The Brightest Brains Trust - Quiz Night Wrap Up

{ T H A N K Y O U }

To all of the amazing people who joined us at our annual Quiz Night on Saturday 21 July, thank you for coming and we are so pleased to hear you all had a fabulous evening!  Congratulations to our table prize winners, head & tails, paper planes and true or false, so much fun was had.

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This event would not have been possible without the generous support of the wider community.  Please join us in thanking:

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Coming up next...

Next month we are honoured to have been chosen as beneficiaries of the Army Art 'Transition' Exhibition.  This fine art exhibition will take place over the weekend of 24-26 August.  Please consider coming along to the opening night of the exhibition on Friday 24 August.  Tickets are available here.  Keep up to date with this event via their Facebook page.

WA Preterm Birth Initiative National Rollout

Right from the start we have known that the best thing for families is for each pregnancy to go full term.   In the unfortunate event that it doesn’t go to plan, then we are here to provide support (practical and peer), education and guidance to help families through this traumatic time.

Professor John Newnham AM together with Deputy Premier, Health Minister Roger Cook MP.

Professor John Newnham AM together with Deputy Premier, Health Minister Roger Cook MP.

In 2013 when we were approached to join the Steering Committee for the WA Preterm Birth Initiative we jumped at the chance.  Being part of the preterm birth community we are great advocates and offered the researchers a unique perspective.  We also knew just how significant the potential impact could be, not just on families in Western Australia but across Australia and around the world.

Professor John Newnham AM and his team at the Women’s and Infants Research Foundation had developed 7 intervention strategies that they believed if implemented effectively, would lower the rate of preterm birth.

He and his team set off around WA educating medical professionals on the intervention strategies.  They launched a public awareness campaign The Whole Nine Months which we assisted with the promotion of.  We know that every day we can prolong a pregnancy is a day a family isn’t worrying in the neonatal unit.  Outcomes for babies are significantly better even if the pregnancy is only prolonged for a few days or a week.  Throughout this roll out we were cheering them on and hoping that the results would be remarkable!!

Professor John Newnham AM, Deputy Premier, Health Minister Roger Cook MP, Amber Bates Chairperson & Co-founder Tiny Sparks WA and Adison Bates.

Professor John Newnham AM, Deputy Premier, Health Minister Roger Cook MP, Amber Bates Chairperson & Co-founder Tiny Sparks WA and Adison Bates.

After just 1 year of implementation we were delighted to hear that the rate of preterm birth in WA had been reduced by a staggering 8%.  That was a whopping 200 families saved from the impact of prematurity.  Saved from watching their baby fight for life in the neonatal unit.  Saved from the developmental challenges and medical fragility that face those born preterm.  WOW!!

This week we were honoured to stand with Professor John Newnham AM and Deputy Premier, Health Minister Roger Cook MP as they announced the national roll out of the WA Preterm Birth Initiative.  What a fabulous day for Australian families!!

These strategies once rolled out across the nation have the potential (if similar results can be replicated) to save thousands of babies from preterm birth each year!

It has been a privilege to play a very, very small part in this program and we will keep cheering and watching the statistics closely.  Prevention of preterm birth is vital.

You can read more about the specific intervention strategies that form the basis of this program here -> http://info.thewest.com.au/westadvertising/feature/20180328/index.html

Dial an Elf

When good people come together amazing things happen!

We are so pleased to announce that we are partnering with Communified Inc for their Dial an Elf program to support our families in more ways that they need during their long neonatal unit stay.

Established in 2014 the Dial an Elf program has been networking volunteers with families to cook, clean, garden, walk your dog, provide transport and a wealth of other services so that families can focus on their children during long term hospital admissions.
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When your life is thrown into complete chaos by the neonatal unit it is comforting to know you can access volunteers to support you in your journey, so you can maximise time with your baby in the nursery. Research shows when parents are actively engaged in their child’s care the outcomes for baby, and mental health outcomes for parents/carers are improved.

