read and be inspired to take part next year. Please self-nominate and I challenge anyone reading this to nominate the phenomenal female entrepreneurs they know and encourage them to say yes to the opportunity.  Ladies, we are ready for you!

Saving more premature babies

Could Point of Care Trials be one solution?

Globally, approximately 1 in 10 babies are born premature with complications of prematurity being the number one cause of death in children under 5 years of age.

Despite the continuing advancement at this crucial stage, there are still many unanswered questions on differences in care given to these critically ill and early babies.

To address the uncertainties in neonatal care, high quality, large clinical trials are needed.

As the mother of 3 premature babies, I understand that the care my babies received was available as a result of previous research. However, considering research on my own sick baby at the time of their birth and in the days that followed was a very emotional process. And for staff, research under intensive care situations is often seen as an add-on rather than a routine aspect of standard care. Performing trials under these conditions can be expensive, burdensome to undertake, hard to recruit and can take many years to complete.

Since 2012, I have had the immense privilege, as a consumer, to be included as an Associate Investigator alongside researchers on a number of Australian and international neonatal trials. Knowing the importance of trials and the challenges to get results quickly into practice, at this year’s Perinatal Society of Australia and New Zealand (PSANZ) Annual Congress, researchers asked that very question, ‘How do we embed research into clinical practice so that research becomes a routine aspect of standard care rather than an add-on?’

Could it possible that there is some reluctance to normalise research because medicine is a fact-based profession and the perceived implication that the search for improvement is equal to knowledge lacking?

I don’t think so …. and imagine the number of babies this could save.

One solution to this could be Point of Care Trials (PoCTs). Like conventional Randomised Controlled Trials (RCTs), Point of Care Trials still involve the randomisation of babies but they utilise data that is already collected in routine practice to answer clinical questions.

So, advancing healthcare with data already collected? It almost begs to ask, why hasn’t this been happening all along?

Worldwide, clinicians as well as parents and families of newborns are overwhelming supportive of this approach. PoCTs offers a simpler and more efficient way of reducing uncertainties and could potentially speed up the process of advancing healthcare.

Already underway in the UK is the WHEAT trial. It is the first ever neonatal multi-site registry or point of care trial with proposals underway for Australia, New Zealand and Canada to join.

WHEAT (WithHolding or continuing Enteral feeds Around blood Transfusion) aims to see if withholding milk feeds around blood transfusions can reduce Necrotising Enterocolitis (NEC), a very serious gastrointestinal inflammatory disease that affects 1 in 20 very preterm babies. About 1 in 3 babies with NEC die or need surgery and many survivors have long-term health problems like poor growth and developmental delay.

It is currently not known if continuing or stopping feeds during blood transfusions is better to reduce NEC and a survey in over 200 neonatal units worldwide confirms that both practices are common, often within the same neonatal care unit.

As an innovative international collaboration that will use routine data already recorded by doctors and nurses in the daily care of thousands of babies around the world, the proposed extension of the UK WHEAT aims to answer this question by enrolling over 10,000 preterm babies of less than 30 weeks gestation from Europe, North and South America, Africa, Asia, Australia and New Zealand.

And as a Point of Care Trial, it also aims to show that it can run alongside other trials and alongside standard care with almost no extra work and with the potential to make a lifesaving difference to so many precious preterm babies.

You can have your say by completing a 5 minute survey on your views about the WHEAT Trial here (no personal details are required)

Dr Chris Gale and Professor Neena Modi discuss the UK WHEAT trial and describe how neonatal point of care trials can simplify neonatal research:

Originally published at www.thriveglobal.com

What's your Secret?

A few day ago, at the hairdressers, two ladies I’d never met commented on my long hair saying "Oh, to be young again and have such long hair". I laughed and said “Thank you but I’m not that young”, which prompted them to scoff and then want to guess my age. I am always up for that game. It can be amusing but to my surprise, they placed me nearly 15 years younger than what I really am. What? I laughed saying “Nooo, I wish!” When they learnt my age, the looks on their faces was priceless. Very quickly they shot questions at me “How?” “What nationality are you?” “Have you got kids?” “What’s your secret?” Still laughing, I shrugged “I don’t know, Italian, I have 3 and no idea”

One of my hairdressers, someone I have known for years but don’t see very often overheard what was going on and stepped in. He said all excited with one hand in the air, “I’ll tell you exactly what her secret is – she is always happy! Seriously! I don’t know her very well (and he looked at me for confirmation, I nodded) but I know her well enough to know she has been through some pretty tough times. The thing is, you would never know because every time you see her she is smiling. Always smiling. That’s her secret. She’s happy”

He spoke and I listened but the sad truth was, the two ladies didn’t seem to care too much for his answer. They weren’t buying it at all but I was completely intrigued by his perspective of me. I've heard people describe me as happy before and it's a nice thing for people to pick up on. It made me smile. 

When I walked away, I kept thinking of his response. It's a cliché, isn’t it? The secret is to be happy. We hear it all the time. The difference is, and why I smiled, is that I know hands down, secretly inside, it is definitely a very conscious choice to live my life as happy as I can. It’s just that you can’t really openly share that you are ‘choosing happiness’ because like the two ladies in the salon, most people will roll their eyes at you. You just have to live it.

I wonder why? Is it too simplistic an answer? Do we believe it doesn’t work? Or does it feel like too much work to do it? Do we love drama that much? Do we expect people not to believe us? It’s all so strange to me.

