Every Week Counts Showcase Canberra

Recently Amber travelled to Parliament House, Canberra for the Every Week Counts Showcase. She was honoured to be the opening speaker of the event to discuss The Power of Consumers in the Collaborative. Amber has been a member of the Consumer Advisory Group since it’s inception and has been working with the WA groups for many years. More than 300 people attended this event from 65 hospitals all over Australia.

The Collaboratives initiatives for safely lowering the rates of earlyterm and preterm birth can be found here. So far participating hospitals have seen a marked improvement in their rates of earlyterm and preterm birth but there is still a lot of work to do! We are hopeful that future funding will enable more hospitals to participate in the program in the future.

Follow Up Guidelines for Comment

We’ve been working with a big team of people from all over Australia to write a new Guideline for Follow-up Care for Young Children Born Very Preterm. We know they are at increased risk of life long challenges and we also know that early intervention is critical. Unfortunately there has been no uniform approach to follow-up programs around the country. This new Guideline hopes to change that.

The Guideline is now in Draft phase and open for public comment. We welcome all people born prematurely, caregivers, clinicians, allied health professionals and other interested parties to reach the Guideline and provide feedback. More information can be found here:

Preterm Lung Health Consensus Workshop

Would you like to take part in the final stages of establishing the community’s Top 10 research priorities for the lung health of people born prematurely?

The Children’s Lung Health Team at Telethon Kids Institute invite you to take part in their Consensus Workshop on 3 December at Telethon Kids Institute, Perth Children’s Hospital. At the worskhop you will be involved in selecting and ranking the Top 10 research questions/themes that were identified in the Preterm Lung Health Research Prioritisation Survey.

If you were born prematurely, care for someone born prematurely, are a family member of someone born prematurely, or are a health professional with an interest in the lung health of people born prematurely, we encourage you to be involved.

Simply register your interest in attending here:

https://curtin.au1.qualtrics.com/jfe/form/SV_6A3NthV30CCcpRc?fbclid=IwAR0mOgRQ2-Voq-Tx1jkSpYKAiC95EDLgTks4r8snFaVC5PwdrCS-NE9c0Fs

Refreshments will be provided, and travel expenses will be covered.

Thank you for considering this important opportunity.

Neonatal November 2022

With 15 million babies born early all around the world each year, prematurity is a critical issue! Every day in WA we experience 12 or more admissions to Neonatal Units. Partnering with organisations all over the world we aim to light as many buildings and landmarks purple as possible to help shine a light on this critical issue. We invite you to light a candle or shine your own purple light to join the global wave at 7pm on November 17. Since 2013 we have been coordinating lighting in Western Australia and the community support we have received has grown and grown.  We are delighted to have support from the following venues and landmarks this year:

• Albany Town Square

• Alison Hartman Gardens, Albany

• Perth Children’s Hospital ‘Fizz’

• The Kids’ Bridge, PCH

• Matagarup Bridge

• The Sky Ribbon

• Mount Street Bridge

• Fremantle Prison Gatehouse

• Perth Concert Hall

• The Bell Tower

• ECU Joondalup

• Mandurah Bridge

• Council House Perth *from 10:30pm

• Yagan Square and Water Fountain

• Elizabeth Quay

• King Edward Memorial Hospital entry

• Trafalgar Bridge, East Perth *from 10:30pm

• Eastern Goldfields Community Centre, Kalgoorlie

• William Grundt Memorial Library, Kalgoorlie

• QV1 Tower

• Busselton Civic Centre *unable to change lighting will be running an LED banner with special message

• Brockman Street, Manjimup

• Rockingham Beach Foreshore

• Graham Farmer Freeway Tunnel entrance

• Joondalup Drive Bridge

We would love you to get out and about to enjoy the purple lighting.  Huge thanks to everyone on the list above.  Please let them know what it means to you to see them light it up purple!

Some members, volunteers are supporters will be walking across Matagarup Bridge as the sun sets over Perth to take in the purple lighting. You are welcome to join us, meeting at the playground on Burswood side of the bridge at 6:30pm.

Don’t forget to tag us when sharing to your social media @tinysparkswa #worldprematurityday #neonatalnovember

**Please note this list is subject to change.

Chelsea Davies - Author of Come Home Ella

Use the code tinysparksella to ensure $1 from your purchase is donated to Tiny Sparks WA

http://www.empoweringresources.com.au/come-home-ella

A few years ago, I began writing children’s literature. I love the way a difficult topic can be approached so gently, with love and care through picture books. I decided I would like to add to the amazing NICU support network by creating a picture book, not only for siblings of newborns who begin their life in NICU, but also to give extended families and friends basic insight and understanding of what it is like. That is why I wrote Come Home Ella…

But first, here is the story of my own NICU journey…  

It was around 2am on 31st July 2013 when my dreams were interrupted by a nightmare of gushing water and sopping wet sheets. My waters broke… but I’m not due for another 3 months!  I must be dreaming… 

I made the hasty decision to drive myself to hospital, leaving my two blissfully sleeping young boys with their extremely bewildered Dad. The streetlamps blurring past on the deserted avenue gave a surreal sensation of moving through an underground tunnel. Surely this is a dream! 