Tiny Sparks WA Co-founder Amber Bates with Communified Inc Co-founder Rhiannon Williams

Tiny Sparks WA Co-founder Amber Bates with Communified Inc Co-founder Rhiannon Williams

All volunteers undergo rigorous screening processes along with training to ensure the safety and wellbeing of your family at all times.  Recognising that the neonatal unit journey does not end the moment you are discharged, supports are able to be continued until you are back on your feet.

We would encourage you to follow them on Facebook here. If you hold a current police clearance and would like to support families in a tangible way please volunteer with them and very soon you’ll be cooking, cleaning, gardening, collecting mail, putting a bin out, driving someone to visit their baby, or helping in another truly meaningful way.

If you are a current NICU family in need please e-mail admin@tinysparkswa.org.au to discuss applying for this program.  Assistance is currently available throughout the Perth metropolitan area and volunteers are currently being sort in the south west.

Dial an Elf we love your work and are proud to partner with you to support our families in this way ❀️❀️

Childcare while on hospital bedrest or in the Neonatal Unit

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Not everyone has the benefit of family and friends to care for their children when they are placed on hospital bedrest or when their baby is admitted to the neonatal unit.  It isn't always financially possible for the husband/partner to stop work to care for other children and their wife/partner for an indefinite period either.

Some families may be eligible to apply for the Special Child Care Benefit before 2/7/18 renamed the Additional Child Care Subsidy after 2/7/18 and we have collated some of information here for you.  You should speak with your hospital social worker to obtain the necessary support for your application.

Special Child Care Benefit before 2/7/18

  • Special Child Care Benefit (SCCB) is available for a child whose family may be experiencing hardship- it helps by maintaining access to child care while the family adapts to the new circumstances.

  • SCCB can be used even if the family is not eligible for Child Care Benefit or has not yet been assessed for eligibility.

  • Staff at a child care service can complete a SCCB application form and then they email it to the CMMS (Child Care Management System)

  • Claim limit of 13 weeks per financial year- any claim above 13 weeks needs to be approved by Dept Human Services.

  • Claim For Special Child Care Benefit Form

  • Special Child Care Benefit Fact Sheet

Additional Child Care Subsidy after 2/7/18

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  • The Additional Child Care Subsidy is a top up payment in addition to the Child Care Subsidy which will provide targeted additional fee assistance to families and children facing barriers in accessing affordable child care.

  • The Additional Child Care Subsidy (Temporary Financial Hardship) will provide short-term increased child care fee assistance to families who are experiencing significant financial stress due to exceptional circumstances, to ensure continuity of care.  Eligible families will receive a subsidy equal to the actual fee charged, up to 120% of the Child Care Subsidy hourly rate cap, for up to 100 hours per fortnight. The family will not have to meet activity test requirements. This support will be provided for a maximum of 13 weeks per event.

  • Additional Child Care Subsidy (Child Wellbeing) will provide assistance to families that are in circumstances that require practical help to support their child's safety and wellbeing.

  • Eligible families will receive a subsidy equal to the actual fee charged, up to 120% of the Child Care Subsidy hourly rate cap, for up to 100 hours per fortnight. The family will not have to meet activity test requirements.

  • The Additional Child Care Subsidy (Transition to Work) will provide support to families who are transitioning to work from income support by engaging in work, study or training activities.

To be eligible for Transition to Work, families need to:

receive one of the following payments:     

  1. Parenting Payment
  2. Newstart Allowance
  3. Disability Support Pension

  4. Youth Allowance

  5. a payment prescribed by the Minister's rules.    

have a Job Plan in effect (employment pathway plan within the meaning of the Social Security Act 1991 (Cth), or a participation plan under section 94B of the Social Security Act 1991 (Cth).

Transition to Work provides a subsidy of 95% of the actual fee charged up to 95% of the Child Care Subsidy hourly rate cap. Hours of assistance will be determined by the Child Care Subsidy activity test. Individuals may continue to receive the subsidy for 12 weeks after they gain employment and their income support payments cease.

The New Child Care Package Overview can be found here with further information.