And to be honest, he was right, I have gone through some tough times. Who hasn’t? Things that could really break a person, especially in the last two years, but what I have realised is that even though I couldn't stop the bad times happening, I had full control over how I chose to get through them. I want to be happy. I do. I want a happy life. No matter what. That feels natural to me. Smiling is fun. Laughing is fun. Being playful is fun. But I had to be willing to create an environment that allowed it. Abraham Hicks says, “the better you feel, the better life gets” and I've learnt that it’s true.

So, in the last couple of years, I have quietly become almost obsessed about removing my exposure to anything that is sad or negative when life throws me a hard time. I become conscious of everything from what I watch on television, to what music I listen to and even which people I hang out with. If it isn’t a comedy, something I can dance to or someone who can make me laugh, in that moment I’m not interested. I’m in survival mode. 

When I am going through tough or hurtful times, my priority becomes distracting myself from the parts of it I cannot control, and unlike some people would have you believe, choosing to feel happy through hard times does not mean you are in denial or that it is not happening or that it is not important. That’s all still true. You are just refusing to let those times own you. You are instead choosing to thrive.

Sadness breeds sadness and once you get on that train, the momentum of it can be hard to stop. The same though, goes for feeling happy. Happy breeds happy. And thank goodness, that momentum can be hard to slow down too. That’s the train I try to be on and be on as much as possible. And it does not minimise your situation or change what is happening if you chose to move through it as happy as possible. Ignore those people who try to make you believe that. I have had to learn to. And trust me, sometimes it is hard because they don't like it. Sometimes it doesn't serve their pain to see you happy. In the process, I have been told that I lacked empathy, was heartless, selfish, self righteous, cold, smug, you name it. It always hurt but I could not allow myself to stay in an unhappy place for them. It doesn't mean that I didn't have moments of uncontrollable pain or didn't shed an ocean of tears, it means that my life could simply get back on track quicker.

So I smile and I laugh and I am playful, way more than I am ever sad. Choosing happy has become a personal life strategy and I love that it gets noticed without needing to announce it. Even I would probably roll my eyes. I am happy to just live it. "The better you feel, the better life gets" is so true and life is meant to be fun. I want to never forget that. This is where most of the expansion and creation and magic seems to happen so it is where I want to choose to spend the majority of my life.  

And if in the process, it is somehow also helping me defy age a little, haha, it’s a win-win!  

Originially published at www.thriveglobal.com

The Power of a Moment

At a recent medical conference, I spotted a couple of rows in front of me a doctor who will forever have a special place in my heart. I see him often so it wasn’t rare to see him but my heart always fills when I do. I took a quick photo of the back of him and popped into my Instagram story, not thinking too much of it but was surprised by the beautiful messages it received.  

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This doctor and I first met just over 14 years ago, under very traumatic circumstances. I have seen him many times over the years, mainly through my work with Miracle Babies, and have many photos and selfies with him but he is such a humble and unassuming man that he always seems almost embarrassed by all the fuss.

But to me, he deserves every bit of fuss imaginable. He saved my son.  

When my second son Dillon was born, 13 weeks early, he was resuscitated and taken immediately to the Neonatal Intensive Care Unit (NICU). It happened fast and everything was uncertain. When I was well enough to make my way to where he was, there were so many people around him, the doctors and nurses who were working on him, that I couldn’t see him. They were putting in lines, doing everything they could to save him.

There was nothing I could do for my baby in that moment and I stood there in shock, seeing only the crowd of people focused on him. Then something happened that would stay with me forever. I will never, ever forget his doctor, this man, a man I had never met before, stopping what he was doing, looking up, finding my eyes and nodding before turning his attention back to the baby. It was quick and anybody in that room would have missed it but for such a brief second, he acknowledged me. He acknowledged me as that baby’s mother and it meant everything. Moments later we were ushered out of the unit into a quiet room and the next time I saw that doctor, it was to tell me that, for the moment, my baby was okay.   

I have spoken to him many times since about what that gesture meant to me and he shyly smiles and shrugs it off. That action may leave his memory but the impact on me will stay for a lifetime. In the chaos of what was going on it was calming, I had to trust him, my baby’s life was in his hands and it was acknowledgement that even though, in that moment I could not do anything for my son, I mattered.

Never underestimate the impact you can have on a moment.

Wait a minute! Delayed Cord Clamping Saves Premature Babies

Clamping the umbilical cord later saves preterm babies’ lives.

Clamping the umbilical cord later saves preterm babies’ lives.

Article: Delayed versus Immediate Cord Clamping in Preterm Infants | The New England Journal of Medicine

The lives of thousands of preterm babies could be saved by waiting 60 seconds before clamping the umbilical cord after birth instead of clamping it immediately, a new systematic review of evidence has revealed. 

To be published in the American Journal of Obstetrics and Gynecology, the review led by University of Sydney researchers, assessed morbidity and mortality outcomes from 18 trials comparing delayed versus immediate cord clamping in nearly 3,000 babies born before 37 weeks’ gestation. It found clear evidence that delayed clamping reduced hospital mortality by a third and is safe for mothers and pre-term infants.

The review also reported that delayed clamping reduced subsequent blood transfusions and increased neonatal hematocrit, confirming that placental transfusion occurred.

