Written By House of Bimbi Content Director, Michelle Cole.
Pregnancy and postpartum are often exciting times and there are many notions of how it should be and the ‘ideal’ scenario. Yet, we know that this is often not the case. Each year, more than 48,000 babies are born requiring specialised care. The journey for their families can be incredibly frightening – with health concerns, hospital visits and mother and baby separation being experienced on top of the usual rollercoaster of emotions and learning journey that postpartum can entail. So what support is there is place for premature and sick newborns, their families and the hospitals that care for them?
Miracle Babies Foundation is a not for profit organisation that was founded by a group of mums who had their own experience of having a premature or sick baby. It was founded in 2005 and for almost 20 years they’ve been supporting families through peer support, information and resources.
Danielle Hodgson, Chief Operating Officer, from Miracle Babies explains “The experience of having a baby born premature or requiring specialised care is like a world that many don't know exist. Nobody ever plans to bring their baby into the world requiring weeks or months in the hospital and being separated by their newborn. It's a time that should be filled with joy and visitors, flowers and celebration. Yet sadly for these families it's often a roller coaster of emotions.”
Many of these babies can be born as early as 23 weeks, so just over halfway through a pregnancy which can be incredibly scary for parents to experience. These babies can be born as little as 500g so less than a small bag of rice. Absolutely tiny. Danielle adds, “Because these babies are being born so early, they can face a number of health challenges whilst they're in hospital. They will go through a number of surgeries, procedures. Some will face some complications, sometimes illness, which can be life threatening for these babies as well. So it's often they will have a good day and then the next day might be very, very different. So that time in hospital can actually be really traumatic for the entire family.”
Sadly, in Australia there are no facilities for the parents to stay in hospital with their bub whilst they're receiving treatment and critical care. Mums will be discharged a few days after they've given birth which can be quite heartbreaking because that means that they're leaving the hospitals without their baby. They're walking out that door empty handed. Then for the next few weeks or months, they'll be travelling back and forth to the hospital to spend time with their baby. In the NICU or Special Care nursery. This can be really hard because some of these families might have other siblings at home they have had to stop work earlier than they planned because of the earlier birth, so they're often facing financial strain too.
Danielle adds, “They're trying to maintain a normal life at home for other children. And these mothers are also recovering. They're often trying to recover from traumatic birth and their own physical health is also at risk. As well as their mental health.” Juggling the emotional side, the physical side and also the financial impacts that impact the entire family unit. Often those challenges are not widely understood within the wider community, and sadly, that does mean that these families can find it hard to relate to others who haven't been through the experience. So speaking to somebody who understands helps them cope and also guides them through their own journey, which is quite a unique start to parenthood, is key to swimming and not sinking. That's where Miracle Babies comes in.
The Miracle Babies support team are all parents themselves who have been through the experience of having a premature and sick newborn. For parents going through this experience, the support means that they can talk to somebody that they can trust, that truly understands what they’re going through. They also provide hope and reassurance and put them into contact with further support or information that they need so that they can be the best advocates for their child as they grow and develop.
So what does Miracle Babies offer?
Danielle shares, “So as far as our programmes, we have in hospital peer support programmes. Our teams will go into the NICU or the Special Care nursery, we sit with the families and we provide the listening ear. It's mostly provided cot side so that they these parents don't need to leave their baby side. They can share their thoughts, their feelings.”
The impact is tangible. “Many of these parents come to us saying it's just so nice to have a relatively normal conversation with somebody who understands what I'm going through. And that's the most important part of that service.”
Once babies are discharged, Miracle Babies have specialised play and support groups. Sometimes as a result of premature birth, these ‘miracle babies’ can also face disabilities, developmental delays or behavioural challenges. Danielle explains “Cerebral palsy is quite common amongst premature babies as well, so this provides a safe place for them for their baby to learn and develop through play, but also so that these parents have ongoing support after they've left the safety of the NICU or special care nursery unit. “
“Many parents do find it hard to go to an ordinary play group just because it's such a different conversation. They might be having ongoing medical appointments and their baby may have come home on oxygen or feeding tubes, and it's just a very different experience.” These specialised playgroups puts them together with other parents who are also going through a similar experience.
