15 Years of Nurturing
WEDNESDAY, SEPTEMBER 16, 2020
2020 marks '15 Years of Nurturing' premature and sick newborns and their families for the Miracle Babies Foundation.
What started as a way to support other families going through the NICU (Neonatal Intensive Care Unit) and SCN (Special Care Nursery) journey by a group of local mums, has since become Australia’s leading organisation supporting premature and sick newborns, their families and the hospitals that care for them.
“Miracle Babies formed when my miracle babies were so young. I was at my most vulnerable after having three premature babies and several losses, and the connection with other families was my lifeline. It is such an honour to acknowledge my miracle babies, my three with me here today and growing well, and also those in my heart forever by being able to support other families through their own traumatic experience and giving back to the hospitals that saved my babies lives."
Kylie Pussell, CEO and Co-Founder.
To commemorate and celebrate ‘15 years of Nurturing’ for Miracle Babies we’re looking back and acknowledging 15 major moments and achievements for the organisation that helped get us to where we are today.
15 Miracle Babies Foundation moments:
Launched in 2005 by Melinda Cruz and with the help of Liverpool Hospital's NICU, Miracle Babies Foundation was formed by a group of mothers of premature and sick newborns.
“I flash 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, no, 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,” Melinda Cruz.
All bonded together by their NICU experiences, they shared the same common desire of wanting to support other families of miracle babies and give back to the wonderful hospitals that care for them.
“On Sunday July 24th 2005, after 114 days we walked out of Liverpool NICU with our second born, 25 weeker Eli. Just four days later Eli and I returned to the hospital to meet other mums of NICU babies. This became the very first meeting for Miracle Babies.” Naomi Rohr, Miracle Babies Co-Founder.
Together, Miracle Babies and Liverpool Hospital worked on an in-hospital parent support program, allowing current NICU families the opportunity to speak to past parents and on expanding the already running, but resource limited, premmie playgroup to reach even more NICU families.
“Over the 11 years I was part of Miracle Babies, I was so blessed by the support of our work from family, friends and even strangers, allowing us to grow our vision. The journey of parenting a Miracle baby is at times tumultuous, and for families like ours the effects are lifelong. Whether you've given your time, hard earned money or simply shared a social media story it all makes a difference to the organisation and the people that are behind it.
While no one would ever ask to go through what we do, I encourage you to embrace it. Be open to the journey, the people you meet, the strength in you and your miracles, the highs and the lows, feel it, grow through it, show gratitude and most importantly be kind to yourself.” Naomi Rohr.
Beginning as a small local charity, Miracle Babies was overwhelmed and very blessed by the generous support of the local community. Their support enabled us to grow and offer the very best support to NICU families and provide Liverpool Hospital's NICU with much needed equipment and resources. As a national foundation, we now offer this support to families and NICUs/SCNs Australia wide.
“More so now, than when we first founded Miracle Babies 15 years ago, I still feel this need to be that ardent advocate for the present needs as well as the future needs of the families whose babies are born too early or too sick. We are learning so much more about the long-term effects of prematurity and this drives our momentum which hasn’t changed during the last 15 years. I am so proud of our commitment and accomplishments and what we strive to do; and personally, it’s an awesome feeling to be a part the Miracle Babies Foundation.” Andrea Hendry, Miracle Babies Co-Founder.
To introduce ourselves to the community, Miracle Babies Foundation threw a launch event, the first of what would be many major events for this group of passionate mums. The inaugural ball would become an annual centrepiece for our organisation for years to come.
“Our first major event for Miracle Babies was our launch night at Liverpool Catholic Club. The room was filled with over 200 of our closest family and friends, hospital staff and medical professionals that had cared for our babies, all there supporting our vision. It was a truly special night and really highlighted the need for the work we were doing. Community support for us was amazing from the very start!” Kylie Pussell.
One thing Miracle Babies truly understands is that admission to a NICU or SCN can be daunting, frightening and shocking. The development of family support services and resources was crucial in allowing families to feel supported and empowered with knowledge during an often difficult and confusing journey.
“With more and more families affected each year, the need for support is greater than ever. Unfortunately, today there just isn’t support available for all families. Studies have shown that parents who do go through the experience of having a baby born premature or sick are more likely to experience clinically significant degrees of psychological distress. This, along with the stress of the unknown longer-term challenges which can often come with a having a baby born premature or sick can have a damaging effect on the wellbeing of the entire family unit. After discovering a gap in the system for support for families going through such an isolating experience like this, Miracle Babies Foundation has been committed to providing much needed emotional support and advocating for families to ensure better, healthier outcomes in the future.” - Kylie Pussell.