“This reports shows for the first time that simply clamping the cord 60 seconds after birth improves survival,” said the University of Sydney’s Professor William Tarnow-Mordi, senior author. “It confirms international guidelines recommending delayed clamping in all preterm babies who do not need immediate resuscitation.”

"We estimate that for every thousand preterm babies born ten weeks early, delayed clamping will save up to 100 additional lives compared with immediate clamping,” said the University of Sydney’s Associate Professor David Osborn, the review’s lead author and a neonatal specialist at Royal Prince Alfred Hospital. “This means that, worldwide, using delayed clamping instead of immediate clamping can be expected to save between 11,000 and 100,000 additional lives every year.”

The systematic review confirms new findings from the Australian Placental Transfusion Study, published in the New England Journal of Medicine, reporting that delayed clamping might reduce mortality at 36 weeks – tentative evidence that required confirmation by an updated review of all relevant trials.

The Australian Placental Transfusion Study enrolled 1,566 babies born over ten weeks early in 25 hospitals in seven countries. The authors reported a 6.4 percent mortality rate in the delayed clamping group compared to 9 percent mortality rate in the immediate clamping group (p=0.03 in unadjusted analyses; p=0.39 after post-hoc adjustment for multiple secondary outcomes).

The University of Sydney’s Professor Jonathan Morris, co-author of the Australian Placental Transfusion Study said: “This is so significant as it is such a simple technique, suitable for almost all preterm babies that helps saves lives”.

Parents who want to know more are encouraged to visit the NHMRC Clinical Trials Centre website at www.ctc.usyd.edu.au or Miracle Babies Foundation at www.miraclebabies.org.au for Frequently Asked Questions about the Australian Placental Transfusion Study. Parents in Australia who need support can contact Miracle Babies Foundation 24 hour helpline at 1300 622 243.

Co-author of the Australian Placental Transfusion Study, Professor Roger Soll of the University of Vermont College of Medicine, added “About 15 million babies are born before 37 weeks gestation annually and one million die. This procedure costs nothing and will make a difference to families worldwide."

These results were presented at the VON 2017 Annual Quality Congress, a gathering of the worldwide community of practice dedicated to improving the medical care of newborns where leading experts in neonatology and improvement science present about latest evidence and methods to implement evidence-based practices.

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About Vermont Oxford Network

Vermont Oxford Network (VON) is a worldwide community of health care professionals dedicated improving the quality and safety of medical care for newborn infants and their families through a coordinated program of research, education, and quality improvement. Members use confidential information from the world’s largest and most comprehensive databases of high-risk infant data to benchmark their practices and outcomes and identify areas for improvement. Teams from around the world address critical and complex challenges of newborn care with evidence-based quality improvement methods guided by VON expert faculty and resources. www.vtoxford.org
 
Downloadable File: Delayed Clamping Study Results

30 Stories of Inspiring Leaders doing something Extraordinary to Change our World

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This week I was sent one of the first copies of Emma Hogan's Inspired Kindness featuring 30 incredible stories of 'inspiring leaders doing something extraordinary to change our world' ... Such an honour to be included and to be amongst some of my favourites! (You'll find me on page 61).

Books can be purchased at www.rainbowjane.com and funds raised will go towards grants to support the next generation of game changers! More details at the bottom of this page and below is some of my interview with Emma about the work of Miracle Babies Foundation.

About Inspired Kindness

www.rainbowjane.com

Rainbow Jane is a small personally funded foundation that aims to create events and/or tell stories that inspire people to do something for themselves whilst giving back to worthy causes in communities, both in Australia, and overseas.

By purchasing an Inspired Kindness book, you are also ‘giving back’.

For every book sold, $50 will go towards the creation of a not-for-profit grant. The goal is to sell 1,000 books and create 5 x $10k grants that will be distributed (through an application process) to the next generation of people aiming to change our world. Click here for more information on the grants.

The book is $59.95 per copy (including shipping and admin) and $50 per copy for orders of 10 or more (yes, they waive the shipping and admin fees)

National Award for Neonatal Trial

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Last week was a wonderful week for clinical trials in Australia, particularly neonatal trials.

On Friday 20th May, the annual Clinical Trials 2017 National Tribute and Awards Ceremony was held by the Australian Clinical Trials Alliance (ACTA) at Royal Prince Alfred Hospital celebrating the outstanding achievements of Australian clinical trials and honouring the people who make them possible.

Presented by Hon. Greg Hunt MP, the Runner Up to the 2017 ACTA Trial of the Year was awarded to the BOOST II Trial - a randomised controlled trial to investigate the effect of two slightly different oxygen levels on the health of very premature infants.

Most very preterm babies need extra oxygen, because their lungs are immature. Too much oxygen may harm their eyes, (sometimes causing blindness) and too little reduces their chance of healthy survival. For 50 years, doctors and nurses have had no good evidence about the best level of oxygen for very preterm babies. Until recently, the accepted range was between 85-95% saturation.

BOOST II was led by the Interdisciplinary Maternal Perinatal Australasian Collaborative Trials (IMPACT) Network, and coordinated by the National Health and Medical Research Council (NHMRC) Clinical Trials centre to study this question in 1200 very preterm babies. It was one of five similar studies around the world – called the NeoPrOM Collaboration - designed to find out if aiming for lower (85-89%) or higher (91-95%) blood oxygen, both within the accepted range, improved healthy survival.

