LLTF Newsletter Oct 2013 by Life's Little Treasures Foundation

Newsletter

OCTOBER 2013

Our Mission Our mission is to ensure that no family endures the difficult and life changing experience of having a premature or sick baby without easy access to critical information and community support to help them navigate through it.

news. updates. features. events.

The Life’s Little Treasures Foundation (LLTF) is a national organisation providing comprehensive information and support to families with premature and sick babies, helping to ensure optimal child and family health and wellbeing.

Our Vision • Free hospital survival folder A Guiding Hand for families in NICU & Special Care for EVERY family going through this journey • Using innovative technology to provide information, education and support to families • Collaborative partnerships with researchers and organisations that assist families • Greater awareness in the community

The Life’s Little Treasures Foundation is an independent charity reliant on philanthropic and corporate funding and currently receives no government funding.

Walk For Prems 2013 Wow, can you believe a year has nearly gone by since the last walk, and on Sunday 27th October we’ll be doing all over again, holding the 4th annual charity Fun Run / Walk – Walk for Prems. A day when we get together at various locations around Australia to celebrate the lives of our Little Treasures. As the Foundation receives no government support, this is our biggest fundraiser of the year and we depend on it to raise the vital funds that will enable us to continue producing and running the programs we currently have for families of sick and premature babies all around Australia. It’s a tough year for everyone and charities are finding it hard too but we do appreciate you getting behind us and either registering to come to the walk or donating what you can, every little bit helps. To find out more about the walk and to register go to www.lifeslittletreasures.org.au/walk. Let’s have some fun on the 27th and celebrate our Little Treasures!!

contacting the Life’s Little Treasures Foundation The Life’s Little Treasures Foundation PO Box 476, Chadstone Centre RP VIC 3148 Phone: 1300 MYPREMMIE / 1300 697 736 Email: contact_us@lifeslittletreasures.org.au Web: lifeslittletreasures.org.au facebook.com/ lifeslittletreasuresfoundation twitter.com/ @LifesLittle

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

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President’s Welcome Dear Reader I can't believe it's already October, I hope this newsletter finds you all well – we have been living life in the fast lane this year. Each year seems to go faster and faster! Sadly we said goodbye to one of our newsletter editors, Natalie Smith. Natalie was a wonderful member of the newsletter team and contributed some great articles over the years. Thanks Natalie for all your hard work, we so appreciated it. Since the last newsletter, so many things have happened that I hope to remember them all. We kick-started off the New Year with the move to our new offices in Hawthorn, giving our families and volunteers a place to go to. If you are in the area, come in for a cuppa and say hello. We brought on some new team members, to help us with the huge workload and will introduce them to you over the coming months, in this edition you meet Karen Peters, our Hospital Liaison Coordinator. This year has also seen a growth in our programmes and services. Since the launch of our hospital resource folder A Guiding Hand for Families NICU & Special Care in September 2012, we have assisted over 5,000 families across 60 hospitals in Australia, with more hospitals coming on board to distribute it. We recently launched our Books and Bubs Reading programme to provide families with an opportunity to bond with their babies whilst in hospital. We hope that through this programme, parents will be able to create a sense of intimacy and normality that will help them engage with their babies and improve their outcomes. Big thanks to all the families who have donated books for the program to date. Over the next few remaining months, we are also relaunching our Parent Support Network Programme and

Family Assistance Programme. Stay tuned for more details in the next newsletter. On the funding front, we were delighted to announce our first corporate partnership with Goodyear Australia, who have very kindly donated $1 for every one of their Goodyear Assurance TripleMax tyres sold, as part of their National Treasures drive and today has raised over $30,000 so far for the Foundation. More recently our partnership with the piggy of the moment, Peppa Pig herself! Peppa has chosen LLTF to be her charity of choice in Australia and is busy planning lots of fun for all the kids (and parents) out there. Keep an eye on our website and Facebook page for all the fun things organised for rest of the year and 2014. We look forward to great partnerships with both. I’d also like to take this opportunity to also thank all those families who have fundraised for us throughout the year, we couldn’t do it without you.

“Since the launch of our hospital resource folder A Guiding Hand for Parents in NICU & Special Care in September 2012, we have assisted over 5,000 families across 60 hospitals in Australia”.