The creation of our NICU Survival Pack for families admitted into participating hospitals equips parents with vital tools and resources as they try and navigate this strange, high tech universe. It also provides information about the availability of local/community NurtureGroups after leaving the safety of the hospital’s care.
Included in the NICU Survival Packs is our own book titled Nurture, developed to guide parents and caregivers through their hospital journey with a premature or sick newborn. Nurture aims to empower families with knowledge, to help them feel comfortable and proactive in their child’s care and to provide them with the much needed support, guidance, confidence and strength for the journey ahead.
“I'm so proud of 'Nurture' and the hope and encouragement it offers families, that wasn't around when my boys were born.” Naomi Rohr.
Because every journey is different the 128-page book was designed to be an in-depth and comprehensive source of information, touching on issues and concerns that often affect families dealing with the birth of a premature or sick newborn. It covers many aspects and concerns shared by families to give readers a better understanding of neonatal care in an easily readable way. It was developed with the help and guidance of health professionals and parents whose babies took an unfamiliar and unexpected journey, requiring specialist care in the first few days, weeks or months of their lives.
“Who better to produce such a guide, providing so much frank, valuable and practical advice, than those who have been through it all themselves? Who better to understand what it must be like, than the mothers, fathers and families of premature and sick infants?” A/Professor Ross Haslam Chairman, Australian and New Zealand Neonatal Network.
A more recent addition to resources is our Grad Bag, available to families at participating hospitals. We know the moment you finally get to take your baby home is an exciting time. However, it can also be extremely daunting. For many families they are suddenly leaving the safe bubble of the hospital and becoming the primary carer without nurses and doctors around. The Grad Bag was designed as a way to celebrate the momentous milestone and also provide a guiding link to support families in the transition from hospital to home. Included in the bag is our Home & Beyond booklet.
“Going home is a major milestone for families with a premature or sick newborn. Finally being able to take your baby home after weeks or months being cared for in the NICU or SCN is a moment these families will never forget, it’s the moment they have been longing for since their precious baby was born. At the same time though, it can bring so many mixed emotions. Suddenly you’re on your own, you don’t have the safety of doctors and nurses close by. This can be really frightening for parents. Through the introduction of this new resource, we are proud to be able to bring these families the extra support that they need at this special time. To celebrate with them and also make sure that they feel confident and reassured, and that they have access to the information and support that they need after they have left the hospital.” Kylie Pussell.
We are also very proud of the moment we introduced our 24hr 7 days a week family helpline NurtureLine. Miracle Babies Foundation NurtureLine is a free family support helpline catering for families with a threatened pregnancy, the hospital journey with a baby currently in NICU/SCN, the transition to home and onwards. Volunteers are able to listen, share, understand and support families as they too have experienced the guilt, fear, anxiety and isolation of having a baby challenged by prematurity or sickness.
Our Annual Ball had been growing for a few years and becoming a real highlight in the calendar for our supporters and local community in the Sydney South West. Our largest ball was over 600 guests at the Liverpool Catholic Club and the atmosphere was electric.
“We all have so many wonderful memories from this night, singing and dancing with Doc Neeson and our other Ambassadors; all working together to raise funds for Miracle Babies and supporting more families.” Kylie Pussell.
Miracle Babies was immensely proud to be a part of the 2008 NSW Association of Neonatal Nurses Annual Conference. Melinda Cruz was invited to speak at the event about what we do as an organisation, who we support, and to share her journey as a Miracle Mum. This was the first time in conference history, the thoughts of a parent was heard.
“Sharing my story publicly for the first time was one of the hardest things I’ve ever done. I found it hard to finish my talk as I couldn’t read the words I had written through my tears. One of the neonatal nurses from the audience came up onto the stage and stood by me to help me through it. I’ll never forget how touched I was by that. “ Melinda Cruz.
In June 2009, the team at Miracle Babies were given a big surprise by the Channel 9 TV program, Random Acts of Kindness, hosted by our now ambassador Scotty Cam. The Miracle Babies team was given a wonderful night out in Sydney, whilst unknown to them, the Random Acts team were remodelling Miracle Babies Head Office.