Parents of nearly 5,000 babies worldwide joined this unique effort - in Australia, NZ, UK, US, Canada and 10 other countries with 1,135 babies enrolled in BOOST II Australia.

This global collaboration showed that, for every 1000 very preterm children treated with oxygen, 28 more lives will be saved by aiming for 91-95% saturation instead of 85-89% - with no increase in blindness or disability.

“This evidence will save thousands of lives, at minimal cost,” commented BOOST II Australia co-ordinator, William Tarnow-Mordi, Director of Neonatal and Perinatal Trials, at the WINNER Centre, NHMRC Clinical Research Centre, University of Sydney. “It was made possible by the wholehearted support of parents and researchersand their collaborating teams – and by dedicated people like them all over Australia,” he added.

Although Australia’s population of 24 million is only 5% of the total population of 445 million of all five countries, BOOST II Australia enrolled 23% of all 4,965 infants in NeoPrOM.

This illustrates the strong, collaborative ethos of Australian trials research in contributing to groundbreaking evidence that will increase healthy life expectancy for millions of the world’s most vulnerable children, at minimal cost.

King Edward Memorial Hospital, Perth, was a major contributor to BOOST II Australia. Work is in progress to follow up the children in the study during early childhood.

As a parent of three preterm babies, I understand the incredible need for research and commend the valuable collaboration between researchers, doctors, nurses and the parents who said yes to their baby's participation. This study will have a huge global impact on newborn babies who are born very preterm and as parents, we understand that saying yes to a trial may not help our baby but may help future babies like ours.

I am immensely proud of Miracle Babies Foundation's small contribution to BOOST II and to the overall commitment to help change community culture so that one of the first questions future parents ask their doctor is ‘Are there any clinical trials I can join?'

Extra link : https://www.miraclebabies.org.au/health-professionals/research-articles/boost-ii-trial-media-release-and-parent-qas/

One of the proudest moments I've put into words

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I often thought when the time came, it would be really tough. Turns out, it is actually one of the proudest moments I’ve ever put into words.

After 12 years of leading Miracle Babies as its President (2005-2009) and then as CEO (2009-present), at the end of this month, the Miracle Month of May, I will move out of the CEO role and day to day running of the Foundation and transition up to a Board position.

Thinking back to 2005 and initiating the thought of some way to feel more connected and to help other families of premature babies, I never, ever had any concept of not only what Miracle Babies is today but also what it could be. I was simply a mum, devastated by my birth experiences and the way my children came into the world who wanted and needed to stay connected to other ‘miracle’ mothers to help me be okay and to give back to the hospital who gave me my beautiful babies to take home, turning us into a family. 

From that very first time when I approached the hospital with my idea, my life again changed. I was introduced to the most incredible and strong women I have ever met who listened to my thoughts and vision and with everything they had, made it their own. All women with different journeys, but all bonded together by a path we never ever would have chosen. I am so honoured by all of them.

Almost 12 years and here we are, with your help and the incredible belief of other miracle families, the medical community and our supporters, running the largest not for profit in Australia for families of premature and sick babies. The numbers remain overwhelming with more than 48,000 babies are born every year premature or sick. There is so much more to do.

The opportunities, adventures and experiences I’ve had in this role and the people I’ve met along the way are beyond anything I could have imagined and remain so special to me. Things like taking a small community group national, to sitting in the Premiers office, co-writing a song that’s available on iTunes, running the NY Marathon, speaking at international medical conferences, being part of research and becoming an honorary research associate at Sydney Uni, winning awards especially the EY National Social Entrepreneur of the Year, celebrating our 10 years at Luna Park, to becoming friends with some of my personal business idols. Too many amazing things to mention and some I hope to share over the coming weeks.

And while those moments remain incredible and I wish for more, I remain completely humbled by the families who trust us and let us into their lives at such a pivotal time. None of the accomplishments or experiences would have meant a thing without the moments when a mum simply says “Miracle Babies saved my life”. Our staff, our volunteers and supporters who make it all happen, every day changing such a heartbreaking time for families.

I am forever grateful for my 3 beautiful miracles who continue to thrive, they are my legacy and I am going to cherish the next 4 weeks. My hope is that you will continue to support Miracle Babies with me – we have a BIG campaign next week where your donation will be doubled that you MUST get behind - simply because our words from the beginning remain true …. “No one should have to go through this alone”  

I’m excited. I love my miracle family. Thank you for believing in me and my vision.

Let’s do May!

www.miraclebabies.org.au

Class Speech: A Growth Mindset & Positivity as seen by my 12 year old

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This is my 12 year old son Dillon. He is in his last year of Junior School and as an assessment, his grade was required to present a 3 minute speech to their class on a topic of their choice. The top 8 were then asked to present to both Years 5 & 6. Thinking his speech would be about basketball, his first love, I was surprised to hear he had decided to talk about success.

And even though he asked me to read over it, I was very conscious to not contribute as I didn't want to get in the way of his thoughts and his words, plus I was quietly fascinated to know what he would come up with. Although he was nervous up there, the content was a stand out amongst speeches about the weather or being a famous soccer player and he was asked if he would next share his speech to the entire staff at his K-12 College. I also asked if I could share it, so this is his speech, unedited and reproduced with his permission.