Last but not least, Walk for Prems is upon us – Sunday 27TH OCTOBER! We have less than 2 weeks to go and are in full mode for organising this year’s event at 7 different venues throughout Australia! Each year, the event gets bigger and better and this year is no different. We have lots planned for the day with some surprises in store. So if you haven’t registered yet, register NOW at www. lifeslittletreasures.org.au/walk We hope to see you there for a day of family, fun and laughter. Love and light,

Parool Shah Co founder/Director LLTF

DISCLAIMER: All material on this newsletter is provided for your information only and may not be construed as medical advice or instruction. No action or inaction should be taken based solely on the contents of this information; instead, the Life’s Little Treasures Foundation suggests that readers should consult appropriate health professionals on any matter relating to their health and well-being or the health, development and well being of their children. The information and opinions expressed here are believed to be accurate, based on the best judgement available to the authors, and readers who fail to consult with appropriate health professionals /authorities assume the risk of any injuries. In addition, the information and opinions expressed here do not necessarily reflect the views of every contributor to the LLT newsletter.

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

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Welcome to our new partners... Peppa Pig comes to Australia and joins forces with the Foundation The Foundation and Australia’s favourite little pig - Peppa Pig have recently come together to form a charity partnership. We can tell you there have been some very happy Little Treasures in our homes when they heard the news! We are absolutely thrilled that Peppa chose the Foundation and look forward to a wonderful partnership where Peppa will be helping us to spread the word on premature birth and raise vital funds needed to continue providing our services across Australia. Keep an eye out, you never know, where she might pop up!

Goodyear Cares In July 2013, the Foundation and Goodyear tyres launched a partnership to help some of Australia’s most vulnerable treasures - babies who are born premature or sick. As part of Goodyear Australia’s ‘Protecting Australia’s National Treasures’ project, the company will donate $1 for every Goodyear Assurance TripleMax tyre sold across the Beaurepaires and Goodyear Autocare store networks during 2013 to Life’s Little Treasures. To date this program has raised over $30,000, an amazing amount, we are so grateful for. We very much look forward to working with the Goodyear team.

We are so thankful to Goodyear and Peppa Pig for coming on board and helping us help families across Australia who have had a premature or sick baby. It’s great to see corporates acknowledging these families and the journey they experience. With these partnerships we hope to bring awareness of premature births to an all-time high and raise funds to help support the thousands of families who need support. If you would like to chat to us about becoming a corporate partner or know someone that would, then please email: charlotte@ lifeslittletreasures.org.au or call 1300 697 736

Launch of our new video Earlier this year, we launched our new promotional video. As we grow we found that we needed a professional and engaging way of informing stakeholders about who we are and what we do for families of premature or sick babies. We were extremely lucky to find Keith Webb, Managing Director of Image Control. He and his staff worked tirelessly to help us to film and produce our new promotional video. The production involved a film crew visiting two hospitals as well as interviewing six families regarding their journey through NICU and Special Care. If you haven’t seen the video yet we highly recommend you visit:

www.lifeslittletreasures. org.au/about-us We would like to thank everyone involved in producing this video including: Shusannah Morris, Parool Shah, the Gheno family, the Crawford family, the Oliver family, the Mitchell family, the Vander Weele family, the Bavage family, Dr Peter Anderson, Box Hill Hospital, The Royal Women’s Hospital and especially Keith Webb and Image Control. If you have any video production needs we highly recommend Image Control www.imagecontrol.com.au

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

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Bereavement & Grief In this issue we look at two very personal topics Bereavement & Grief, but that over 2000 families experience in Australia every year.

he Foundation hears from lots of families who have gone through this traumatic experience, who don’t know where to turn too or who they can ask for help.

differently even in the same families, but it is important to respect each other’s way of grieving.

We show case two very important charities working hard in Australia to provide support and information for these families.

Grief can seem like a roller-coaster ride, keeping a continuing bond with your loved one can be very helpful and comforting.

We hear from mum Rebecca, Founder of the charity Yasminah’s Gift of Hope and dad Gary, Founder of the charity Pillars of Strength. They share their stories with us and how from their experiences, they decided to make a difference to other families. We thank them both for taking the time to write their stories for us.

Helping yourself to get by

About Grief What is grief like? Grief is our response to loss. It is the normal, natural and inevitable response to loss, and it can affect every part of our life, but it is varied and different for different people.

About grief When people grieve they are coming to terms with what has changed in their lives. Following loss the grieving person has to relearn the world and themselves because everything has changed. Grief is not an illness. We don’t “get over” profound grief because we are changed both by our love and by the loss of our loved one.

