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.

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.    

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 

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

MILK BANK FOR PREMATURE BABIES

TUESDAY 11TH SEP 2018

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

What I want my Neonatal Nurses to know

2018 International Neonatal Nurses Day

Almost 16 years ago, I was a scared 25 year old first time mum of a premature baby born at 34 weeks. Besides it being an incredibly frightening time, I look back and realise how I really had no idea of what was going on or what I was doing. My time with him in the Neonatal Intensive Care Unit (NICU) was like being in a completely foreign world. It felt like everything was happening really fast and really slow at the same time. What I didn’t know then is that it was an experience I was to go through another two times with my next two babies including a nine week stay with my second son who was born 13 weeks before he was due.

Wednesday, 15 August, is International Neonatal Nurses Day and I often reflect on the profound effect and role the neonatal nurses had not only on the physical health of my babies but also on my own emotional health during that time.

The day your children are born are amongst the most significant days of your life. And whether that experience is joyous or one tangled in fear, worry and trauma, like mine were, the memories don’t leave and the people who are with you at the time become part of your story – and that includes the nursing staff who live the day to day world of NICU with you.

Although their primary focus is the baby in their care. What comes attached to that baby are anxious parents and the nursing staff were there for me in ways I will forever be grateful.  

I remember them comforting me every time I cried – which was a lot.

I remember the gentle encouragement they gave me when I felt scared to put my hands inside the humidicrib and touch my baby.

I remember the confidence they gave us to finally hold them even though they were hooked up to machines.

I remember the photos they took and the memories they helped us create when we couldn’t be by our baby’s side.

I remember it was the nurse’s hands in the water with me the first time I bathed my baby.

I remember how they educated me and helped me work out how to express breastmilk knowing it was going to be for a long time, especially with my earliest baby, as it was almost 7 weeks before he was ready to even try and feed on the breast.

I remember them reassuring me that I could do it and would be able to look after them when the monitors were finally turned off and they were coming home. That was scary.  

This is a list that could go on forever and on a day that acknowledges their work, what I would like to say to my neonatal nurses is simply thank you.

Thank you:

• For knowing that as a new mum caring for a sick baby was scary

• For being patient and repeating things to me often.  I was in shock, sometimes it took a long time for new information to sink in

• For doing what you could to make us feel part of our baby’s team and not feel like visitors

• For understanding that small things were a big deal. Their first bath, their bellybutton falling off, their first outfit. If it was something I would be part of at home, it was a big deal here too

• For encouraging us to take lots of photos and videos even though it was hard to see how baby like that

• For realising that I found it difficult to act and feel like a mum when there was so much I could not do for them

• For telling us it was okay to hope

Being a NICU parent is something I didn’t know existed before having my boys and it was an experience I needed support through. This is where my neonatal nurses came in. Their role is so much more than the babies they are caring for and includes caring for the families those babies will go home with.

To these incredible nurses everywhere, my hope is you are aware of the imprint you make to our memories at one of the most important and emotional times of our lives. Thank you for being so passionate and dedicated to your work because I know for myself personally, we wouldn’t have our babies and the experience we did without you.

You are changing lives and helping create families.

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

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.  

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.