How do you know when you succeed? Is it the feeling? Is it when you accomplish? Is it when you help others? Is it when you bring joy? Or do you just know? The dictionary gives us the definition of success as .. The accomplishment of your aim or purpose, but it can be much, much more than that. To succeed, you must know two very important elements, having a Growth Mindset and Positivity. Having these two elements can change the way that you look at succeeding and at yourself in the future.

A simple explanation of having a Growth Mindset is that with lots of effort you can train your brain to get smarter and you believe all things are possible. You understand that effort is important and that working your brain can actually make it grow bigger and heavier. Having a Growth Mindset means you are curious. You have a knowing that your basic abilities can be developed from practice and learning. A Growth Mindset looks at setbacks as opportunities to learn and grow and is essential towards the way you look on success and how it impacts your future.

Having the wrong type of mindset can lead to being afraid of setbacks, challenges and effort which stops you from succeeding. You are afraid of and avoid making mistakes so as to not look dumb. Having a fixed mindset is when you think that how you are now and all your personality traits and skills are all you will have. Looking at yourself as nothing and not as talented as others can change the way you feel about yourself and who you will be in the future. It also can lead to depression.

Thinking a task is impossible and too hard can change the way you think about Positivity. Being negative can lead to problems in the mind and in the heart. Believing work and tasks are too difficult can take away the way you see yourself and how you succeed. Changing your attitude and thoughts into a positive way can make challenges easier and simpler. Giving a positive attitude towards work can help your mindset to function positive and preserve it in the future, as never giving up and always believing in yourself that you can do anything. As you think positive when working, it also makes it easier to produce quality work than when you are negative.

Here are 3 ways you can move towards having a Positive Growth Mindset:

  1. Find the positives in every situation, even the negatives ones. When you are in stormy and gloomy situations, try to find the rainbow and light. 

  2. Focus on what you want to happen, not what you do not want to happen.

  3. Always be grateful for every person or situation that comes to you. Remember, the wins are to be celebrated and the losses are lessons and opportunities to learn and grow.

The effects of having a fixed mindset and negativity can cause you not to achieve the goals you set for yourself.

On the other hand, having a Growth Mindset and being positive can result in success in your own eyes and feeling that you have accomplished your goal.

Some people think that success is if you are famous or have lots of money but you can think of success as accomplishing whatever it is that you want for yourself. So if for example, Olympians have to know what success is to them, for them to reach their goal. For example, many Olympians don’t see success as winning gold or coming first, more say success is reaching what they wanted, even coming last and completing the race can be success in their eyes.

Success is when you know how to have a Growth Mindset and Positivity, it is when you persevere through the tangled and tough times, being successful doesn’t come easy it takes a lot of faith, hard work, dedication, focus, and sacrifices like waking up early, but what is success?… Well it’s not up to me, what do you think success really is and how will you change your future?

Putting Your Hands Up for Miracles

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This is Eli

I first met Eli not long after he was discharged. He was so beautiful, so tiny, laying along his mum's lap with his head at her knees, still attached to tubes. My 3 boys, who were also all born premature, did not come home with tubes so I was in awe at the sight.

Eli is a fighter. He survived being born 15 weeks early, weighing an unimaginable 520 grams and spent the first 112 days of his life in a Neonatal Intensive Care Unit.

Like many babies born on the edge of viability he has endured surgeries, illness, endless appointments and hours and hours of therapy to help him thrive.

He is a modern day miracle but he is not alone. Every year in Australia 48,000 newborn babies require lifesaving help of a Neonatal Intensive Care Unit (NICU) or Special Care Nursery (SCN).

The heartbreaking experience affects the entire family unit and the trauma can remain long after going home… we see it everyday and the comforting news is that, working with health professionals, Miracle Babies is there throughout the entire journey from a threatened pregnancy, time in hospital, the transition to home and onward.

I didn't know it then, when meeting Eli and his mother, Naomi, that not only would she become one of Miracle Babies co-founders and change the lives of thousands but that she would also become one of my closest friends. At Miracle Babies Foundation, we share our personal journeys and that of our kids because we know it helps others.  We receive no government funding and all services and programs are offered free to families and hospitals right across Australia. 

This June, we are asking that you become part of our story by putting your Hands Up for Miracles with a one off, tax deductible donation. As little as $5 can make a huge impact on these tiny lives and their families.

It's easy to do. Learn more and donate at www.handsupformiracles.org.au

*Across June, I will be sharing photos of my boys early starts on instagramtwitter and facebook

The Other Diabetes - 2016 World Health Day

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There are many reasons why a baby may be born premature or sick but one that is not often talked about is diabetes and more specifically gestational diabetes - the development of the condition during the second half of your pregnancy.

Today is World Health Day, a global health awareness day with this year’s focus on the chronic disease (Type 1, Type 2 and gestational) which affects millions around the world. In Australia, between 5% and 10% of pregnant women will develop gestational diabetes.

As recalled by mum to miracle baby, Kenahdy (pictured):

“We had tried to fall pregnant for 3 years and at 21 weeks I was hospitalised for high blood pressure and protein in my urine. I was also diagnosed with gestational diabetes. At 38 weeks, we were induced.

Once born she was unresponsive, I remember the fear that came over me knowing that she wasn't breathing.

The next morning her breathing seemed better however her sugar levels were very low. She was lethargic and refusing to feed. My husband and I struggled to come to terms with how quickly this was all happening. She was then put into the NICU dependency unit as her levels were peaking and jaundice had also set in. Her little arms wouldn't allow a cannula in any longer and the IV was inserted through her belly button and then her scalp.