The team received brand new furniture, a new boardroom, computers, laptops and a call centre telephone system. This gave Miracle Babies the tools and exposure needed to move from a local charity to a national Foundation very quickly.
As our exposure grew and the demand for services increased, Miracle Babies resolved to grow as a not-for-profit organisation and officially become a Foundation and bring on a Board of Directors to help expand our reach. Included in this was asking the former NSW Premier, Morris Iemma to come onboard as our Chairman.
“If we chose not to grow and stay small and local, it meant we’d have to say ‘no’ to other parents in need. We knew what it was like to go through it and not to have help, and we didn’t want anyone else to be left out.” Melinda Cruz.
It turned out to be the right path for us and enabled us to support more families and boost our reach to become Australia’s leading not-for-profit organisation supporting premature and sick newborns, their families and the hospitals that care for them.
Initially, Miracle Babies worked closely with Liverpool hospital to run parent support groups in-hospital. As positive outcomes from these parent support programs became evident, Miracle Babies was invited to take part in several nursing conferences and training courses offering a parent's perspective of the NICU experience. This introduced our programs to staff from other NICUs around the country who began inquiring about extending our services to more families.
As the demand for our services increased it became clear there was a gap for this style of support service for families going through this journey. Over time Miracle Babies has expanded our in-hospital NurtureTime support and out of hospital NurtureGroup support all across Australia, with the NurtureProgram covering all states and territories over our 15 years of Nurturing.
NurtureTime in-hospital support is facilitated by qualified volunteer parents who themselves have experienced the birth of premature or sick newborn. Parents, family and friends can ask questions, share their thoughts and feelings knowing the volunteer has a shared experience. Volunteers work closely with Social Work and Nursing Departments and are available for one-on-one or group support on-site in the NICU, Special Care Nursery, Antenatal and Maternity wards.
"I realised I was allowed to have a bad day now and then. I felt silly sometimes about the things I felt guilty about but when I listened to other people you who have been through it I realised I am actually pretty normal. It can be almost funny sometimes."
- Jessica Valencia, mum to twins girls born at 32 weeks on the support received by Miracle Babies volunteers.
NurtureGroups are free play and support groups for miracle families. It is a safe and secure environment for children 0 to 6 years who have been challenged by prematurity or sickness in which they can learn and develop through play, whilst offering families ongoing parent support after leaving the safety of a NICU/SCN.
'My family and I have been attending the Miracle Babies NurtureGroups and have absolutely loved it. Being able to connect with other families who have been through a similar journey has really helped overcome many mental health struggles I have had. We feel very blessed to be a part of an amazing organisation'. Chelsea (WA).
The obstacles 2020 has thrown at many of us created the need for Miracle Babies to adapt and ensure already isolated and fragile families are continuing to be supported. As many parts of Australia face the reality of self-isolation and social-distancing amid the coronavirus pandemic, Miracle Babies is working with hospitals, families and our program staff and volunteers to continue supporting our miracle community during outbreak. The arrival of the pandemic meant our regular face-to-face services were put on hold for a while, and though they’re starting to return in parts of Australia, we are still offering access to virtual support groups through NurtureTime Online, a virtual support group run by our NurtureProgram team over ZOOM. These live ZOOM sessions help families nationally to connect and be supported during these difficult times.
“During these difficult times and with social distancing guidelines, it’s important we stay connected and care for each other. Our NurtureTime Online sessions are a great way to meet and share your journey with other NICU/SCN families whilst protecting the health of your family through our online sessions,” says Kylie Pussell.
In 2012, Melinda Cruz was invited to speak at a three-day neonatal medical conference in Chicago. More than 1200 delegates were present representing over 900 NICUs from around the world.
Melinda was only one of two parents invited to speak and as is often the case at such conferences, spent time listening to many of the presentations.
“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.” Melinda Cruz.
In 2016 Miracle Babies helped give a parent’s voice to Human Milk Bank research when we were invited onto a new project of The Australian Red Cross Blood Service. They were exploring the possibility of establishing a milk bank and wanted to know if Melinda Cruz would join their Clinical Advisory Board.
“I got a goose bump moment when I was invited onto a the project. 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.” Melinda Cruz.
Melinda sat alongside the Red Cross Blood Service team and the Heads and key staff from some of the NICUs that work closely with Miracle Babies.
“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.