Alexander

For Lance and his wife Sonia, Alexander's early arrival was a total shock!  Having watched his son fight for life in the neonatal unit Lance was inspired to make a difference and is currently training for White Collar Boxing Fight Night #11 being held at the Perth Convention and Exhibition Centre on June 15.  Tiny Sparks WA are directly benefiting from this event and we encourage everyone to come and cheer on Lance, and all of the other fighters.  You can buy your ticket here.  

Alexander's story as written by Mum Sonia is below.

The early arrival of Alexander

We were having a most uneventful pregnancy. When I was 28 weeks pregnant, one Sunday I started having some tummy pains, thinking I’d eaten something unfortunate. They continued on the Monday and I left work thinking, β€˜that is a bit weird, I’ll call the hospital on the way home’. That was a Monday afternoon and I didn’t go back for 6 months.

The midwive’s view was I might have an β€˜irritable uterus’ (!), to go home, drink some water and have a lie down and call her back if they got worse. By 9pm that night, I had a gut feeling something was up and I had Lance take me to hospital. In amongst some serious eye rolling and lack of interest among the midwives (you could just here them thinking β€˜first time mum overreacting’). Until they put me on the machine to see what’s going on and their faces changed quite abruptly with a β€˜I’m going to go and phone your Dr’. When he appeared 10 minutes later, we knew something was up. Although I was contracting, I wasn’t dilating. A leisurely ambulance ride to KEMH, a very late night for us all and quite a few pills and jabs, I was settled in KEMH where I stayed until the following Friday, the contractions having settled down quite a bit. I’m not sure whether the staff were hopeful, or whether they had a feeling of what was going to happen, or whether we were just incredibly naΓ―ve, but we didn’t get a real sense of the traumatic events which were about to unfold. 

The contractions came back mildly on the Saturday and we had another trip to KEMH that Saturday afternoon only to be discharged again as I wasn’t dilating and the contractions didn’t seem to be getting worse. They continued to tell us we weren’t in actual labour and not to worry. 

I had a quiet day on the Sunday, only really getting off the couch to pot out some new plants I’d bought and then my thoughtful husband, trying to distract me from the increasing cramps and anxiety, thought a walk around the block would assist! After all, we weren’t β€˜in labour’… I didn’t go very far and was pretty exhausted so we went home. Needless to say, the contractions started to increase but again, having to be told we weren’t β€˜in labour’, we didn’t rush off to hospital. Instead I cooked perhaps the best salmon dish I’ve ever cooked (and subsequently lost the recipe). A couple of hours later about 9pm, the pains were just too much and I told Lance to take me to the hospital. Between leaving our house and the 10 minute drive to hospital, the labour pains became intense to say the least. Poor Lance was having to try and keep me calm and drive as quick as he could – it was like a scene from a movie! 

When we got to the hospital the poor orderly didn’t know what to make of this screaming banshee woman, and rushed me up to the maternity ward. By this time the contractions were almost constant. Needless to say, all hell broke loose as this maternity ward was definitely not used to 29 week pregnant women presenting in full labour. Our incredible doctor turned up in minutes and calmed the scenario but with a β€˜you are 10cm dilated, this baby is arriving tonight’. Not the words you want to hear. 

This time I got a very, very quick ambulance ride over to KEMH with midwife in tow and the last thing the Dr saying before he closed the doors was β€˜try not to push’. Lance tried to follow them but said he lost them when they were going over 120km/hr through the tunnel and through red lights. 

When we got there we had an army of doctors and nurses waiting, each trying to explain what was about to happen and what they were going to do with the baby once he arrived etc. I was still contracting and really not in a great space, so poor Lance was having to deal with difficult questions and explanations. 

Once I’d had an epidural, I seemed to become human again, and they recapped what they’d gone through. It was a very, very sobering experience, to be told your baby β€˜should’ be ok, but they are going to have to put him on a ventilator as soon as he comes out and take him straight to intensive care. 

When you see babies being born on TV, they come out a bit purple and usually screaming. We got a very small, not moving, silent baby, who was quickly whisked off to the trolley with us wondering whether he was even alive. A tiny squeak reassured us he was and Lance smiling and saying β€˜it’s a boy’! A team of doctors and nurses surrounded him and escorted him, with Lance, up to the NICU, where I wouldn’t see him again for what felt like an eternity, but was only about 3 hours. 