Emotionally, it was devastating for my husband and I. Just a few days short of 4 weeks, we were able to go home.”

Gestational diabetes is a condition of abnormally raised blood sugar levels (also called ‘glucose intolerance’ or ‘hyperglycaemia’) during pregnancy.

Typically, women with gestational diabetes have no warning signs but some may experience symptoms such as increased thirst, increased urination, tiredness, nausea and vomiting, bladder infections, yeast infections, sugar in their urine, blurred vision and mood changes.

Gestational diabetes is serious and detection is vital so it is common for all pregnant women in Australia to be offered a glucose test around 26-28 weeks of pregnancy. As it is a condition that occurs only during pregnancy, it is not the same as having pre-existing diabetes throughout a pregnancy with the condition usually disappearing once the baby is born. A history of gestational diabetes, however, can increase a woman’s and the baby’s risk of developing type 2 diabetes later in life.

The extra glucose in a mothers bloodstream crosses the placenta triggering the unborn baby's pancreas to make extra insulin. This can cause the baby to grow too big. Around 30% of women with gestational diabetes deliver larger than average babies and because of this, are more likely to require intervention during labour such as a caesarean birth. Other potential problems for the baby include birth defects, premature birth and jaundice during the first 28 days. Premature birth also puts a newborn at risk of both short term and long term health issues.

Ways you can help reduce your risk:

  • Check your risk of diabetes with your doctor and work together to build a plan that is right for you and your baby.

  • Manage your weight before falling pregnant and develop healthy eating habits you can take into your pregnancy.

  • Keep active. Exercising regularly before pregnant can help reduce your risk of developing gestational diabetes during pregnancy and once pregnant work with your doctors on an exercise plan that is safe for you and your baby.

  • Limit alcohol intake before falling pregnant, stopping altogether during pregnancy.

  • Quit smoking before falling pregnant. Smokers are twice as likely to develop diabetes as non-smokers.

  • Choosing to express and/or breastfeed your baby. It is now widely accepted that being breastfed helps protect babies from becoming overweight or obese later in life and breastfeeding can lower the risk of a mother with gestational diabetes of developing type 2 diabetes.

Not only will these help care for your unborn baby but it will also help take care of a very important person - their mother.  

World Health Day is a global health awareness day, sponsored by the World Health Organisation (WHO), acknowledged by various governments and non-government organisations, which are directly and indirectly involved with public health issues.

The theme for 2016 is Diabetes : There are 3 types of diabetes, type 1, type 2 and gestational. Diabetes results from elevated levels of blood glucose (blood sugar) and occurs when your pancreas does not produce enough insulin, or cannot utilise the insulin it produces. Insulin, is the hormone which regulates blood sugar, providing the energy we need to live. Blood sugar levels can grow to harmful levels if insulin cannot enter the cells to be burned as energy and thus can lead to damage to your major organs, causing heart attacks, strokes, kidney failure, nerve damage and blindness. It can also significantly impact the health of a mother and her unborn baby.

Miracle Babies Foundation is Australia's leading organisation aiming to provide better outcomes for newborns, and their families, challenged by prematurity and sickness.

http://who.int/campaigns/world-health-day/2016/event/en/

https://www.miraclebabies.org.au/

http://www.pregnancybirthbaby.org.au/diabetes-during-pregnancy

Higher oxygen saturation levels for extremely preterm infants improve disability-free survival in the BOOST-II trials

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- As provided by the BOOST II Trial Management Committee -

Published Paper - Outcomes of Two Trials of Oxygen-Saturation Targets in Preterm Infants, The New England Journal of Medicine, 10 February 2016

The risk of death or disability at the age of two years among infants born before 28 weeks’ gestation was 5% higher if they had been allocated a lower targeted oxygen saturation (range 85–89 per cent) than a higher targeted oxygen saturation (range 91–95 per cent), in the results of the BOOST-II study published in the New England Journal of Medicine. 

The BOOST-II Australia (conducted by CTC) and BOOST-II United Kingdom groups combined the results of their two large multi-centre trials involving 2108 infants, 1135 in Australia and New Zealand and 973 in the UK. Their work has provided neonatal specialists and hospitals with new clinical evidence of the safer level of blood oxygen to aim for. The results confirm similar findings from a trial in North America, which concluded that targeting oxygen saturation below 90 per cent in extremely preterm infants was associated with a higher risk of death, but not of disability.

Before these findings, neonatologists had targeted oxygen saturation across a wider range, between 85 per cent and 95 per cent. The decision of how much oxygen to give has been a difficult one, because too much and too little can both cause later disability. Now the precision of the target has narrowed considerably.

In the combined analysis of the Australian and UK trial, 48.1% of the infants in the lower-target group and 43.1% in the higher-target group had died or had a disability diagnosed by the age of 2 years.

During the trials, there was a correction to the algorithm that provided data from the oxygen meters. In an extra analysis of data from only the revised oximeters in both trials, the rates of death were 24.5% in the lower-target group and 16.9% in the higher-target group. This was a statistically significant difference.

Professor William Tarnow-Mordi, principal investigator of the Australian study, says: ‘We now have clearer evidence that the higher concentration of oxygen is superior, increasing survival without an associated increase in disability. If confirmed when combined with the results of three similar trials in the US, Canada and New Zealand, it will help prevent a great many deaths worldwide every year’.