Utterly confused I parked the car and hobbled to the hospitals front entrance. I pressed the afterhours intercom…once… twice… three times… where is everyone!? I knocked loudly on the locked glass doors… it looks deserted! In-between tears I pressed the after-hours intercom continuously until someone finally answered. Ok, calm down, help is on the way, any minute now I will see the man on the other end who says he will meet me at the entrance.  Any minute now….  I tried the buzzer again, the same man answered sounding as confused as I felt, “I think it’s likely you’re at the old entrance; we have recently moved.’ Seriously… what a nightmare! 

News of the new private hospital opening began seeping back into my frantic mind. Luckily, the new location was in the same complex as the old hospital, just a different building. More long minutes passed before a man came into view pushing an empty wheelchair. Gliding through a maze of glass sliding doors and narrow hallways, I am wheeled into a room in the new hospital and helped onto a bed of crisp linen to await my obstetrician. 

Not long after my obstetrician arrived, I learnt of the gaping hole in my uterus, compliments of a fidgety footling breach foetus, with no means of repair. Sympathetically, I am basically told to hold her in for as long as I can!! Hmmm… bed rest for up to 13 weeks with two children under the age of 6 and moving-house in a just few weeks – this is not adding up at all. Wake me up!! 

Two huge steroid shots to the buttocks later, I am being transferred by ambulance to King Edward Hospital and the watchful eye of a leading obstetrician specialising in difficult births. 

I remember the “hospital” smell on arrival… heightened significantly by outrageous pregnancy hormones. A smell I would soon get used to, as I resigned to the fact this will be home for the next few months while my baby ‘amazingly’ continues to develop in a dry, deflated womb.  But hey, there is a crochet group (something I’ve always wanted to learn) – how bad could it be! 

I never did make it to crochet group. Instead, my days involved reading, bad daytime tv, hovering my pen over the custard or ice-cream boxes on my meals card (before eventually ticking both), visits from family and friends, but mostly worrying about what was to come…

Turns out I needn’t had worried for long. Around 7pm on 1st August, exactly one week after I was admitted to King Edward hospital, our baby girl decided it was time to enter the world, at only 28 weeks gestation. Footling breach position did nothing to slow her down, she was coming… fast! 

One-hour prior to this I had been complaining of what I thought was severe constipation pain to some rather unfortunate visitors – oblivious to the fact it was the beginning of labour (my previous two births had been unavoidable c-sections).  Eventually, after much complaining and laxatives later, I was examined and told I was not only in labour but almost fully dilated! 

Before I knew it, I was rolling full steam towards the birthing rooms. After the next vicious contraction, I thought it might be a good opportunity to enquire about my spinal block. With two previous failed attempts at natural births, I had never allowed myself to believe the possibility of a natural birth for my 3rd, even before I found out she was footling breach (one of the most difficult and dangerous positions for a natural birth).  “Oh, sweetheart, there’s no time for that,” a kind nurse pitifully informed me, masking her disbelief I would ask such a crazy thing!

My daughter caused two speeding fines that night; one for my obstetrician who had only left my hospital bedside two hours before and confident all was going well (just prior to when the “constipation” pains started); the other for my panic-stricken husband after hollering for the neighbours to please come watch our boys. At least one of the two made it just in time! 

With great skill and expertise the experienced obstetrician safely brought our baby girl, Mahli Ella, into a world she was so impatient to see. 

I was emotionally and physically wrecked, no wonder things get blurry from this point on, but I do remember being pleasantly shocked by the sound of a baby’s cry. I don’t know exactly what I had expected but the crying made it all seem… ok. 

In burst the husband! The next image I remember was our baby girl literally wrapped in plastic. A normal procedure for micro prems yet disturbing all the same and an image that will stay with me always.

Soon after, my husband and I walked into the Neonatal Intensive Care Unit for the very first time. While it was somewhat strange and daunting, it also felt like a sterilised bubble of protection from the outside world for the tiniest, most precious human being I had ever seen. This artificial womb with its highly capable support system would nurture and help us all through this surreal journey. 

And there she was… tiny, beautiful, simply perfect! This time Mahli was swaddled in blankets and wearing the tinniest little beanie I had ever seen. Hooked up to all sorts of machines, unbelievably fragile but oozing inner strength…she was amazing! Now I really knew it was going to be ok. 