Despite the nurses telling me to get some rest (you get some rest after that!), one nurse took pity on me and wheeled me down to the NICU about 6am, after a strict hand washing, to see my tiny baby boy covered in cling wrap – and tied up to all these wires seemingly powered by this giant machine and beeps and noises everywhere. Alexander also had an incredibly bruised face – he looked like he’d gone 6 rounds with Rocky – as he had been a face presentation because of his small head size and the forceps had injured his left eye a little. This is not what you expect to be greeted with when you deliver a baby. 

Having been sent home with instructions also to rest (yeah right), Lance was also back at Alexander’s side minutes after I’d got there, and we could finally meet our son together. I think we were still in shock and it was hard to comprehend everything the nurses were telling us. But we took comfort in knowing he was stable and he was a good weight at 1.3kg (3 pound) for a baby born at 29+3 weeks. 

That gestation – β€œ29+3 weeks” becomes tattooed to your brain and it almost becomes a label for you and your baby to wear while in β€˜hospital land’. 

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The following days and weeks almost blur in together but consisted of trying to get into a bit of a routine of drop Lance at work – head to hospital – sit beside crib – pump every 3 hours – more sit beside crib – short break at the cafeteria for lunch – more sit beside crib – more pumping – more sit beside crib – pick Lance up from work – find something for dinner – head back to hospital together for a few hours – home – more pumping every 3 hours. Repeat. Every day felt like 100 years. Every beep in the room made your heart stop until you realised it was someone else’s baby de-statting and you were grateful it wasn’t yours. You were so grateful to do Cares as it meant you got to actually touch your baby properly (even though you were too scared to move them in case they broke) and actually partially feel like you were being a mother. 

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Kangaroo cuddles were the highlight of each day. It was always a balance of which nurse was on duty as to how long the cuddle was. It was so incredibly frustrating and heart breaking not to be able to pick your baby up whenever you wanted to. We constantly had to fight with the nurses to hold onto our baby for a bit longer, with the nurses saying β€˜his temperature will drop’ or β€˜you can’t overstimulate him’. I got to the point that when I got there in the morning, I’d ask to have him for a cuddle and then I’d just hold onto him for as long as my bladder would last. Usually I managed a couple of hours, with a few dirty looks from nurses when I refused to give him back, and a few notes written up in my book so I’m told! Keeping in mind he was always stable and he wasn’t sick – just small, so my heart told me  he was better on me than in a crib. When he was with me his temperature was always more stable, never had a de-stat and you could tell he was happier. I certainly was. I think it also helped get us through a lot quicker. That, and they had an influx of premmie babies in that November, so we were discharged back to our original hospital when Alexander was still 34 weeks gestation (4 weeks after being born), to β€˜fatten up’ as the doctors said. 

When we arrived at our original hospital, the nurses weren’t very interested in us except as an extra hassle as then someone had to man the nursery 24/7! As a consequence, I could cuddle him, feed him, bathe him, any time I liked and there were no nurses there telling me what I could and couldn’t do. After asking permission to pick him up the head nurse actually said (and I’ll never forget her words) β€œHe is your baby, do what you like”. I didn’t know whether to cry or hug her. 

Close family members were able to come and meet him and it was actually becoming real we had a proper baby. We hit the 2.5kg mark on Saturday, 10 December and at 35.5 weeks gestation we were allowed home. It was a 44 degree day and we were panicking that we were actually allowed to take this baby – now what we were going to do with him? 

We survived, but it was a tough road. We were still limited in where we could take him, who we could let cuddle him, so we still couldn’t be as free as other first time parents and that was tough. 

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We were so, so incredibly lucky though. Alexander just grew and grew, he eventually hit his milestones and continues to do so. We have managed to avoid any serious long lasting effects of him being born premature, and at 4.5 years old he is starting to overtake his friends in height and weight. He is very resilient, very smart and a kind and sensitive little boy, who is our super hero.