Professor Tarnow-Mordi is professor of neonatal medicine at the CTC. He is a champion of trials to improve the treatment and prospects of newborn babies. He adds: ‘Randomised trials like these are the best way to determine which treatments provide the best outcomes.  More trials of other treatments for premature babies are urgently needed to improve their quality of survival. With innovative investment in clinical trial networks and point of care data capture, trials like these could finish much faster, at a fraction of the cost’.  

The principal investigator of the UK BOOST-II study is Professor Ben Stenson. He adds ‘The success of trials like these depends on hundreds of people. Thanks to the participation and support of parents and health professionals worldwide, the outlook for very preterm babies has never been better – and is still improving.’

Background information:

  • Air contains 21% oxygen.

  •  When we breathe air, this oxygen enters our bloodstream through our lungs.

  •  Most of the oxygen in our blood is carried by a molecule in the red blood cells called haemoglobin. 

  •  When a healthy person breathes air (21% oxygen) the haemoglobin in their arteries carries between 95 - 100 % of its maximum possible volume of oxygen,  i.e. the arterial haemoglobin is 95-100% saturated with oxygen.

  •  If the lungs aren’t working well, the oxygen saturation in arterial blood falls below 90%. 

  •  To compensate, patients with sick lungs are given a higher concentration of oxygen to breathe, between 22 - 100%.

  • Doctors wrap a probe around the wrist or ankle of a baby which shines a bright light through the artery. This probe is attached to a machine called a pulse oximeters, which measures the saturation of the haemoglobin in the arterial blood.

  •  The higher the concentration of oxygen the baby breathes, the greater the arterial oxygen saturation.

  • However, if babies are given too much oxygen to breathe for prolonged periods, their oxygen saturation will be close to 100% for long periods, which is associated with the risk of eye damage (retinopathy).

  • In 2005, when these studies were set up, neonatal paediatricians aimed to give enough oxygen to babies to breathe to keep their haemoglobin saturation between 85-95%.

Click here for Parent Questions & Answers

Further information: Dr Alpana Ghadge at 02 9562 5341 or 9562 5000 or alpana.ghadge@ctc.usyd.edu.au

Australia – one big mixed insalata!

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It’s Australia Day, and I thought I’d share a conversation from Saturday night while out at dinner in Darling Quarter with some of the mums from the school my boys go to.

We had booked for eight but a last minute change turned us into a party of six, causing our table to be separated into one set for six and a very close table for two.

It wasn’t long before that table was filled.

Although I am of Italian background, I don’t speak the language but I do recognise it when I hear it and it didn’t take me long to realise that the two guys seated right beside us were speaking very fluent Italian.

An unwanted visit on the wall behind us by a huge spider prompted a very lively commotion between us and the wait staff. It was also a conversation starter between us and our two close neighbours and I acknowledged the Italian connection.

These guys were lovely, explaining that they had just arrived hours earlier and were passing through Sydney en route back home to Italy after a three month expedition in Antarctica, sparking lots of conversation and photo sharing.   

Wanting to know where the best places to visit were, one asked curiously, “You are all Australian, yes?” We laughed, nodding our heads, knowing what he was eluding to. All except one of our group were born in Australia but we don’t technically look ‘Australian’, at least to foreigners. We went around the table to share our backgrounds. It went like this - Italian, Greek, German, Australian, Italian, Greek…. but all Australian. They found this interesting.

We told them it got better and mentioned the backgrounds of our husbands – Filipino, Greek, Egyptian, Maltese, English and Polish. And that we all had children – in fact, we have 17 between us.

Again, he said, waving his hand, “and all Australian.” A big yep!

Watching them process this, one of the mums laughed and simply said “Yeah, this is Australia, mate – one big mixed insalata (salad)!!!”

Haha! So perfect and couldn’t agree more.  What a moment to feel proud.

So today, on Australia Day, I’d like to say to Enrico and Salvatore, who are still somewhere in Oz, that I hope you are enjoying our beautiful country and our amazing mixed salad of people.

Happy Australia Day everyone!

10 years ... and counting!

As Christmas and the start of a new year approaches, feelings of reflection and gratitude tend to surface. This has been especially true for my team. And for myself and my cofounders, Naomi Rohr and Kylie Pussell, 2015 and its close has been a very surreal experience. Not only did the driving forces behind the passion for starting Miracle Babies – our own miracles Dillon, Eli and Scarlet respectively, turn 10 – but so did the Foundation.

And as we looked back at 10 years ago, being new mothers of babies born on the cusp of life, having no experience in the not for profit sector and no plan to take this beyond the hospital where our babies were saved, we were reminded of the time when such support and programs did not exist for families like ours and the hospitals we know that work so hard for us.

We could never have imagined back then that Miracle Babies would be what it is today. From one hospital, to every tertiary hospital in Australia. From supporting a few families to changing the experience for thousands. From speaking at local meetings to being on the international stage. From raising $35,000 at our first event to more than $6 million since going national in 2009. 

Miracle Babies started small and local in 2005 because it is all we could see. What it looks like today is because the community, the health system, and the families needed for it to be more.  It was vital that Neonatal Intensive Care had more opportunities to go beyond medical excellence and have new ways to support the emotional wellbeing of the families it was sending these little miracles home with. It has been such a privilege to be at the forefront of bridging this gap, all achieved in partnership with the amazing health staff and families we serve. 