How do we grieve? Everyone grieves in his or her own way. There is no right or wrong way to grieve. Men and women sometimes may grieve

Keeping connected

Grief is like a journey with many pathways and turnings. Here are some suggestions about how to get through some of the difficult times. • Try to defer major decisions for 6-12 months that cannot be reversed, e.g. disposing of belongings • Keep a diary or journal • Create a memorial – do or make something to honour your loved one • Develop your own rituals - light a candle, listen to special music, make a special place to think • Allowing yourself to express your thoughts and feelings privately can help. Write a letter or a poem, draw, collect photos, cry... • Exercise - do something to use pent-up energy, walk, swim, garden, chop wood

• Draw on religious and spiritual beliefs if this is helpful • Read about other people’s experience - find books and articles • Do things that are relaxing and soothing • Some holistic or self-care ideas that may assist include meditation, distractions, relaxation, massage, aromatherapy and warmth • To help with sleeplessness: exercise, limit alcohol, eat well before sleeping, and try to have a routine. Note: Further Information on Grief can be found on the Australian Centre for Grief and Bereavement websitewww.grief.org. au/grief_and_bereavement_support/ understanding_grief/about_grief

“Life will eventually have meaning again, although our loss will always be part of us.”

Grieving differences between men & women He Sighs.......................................................She Cries HE Big Picture.............................................SHE details HE Thinks......................................................SHE feels HE Logical...................................................SHE Intuitive HE Copes internally..................................SHE Copes Externally

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

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Supporting grieving children Living with the pain of loss For some children, their loss or bereavement can be the first time that they have experienced profound abandonment. Fears may arise that they might be similarly abandoned again. Don’t underestimate the impact a loss has on a child even if they do not respond as expected.

Children express their grief differently Children may not have the ability to name or express their feelings because they are not visible or concrete. Therefore, children often express their grief through their behaviour such as separation anxiety, crying, withdrawal, bed wetting, disinterest in food, or disruptive behaviour at school.

Don’t hurry grief Psychological healing time is different to chronological healing time. Children will often break their feelings up into manageable amounts, as it’s difficult for them to tolerate ongoing, intense pain. Therefore, it is not unusual to see a variety of emotions unfold in a short span of time as they slowly work through their grief.

Role models There is no need to teach children how to grieve; their strong sense of intuition is usually their best guide. Therefore, it is important that those around them are able to express their grief in a healthy, open manner.

USEFUL LINKS: Children Grieve Too is a useful article that looks at the different ways children grieve, and provides tips around how parents can provide support. www.grief.org.au/grief_and_ bereavement_support/understanding_ grief/supporting_children/children_ grieve_too Here for Each Other: Helping Families after an Emergency Created by Sesame Street, this great resource guide has been revised for Australia in collaboration with the Victorian Department of Education and Early Childhood Development.

www.eduweb.vic.gov.au/edulibrary/ public/commrel/emergencies/ eachother.pdf The Rosemary Branch Newsletter: Children and Grief Edition, The Spring 2012 Edition of the Rosemary Branch looks at the topic of Children and Grief. www.grief.org.au/grief_and_ bereavement_support/understanding_ grief/supporting_children/rosemary Note: Further Information on Support for grieving children can be found on the Australian Centre for Grief and Bereavement website: www.grief.org.au/grief_and_ bereavement_support/understanding_ grief/supporting_children Grief & Support for grieving children articles: Source: © 2013 Australian Centre for Grief and Bereavement. The Australian Centre for Grief and Bereavement is a not-for-profit organisation providing a range of education, counselling, research and clinical services in the field of grief and bereavement. www.grief.org.au We would like to thank the Australian Centre for Grief and Bereavement for their kind permission to use their information in this edition of the LLTF Newsletter.

If baby is sick in hospital Facing hard decisions Hearing that it would be best to limit or stop your baby’s intensive care is devastating, and very few parents feel emotionally prepared to deal with this. Take your time and talk to the nurses and doctors. With their experience and knowledge, they can be invaluable allies at such a crucial time.

baby. Staff may ask if you wish to wash and dress your baby. Parents choose to keep reminders of their baby’s life in different ways. Most units will take a photo of your baby, if you give permission.

Making arrangements It varies in each hospital, but in most units you should be able to stay with your baby for as long as you like. Many hospitals have multi-faith prayer rooms and chaplains to offer their support if or when you need it. You can take your baby home after the death certificate has been issued. You can also arrange for your baby to go to a funeral home. The hospital may also help you with the funeral. Source: © Copyright Bliss 2012 reproduced.