Our journey through NICU was, thankfully, not as precarious as we first may have thought. We encountered the usual three steps forward, two steps back scenario but the amazing NICU nurses did well to ease our minds, assuring us it was all part of the journey. The biggest bump for us was the news of a small heart murmur, leading to the discovery of a minor hole in the heart – that amazingly, with the use of only standard ibuprophen, all but closed over. Unfortunately, only to re-open again a later stage. In the end we were told that a hole of this size will more than likely correct itself and true to that advice, it did. 

While in NICU Mahli had one major de-sat, which is when the baby turns blue from lack of oxygen and cannot breathe. I was not there at the time it happened, which devastated me, and Mahli’s c-pap (breathing device) time had to be increased. A step which was always disheartening when every tiny decrease in c-pap time was such a huge achievement. It was a waiting game indeed but as always, Mahli eventually climbed her way back with no further de-sats. 

Mahli took to breastfeeding sooner than expected – it was an amazing moment and something I had taken for granted with my previous part baby/part leech full termers. The miniscule amount of milk she consumed, compared to the amount I produced was another matter, although an awesome feeling to know the many excessive litres of natural antibody liquid gold, I was pumping every 3-4 hours, day and night, was nourishment for some other babies in the NICU.  

A huge struggle for me in this journey was to communicate effectively with my two older children, 2 and 5 years old. I had, up until now, been lucky enough to work part-time hours and always present for them. They were both showing signs of confusion and frustration – ok so we have a baby sister – but where is she? Why can’t we see her? And why is she always taking mummy away? I was living in a vicious circle of guilt and I was my own worst critique. 

At home, I was never really present, always thinking of Mahli laying lonely amongst beeping machines, her needs being tended to by extremely capable people but not her own mother’s hands. Missing out on essential skin to skin contact (aka kangaroo care.) I often watched other mothers in the ward setting themselves up for the day to cuddle, read and spend every possible moment beside their precious newborn babies. Yes, many of these were first time mothers and it was neither fair, or rational to compare myself to them, or anyone else, but I was not always a rational person at the time. 

At the hospital I would think about my boys… I had too much time to think. Their sad little faces… I know they were cared for and was extremely grateful to have hands-on grandparents and friends only too happy to help, but it wasn’t enough to stop my guilt. Amidst the 8 weeks Mahli was in hospital my husband contracted the flu. I can’t even imagine the angst he must have felt not being able to see Mahli at all for a good 3.5 weeks. Our boys also got sick on and off, as kids do in the winter months. To add to this my own mother fractured her ankle only days after Mahli was born and was on crutches for 6 weeks! 

My 5-year-old was in Pre-primary at the time. I remember driving to hospital one afternoon (I tried to go twice a day, straight after morning school drop off and again late evening) to visit Mahli when a friend called and mentioned our boy’s classroom Open Journey Night. Open Journey Night is where all the work the children have worked hard on for the year is showcased and gushed over by parents or carers being led around by their proud little people. I told my friend I would call her right back, pulled over onto the side of the freeway and really, properly cried. I had completely forgotten! It seems such a little thing now but at the time it was enough to put me over. It was my breaking point that was always going to come and also the moment I realised I had to snap out of robot mode and be present again… be where I am, when I am there. I turned around, picked up my son and went to Open Journey night and didn’t feel guilty for I knew I would do the same for Mahli one day. 

With my husband now back to full health, we began going into hospital as a family, while my husband and I took turns to visit Mahli. The boys were not able to see her but accepted this and were happy to tag along, draw, eat ice cream and play in the hospital gardens. They wanted to see where we went; the place their tiny sister grew stronger every day. It made them happy to know exactly where we were and when we would come back and be as much a part of it as they could. 

Days before Mahli came home we had a combined birthday party for the boys (born 2 years and 364 days apart) with all their friends. The day Mahli finally came home, my 6-year-old said to me she was the best birthday present he got out of anything. Super-duper special! Although I am not sure you would get the same answer if you asked him today, especially if Mahli has been in his room!  

We are now a normal functioning (sometimes functional 😉) family. Mahli turns 7 in August, and the boys 10 and 13 at the end of September. Although we naturally tend not to reflect too much on the past and Mahli’s birth, we will never forget those times and the outstanding, life-saving support we received from the NICU staff at the iconic King Edward Memorial Hospital WA, and the love and support from our family, friends and premature baby foundations. 

Come Home Ella is the book I would love to have read to my boys and Mahli when she was born.  If you wish to purchase a copy for yourself, or someone you know, please click on the link provided to the Empowering Resources website and insert code tinysparksella  to ensure $1 from your purchase is donated to Tiny Sparks WA.  

http://www.empoweringresources.com.au/come-home-ella