In addition, Miracle Babies also provides free resources to support going through each stage in their journey. They will provide a free pack that gives them information and some important tools to help their own coping. There is also a 24 hour family support helpline too (NurtureLine 1300 622 243). Daniellie explains, “So these families, parents, grandparents, extended family, they can call us at any time if they need somebody to talk to. It's not medical advice,, it's peer support.
Miracle Babies started based in South West Sydney and it is now a national organisation. They are working with around 90% of the NICUs in Australia and have developed really great relationships with the hospitals; working in partnership with these medical professionals. “We’re filling an important gap in the health system – making sure that these parents are well supported.
The NurtureNetwork
Another part of what Miracle Babies does is providing a parent voice to research studies and clinical trials. They developed the Nurturenetwork to allow parents who have had a baby born requiring specialised care to be able to take part in this research and surveys so that they have an opportunity to impact the future of other families. It's also becoming increasingly important that even children themselves who have been born premature have their voices heard too.
You can join the NurtureNetwork, an opportunity for miracle parents to give a voice to research and surveys, to positively influence outcomes for future families.
If people want it to help, what can they do?
Miracle Babies operate on a huge volunteer base. Danielle explains, “Our programme is run through fundraising, we received no regular government funding, which can be really tough, but we're so grateful for the generosity of the Community. That's how we've been able to grow.”
Donations can help to contribute to the work that Miracle Babies. Volunteering can also be a way to support the work Miracle Babies are leading. This includes knitting beanies! “Inside each of free packs given to families are knitted beanies. They're hand made by volunteers all across Australia.”
What other support is there?
For any family that is going through this experience, or if you want to help a friend going through it, there is so much information on the Miracle Babies website.
The Nurture Information Hub is an evidence-based wealth of information . Danielle adds, “We know that finding information can be really overwhelming. There are so many sources out there and knowing where to start can be hard. Especially when you are juggling a newborn and hospital visits.” Miracle Babies have worked with allied health professionals, psychologists, doctors and nurses to bring together and collate all of that information into one easy to navigate spot.
Nurture ‘E’ Online Information Hub – assisting you and your child throughout every life stage
Round the Table Advice for anyone going through this
“Our advice would be to make sure to look after yourself. Ask for help. Don't be afraid to ask for the practical things such as meals, or helping to do errands or with siblings. That means that you're able to be in that moment and spend time with your baby in the NICU, particularly during that hospital period, which is so emotionally draining. Ask for help and make sure that you're putting your mental health and your self-care at the top of that list".
Another piece of advice is to say hello to others that are in the unit with you because it can be such a comfort just to share a smile or a hello with somebody that's going through the same thing as you.
Miracle Babies Foundation is Australia’s leading not for profit organisation supporting premature and sick newborns, their families and the hospitals that care for them.
The NurtureProgram provides vital peer support, education and resources provided free to families across Australia.
This includes:
NurtureLine(24 Hour Family Support Line)
NurtureTime(In-Hospital Peer Support)
NurtureGroup(Specialised After Discharge Play and Support Groups)
NurtureResources– support and information resources for every stage of your journey
Nurture ‘E’ Online Information Hub– assisting you and your child throughout every life stage
Also, you can join the NurtureNetwork, an opportunity for miracle parents to give a voice to research and surveys, to positively influence outcomes for future families.
Join the Miracle Moon Walk, an annual night walk in Sydney’s beautiful CBD raising awareness and funds for the work of Miracle Babies Foundation. Kids under 12 free.
Or sign up to become a Regular Giver, every amount makes a huge difference. Just $2 a week could provide full support to one more family throughout their journey with a baby in specialised care.