Further information can be found at: www.bliss.org.uk/help-for-families/ bereavement

Stages of grief and mourning To trivialise or attempt to categorise coping with the death of a child is no simple or linear task and in all cases families should seek support and advice from relevant groups and professionals. A common way of categorises the process of grieving is by using 5 categories;1. Denial Is the feeling that what is occurring is not real or has no effect on your everyday life.

2. Anger. Occurs the moment when the individual realises the situation is real and is having an impact. This stage may cause people to feel the world is unfair or that the situation needs to have someone to blame.

Caring from the start Some parents who have been through this experience say they did not want to get too attached because they were afraid their baby would not survive. Some parents who did get involved in their baby’s care, even though their baby eventually died, said that knowing they had done all they could while their baby was alive helped them to come to terms with their loss.

If your baby passes away The neonatal unit may have a room where you can be alone with your

The Stats: • 1 in 5 pregnancies in Australia ends in miscarriage, stillbirth or neonatal death • Over 2000 babies are stillborn each year in Australia. 6 per day • Preterm birth (birth before 37 weeks gestation) is the leading cause of newborn death

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✶

6 ✶ ✶ 3. Bargaining. When a child has died bargaining is a significant stage of grief as you begin to think you would trade your life to give your child a chance to live.

4. Depression. Acknowledging feeling sad and giving the event an emotional outlet is a vital stage in moving forward. There is a significant difference between feeling depressed and working through grief compared with clinical depression which needs medical help and support.

5. Acceptance When a person has finally worked through the events, emotions and their loss they are able to accept what has occurred. That does not mean forgetting the child, acceptance allows people to begin to interact with family and friends again in a meaningful way and begin to think about the future.

Getting Help The loss of an infant is difficult to deal with for both parents and those around them. There are many ways parents can choose to honour the memory of their baby, not just through a funeral or memorial service. These can be as simple as writing a letter or diary to the baby, or collecting things such as ultra sounds or photos and making a scrapbook or putting them in a special box. There are many support services available, as sometimes it is easier to simply talk. (Support services list following the Dads story)

When to seek further help You could consider seeking professional help if: • You do not have people who can listen to you and care for you • You find yourself unable to manage the tasks of your daily life • Your personal relationships are being seriously affected • You have persistent thoughts of harm to yourself or anyone else • You persistently over-use alcohol or other drugs • You experience panic attacks or other serious anxiety or depression • Over time you remain preoccupied and acutely distressed by your grief • You feel that for whatever reason, you need help to get through this experience.

“Climb high, climb far, your goal the sky, your aim the star” Note: Further Information on When to seek further help can be found on the Australian Centre for Grief and Bereavement website www.grief.org.au

Coping with grief and moving on People cope with grief in a variety of ways. The most important aspect when coping with grief is to acknowledge the feeling of loss and talk about how you are feeling. By talking to family, friends and health care professionals further relevant strategies can be adopted, the sense of isolation alleviated. Some people cope with grief by journaling their emotions, sharing their story, others write songs, take up a new hobby or express themselves through art. Regardless of that strategy is used it is important to allow the coping to take as long as required and acknowledge the need to use the emotions to work through the grief. As shown by the various stages of grieving often moving on can be difficult and timely. When moving on from grief parents will have some form of closure at the loss of a child and then prepare a celebration of their loved one. By moving on it does not mean the child has been forgotten.

information and helpful tips. They are a useful resource for those experiencing grief and those who are supporting someone who is grieving, and are a good handout for health professionals to give out to the bereaved. These can be accessed at: www.grief.org.au/resources/ information_sheets Freecall: (Australia wide) 1800 642 066 Email: info@grief.org.au

Ten ways to help the bereaved 1

By present and attentive to the bereaved person.

Allow for moments of silence and reflection.

Listen in a non-judgemental and accepting way.

Avoid clichés such as ‘Think of all the good times’, ‘You can always have another child’.

Mention deceased person’s name and encourage the bereaved person to talk about them.

Offer practical and emotional support such as minding children or cooking a meal.

Australian Centre for Grief and Bereavement The Australian Centre for Grief and Bereavement is a not-for-profit organisation providing a range of education, counselling, research and clinical services in the field of grief and bereavement, for individuals, children and families who need assistance following the death of someone close to them. They provide an excellent suite of grief information fact sheets, available for download for personal use. These double sided, A4 handouts are designed to assist your understanding of the grief experience by providing basic

Understand that tears are normal and healthy part of the grieving process.