Not long after, nutrition researchers from the South Australian Health and Medical Research Institute (SAHMRI) and Flinders University were involved in a project that aimed to collaboratively establish the top research priorities in the area of human milk banking and the use of donor human milk. This unique project sought the views of all stakeholders - parents of preterm infants, milk donors (past or present), potential milk donors, health professionals and researchers.
In 2018, all the behind the scenes hard work paid off for South Australia’s most vulnerable miracle babies with the official launch of the Australian Red Cross Blood Service Milk Bank which supplied pasteurised donor breast milk to The Women’s and Children’s Hospital (WCH) and Flinders Medical Centre (FMC) in Adelaide.
This has since expanded to NSW NICUs and will continue expanding across the country.
Connecting with miracle families is core to Miracle Babies mission of creating meaningful communities that empower families and children to reach their full potential. Growing our Miracle Babies social media community through Facebook, Instagram, LinkedIn and Twitter has helped get our message and vision out there and more importantly allowed families in a similar situation to connect and share their stories. It was a momentous occasion in 2019 when our Facebook page reached 60,000 likes.
"It always makes me proud that parents have been able to make so many positive impacts to other families and to standards of care for our babies requiring specialised medical treatment. The relationships built over the past 15 years are truly special and I thank all of you for taking Miracle Babies into your hearts and helping us provide better, healthier outcomes for newborns and their families challenged by prematurity or sickness. Together we can make a difference for all our families and again to all the families who have allowed me and Miracle Babies to support them through their journey, it is truly a privilege.” Kylie Pussell.
Although awards are never the reason we do what we do, it is very humbling for us to have our work acknowledged and in some ways a comfort for the community we are trying to build trust in.
Some of the more memorable awards of our 15 years of Nurturing include our first award in 2008, the NSW Government Community Service Award when Morris Iemma was Premier. The following year Miracle Babies won the 2009 Bicentenary Order of Liverpool Award.
In 2010 Melinda Cruz received a nomination for NSW Woman of the Year, and also won the 2010 Liverpool Citizen of the Year award. That same year we also celebrated Andrea Hendry taking home the Liverpool Volunteer of the Year award as well.
In 2011 Melinda Cruz won the Ernst & Young Australian Social Entrepreneur of the Year award.
“With this award we grew up as an organisation and people started to take notice,” Melinda Cruz.
It was an exciting year, because Melinda went on to win the Westpac Ruby Connections award and was included in the Who's Who of Australian Women.
More recently, we won the 2019 ACTA (Australian Clinical Trials Alliance ) Consumer Involvement Award. The Consumer Involvement Award 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.
“For three years in a row, a neonatal trial has won an award at the ACTA Annual Trial of the Year Awards. 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.” Melinda Cruz.
The growth of Miracle Babies is much like running a marathon, in that it takes time, dedication and the commitment to never giving up. This is why running events have paired so well with our cause. Over the years we have encouraged supporters to jog, walk or run their favourite sporting event to help raise vital funds for premature and sick newborns, their families and the hospitals that care for them.
We’re so fortunate to have also been involved in some of the world’s biggest running events, from Sydney’s iconic City 2 Surf fun run, the London Marathon, and the renowned New York Marathon.
One of our amazing Miracle Mums, Natalie was proud to be part of our 2018 New York Marathon team.
“I started working with the Miracle Babies Foundation in 2015 as the Darwin NurtureGroup Support Officer. I was visiting babies and families in NICU, running a playgroup for ex-NICU families, and holding talks in hospitals about how Miracle Babies can help staff in caring for NICU babies and families.
I even signed up and trained for the New York marathon fundraiser. What an experience - when I crossed the marathon finishing line in 2018 I was tired, cold and hit by an enormous sense of relief. I had done it. The journey to get to that point (crossing the line) was tough. But hands down running the marathon and helping raise over $11,000 for the Miracle Babies Foundation was one do the best things I have ever done and I would do it again in a heart beat.
Getting involved with the Miracle Babies Foundation and helping other families has been a real privilege. It has enabled me to use my personal experience as an ex-NICU parent to reach out and provide comfort to others. I am fortunate to work with the most amazing team of staff and volunteers from around the country who are all driven by the desire to support these babies and their families.” Natalie.
Miracle Babies continues to expand our global presence and reach by being invited to speak and take part in presentations and conferences around the world, from Canada, to Germany and Italy. More recently in October 2019, Korea Food for the Hungry International (KFHI) reached out to Miracle Babies with a request to visit our offices in Sydney and learn more of what we do.