And we have had nothing but angels help us do this. Chances are, you are one of them. They say it takes a village to raise a child and that could not be more true than if that child has come into the world premature or sick. If you have ever helped in any way; volunteered, knitted or sewn, offered advice, made a donation, attended an event, ran an event, liked or shared a post, supported us through your workplace, council or local government, and in so many other ways, you have been part of our story so far. You are very important to us and we thank you immensely!

It has been a very humbling and rewarding 10 years. One filled with passion, learning, tears, pride, accomplishment and at times, self-doubt but the vision has always remained clear – that no family going through this journey would go through it alone. 

To the families we have supported; every day we carry your journey and your stories in our hearts, you are the reason behind every decision we make and our hope is that in some way we have made an impact and a difference to the new world and new journey you never would have chosen but are travelling.  

On behalf of the entire Miracle Babies team, I wish you and your family a very happy and safe Christmas and New Years and look forward to another year and another decade of Miracle Babies being there for miracle families, like mine, right across Australia.

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The Award for being a Woman

Being a finalist in the NSW Woman of the Year Awards this week felt like the perfect compliment to, and acknowledgement of, our work at Miracle Babies, as we celebrate 10 years in existence and the impact we are making to the Australian Health System - and the families that experience the birth of a premature or sick baby.

Supporting 45,000 families every year with a small - and yes, female only - staff, and an army of volunteers around the country is tough, but we do it.

And we do it really well.

In her fantastic introduction (and I wish I could remember more of it!), event host Gretel Killeen made a comment along the lines of not understanding why we are not yet at the point where these awards do not have to exist.

I have to say that sitting there, I completely echoed what she was saying. And to be perfectly honest, a part of me felt a little uncomfortable being on show and for my work to be acknowledged in this way purely because I was a woman.

I did not realise how much this affected me until I found myself at a complete loss to provide an adequate answer to my three boys about why the Awards existed.

The conversation went something like this:

“What’s the award mum?”

“NSW Woman of the Year.”

“Is it a competition?”

“Well, yes, sort of, there are 3 other finalists. And one of us will get the top award but everyone is there because they are doing amazing work.”

“Does the winner then compete in the Australian Awards?”

“No, it is just for the state.”

“That’s a bit weird.”

“I guess it is...”

“So, is there a Man of the Year Award?”

My husband piped up “nope, doesn’t need to be, 'cause I’m man of the century!”

Funny.

“Haha, Dad… seriously, Mum?”

“No there isn’t.”

“How come? That’s even weirder.”

Silence. (And internal struggle from me). Then I finally said; “I don't really know how to answer that because you are right; there shouldn't be a ‘woman’ of the year award without a man of the year award - or either at all.”

And as they pushed to find answers, I somehow fumbled through the conversation by trying to explain that it’s part of International Women’s Day, and that exists because there are parts of the world where women cannot get an education, that in some countries or certain cultures women and girls are not seen as being as important as the men, that women find it hard to go back to work after having a family more than men do, that some women are not paid as much as a man for the same job etc (not mentioning that this happens in Australia)…

Every statement returned a “how come?” or “that’s stupid” or “that doesn't make sense”.

Instantly, I felt enormous pride wash over me followed by a sense of sadness. Here was their beautiful innocence, their natural instinct and what is modelled for them in our own home being challenged. And I didn't want it to be. I wanted it to stay intact. Because what they know now is right. Girls are equal to boys. Women are equal to men. I am equal to their dad.

And I don't want to introduce to them even the possibility that it could not be considered true.

I may not be raising girls to believe that they are equal and can do anything, but I am raising boys that do. They have a mother who is a CEO, who travels and who has help in the home. An educated mother with a university degree, who started her ‘business’ after her first two were born, grew it while they were little, and then during another pregnancy grew it even further - and has continued to do so. And they have watched their father support it.

They don’t know that what she has done was, and still is in some places, considered impossible.

I truly believe that along with promising our girls that things will change and be different, we must also make that promise to our boys and our men. That they will be seen as equals within their role in the family. That they will have flexibility and ability to comfortably assume a more involved, engaged parenting role. As I sit and write this, I am in my office and my husband is at home. Why? Because our 10 year old has a rash and needed to see a doctor. It was my husband who made the choice to return home to take him, and together we made the decision that I will go on Monday for the follow up.

We can definitely do this together. And I know there are plenty of men who are flying the #womancan flag like he is. I am certainly surrounded by them.

So, maybe one day ‘womens’ awards won’t exist – that’s the plan right? I hope so. Until then, here is one reason why they need to exist.

10 years ago, the founding women of Miracle Babies were continually referred to as 'just a group of mums' who did a nice thing and started a small community support group. Well done. Doesn’t happen so much now. Not too long ago, I overheard a leading university researcher introduce us as a group of women who saw a gap in the health system, filled it and now sit on the global stage changing and challenging health care.

This is what can happen when women and yes, mothers are supported. This is why the acknowledgement of an award for a woman being a woman even in today’s progressive environment is still important.

I still went home after the awards and told my boys “I am so glad you find it strange that an award for women just because she is a woman exists. Let’s hope we can all be a part of the change where one day they won't exist.”

 

Originally published at www.linkedin.com