Operating as a Non Government Organisation for more than 30 years, KFHI have turned their attention to the support of families in South Korea who experience the birth of an extremely premature baby.
Following this initial meeting, Kylie Pussell and Melinda Cruz were invited by KFHI to fly to Seoul, South Korea to attend the 2019 KFHI Health Symposium to share the work of the Foundation including a request for insights on how to set up and sustain a professional parent program.
In 2020, Kylie Pussell continued to forge ahead with our organisation’s mission to improve the lives of premature and sick babies after becoming one of the newly elected members on the Chair Committee for the Global Alliance for Newborn Care (GLANCE).
Kylie is one of 20 international representatives from 14 countries that comprise the newly formed Chair Committee. The diverse advisory committee includes people with various cultural backgrounds, equipped with fantastic skillsets, who will support GLANCE in the next upcoming five years. The Chair Committee is an important source of knowledge, experience and advice to GLANCE and will meet once a year to discuss projects, priorities and important global topics within the maternal and newborn health arena.
"I am very honoured to be part of this collaboration with global parent representatives and clinicians on working together to better support and improve outcomes for premature and sick babies and their families in Australia and across the globe. This is an amazing opportunity to improve the care for babies and their families worldwide." Kylie Pussell.
Miracle Babies have been online via an official website for close to 15 years. Launching our Miracle Babies website meant it was the first time Australian families had access to an Australian site, full of Australian information, Australian stories and details about Australian hospitals. Before that families had to access overseas sites and besides having no information on local help, even the language was different, for example, we say humidicribs but some countries call them isolettes. Helping us to provide this invaluable online resource for all Australians has been the NSW Government, who has supported us from the very beginning.
Miracle Babies was quick to build a community connectedness with our Miracle families by holding the first of our annual picnic events in our founding year. The 2005 picnic was the first of a massive array of community events and involvement over the years, including balls, high teas, cocktail parties, movie nights, and our annual Golf Day.
Our Golf Day is in loving memory of all the babies who have lost their fight for survival and who will remain forever in our hearts, thoughts and prayers. Golfers played for the Marcus David Pussell Trophy. Kylie Pussell’s son Marcus was born on the 13th March 2004 at 25 weeks gestation (15 weeks premature). He was resuscitated at birth and required ventilation. On the 15th March, 2004 Marcus’ family had to heartbreakingly say goodbye. “Marcus has left a permanent imprint on our hearts and will be forever loved”, Kylie Pussell.
Our most recent and newest community event is our Miracle Moon Walk. In 2018 we launched the first Miracle Moon Walk, a 10km night walk, taking in some of Sydney's most iconic city and harbourfront locations. The special event aims to raise important funds to support more families across Australia with a premature or sick newborn.
“This event is growing every year and is such a wonderful event. Families and supporters all come together to walk through Sydney City in our Miracle Babies teal colour to raise awareness and funds. It is a really magical night and feels like a part of something bigger than us individually. It’s a memorable night for many families, particularly those who have had their own experience. It really does change you and the opportunity to honour the miracles still with us along with those who have passed is a special and emotional experience." - Kylie Pussell.
Make sure no one goes through this journey alone
Every day in Australia, there are 132 babies born requiring specialised medical care in a NICU or SCN. Sadly, the number of babies born premature or sick each year in Australia are increasing. These babies and families are at their most vulnerable and with the current health situation, this places our families at even greater risk of fear, isolation, anxiety and depression.
We need your help to help us continue to provide support and work together to provide a positive impact on our miracle babies and their families. As we adapt to the current situation and develop relevant and current support platforms for all our families, we need your help. Families having a premature or sick baby is not stopping, our miracle babies and families need our help and we can’t stop either.
"We never envisaged the true impact and potential for change that Miracle Babies has been able to achieve in 15 years. It has been an honour and a privilege to be part of something so special and support families through the life changing journey of having a premature or sick newborn. Thank you to all who have been a part of the story so far and we look forward to continuing this amazing journey, increasing access to support, as well as providing more support, education and empowerment to families.” Kylie Pussell.
With your help, we have been able to expand our services to reach more families. But, with 48,000 families impacted each year, too many are still going through this alone.
Help us make an even bigger impact this year:
A small, monthly donation could change a life. Just $10 per month provides support to two families each year.
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