Don’t try to fill in conversations with a lot of outside news.

Remember that grief may take years to work through.

Acknowledge anniversaries and dates of significance for the bereaved person.

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

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Rebecca’s Story Yasminah’s Gift of Hope

ust over four years ago I gave birth for the second time. I was 37 weeks pregnant and about to became a mum again. This makes my heart swell with love. I inhaled and exhaled with a purpose to deliver my second child, my first little girl physically into this world. I was guided and supported by my husband and my midwives through the birth of my daughter. The passage of birth, a new precious life, that was over before it had begun. With one final force of air through my lungs and pushing with all my strength, my eyes closed for fear of losing my strength, forgetting this memory, my daughter was born into this world, never to take a single breath. In that single moment of time my daughter Yasminah Ann, took my breath away. Bright red lips, thick black curly hair and perfect in every way. Birth is supposed to be this big beautiful moment of pure happiness, joy, and hope. It still was all these things and more. The elation of meeting our beautiful little girl that had been wriggling around, gently tugging at my heartstrings for 9 months was overwhelming. I felt happiness and nothing but pure love for my daughter. I still feel this way. I will always feel this way. I don't think of her with sadness. How can I be sad about someone so beautiful? I think of Yasminah with love and peace in my heart. I can close my eyes and pull myself back into that moment in time, where everything stood still. My daughter Yasminah may have been born still, but it is because of her that I’ve been able to help over 8000 families by providing them with Yasminah’s Gift of Hope. Yasminah’s Gift of Hope was established as a voluntary nonprofit organisation in memory of my daughter Yasminah Ann Aziz who was stillborn on the 26th March

2009. Yasminah’s Gift Of Hope provides the Premmie Gift Of Hope journal, which was developed with the assistance of a very good friend Julia Toivonen from Lil’ Aussie Prems Foundation. Each journal is donated in honour of another premature baby, filled with helpful articles about premature birth, pages to record each day in the NICU or SCN and are specifically designed to be placed inside the pocket of your child’s record book given to you at the hospital. It was officially launched on November 17th 2011 coinciding with World Prematurity Day. It ensures parents receive early, ongoing support, information and an opportunity to create lasting memories and keepsakes of their time with their child to treasure forever. I’ve always kept a journal and I have many journals but my most treasured journals are those of when I was pregnant with my children. Yasminah's journal is still something that I only occasionally open up to read. There is raw emotion, memories and pain sprawled across the pages. The days following her death, were very dark filled with questions, anger, tears, and feelings of loneliness, depression and helplessness. But writing my way through my grief, three things were very clear. The profound love I have for my child, hope for the future and support from those around me. We provide Bereavement Gift Of Hope Journals that are hand decorated by our dedicated team of volunteer journal designers to families that loose a child to stillbirth, SIDS or neonatal loss via Allied Health Services across Australia. Whilst our journals are pretty to look at, they also have a practical meaning; they are a Gift of Hope. A way to help families, heal through reflective journal writing. On the 1st June 2009 we found out I was

pregnant again, with identical twins. As I was classified as a high risk pregnancy and so had Fortnightly growth scans to closely monitor their development. At 32 weeks our rainbow baby girls were born 9 weeks before they were due. Aisha Ann Aziz was born first at 11:53pm on the 16th December 2009, weighing a tiny 1554grams. Aaliyah Ann Aziz was born next at 11:55pm on the 16th December 2009, weighing 1730grams. They spent a month in hospital before coming home. Rainbow babies: In some circles, babies born to families after the loss of a child are referred to as "Rainbow Babies." The idea is that the baby is like a rainbow after a storm. "Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of colour, energy and hope. cont...

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Services you can turn to for help GRIEFLINE T: (03) 9935 7400 (24hr) griefline.org.au Phone counselling between 12 noon–3am, 7 days. Online counselling through website.

Aaliyah (top) and Aisha (Above) Aisha and Aaliyah brought back happiness to our lives and filled it with love and hope. Following my experience in the NICU with Aisha and Aaliyah Yasminah’s Gift of Hope have provided over 8000 Gifts of Hopes to families, introduced our Cuddle TIME Cold Cot Program and recently purchased a Twin Bassinet for Westmead NICU where Aisha and Aaliyah were born. If it was up to us, Yasminah’s Gift of Hope wouldn’t exist. We wouldn’t be doing the work that we do. But while families suffer through the loss of their child or ride the roller coaster of the NICU after premature birth, we will work to break the silence for babies born too soon, raise awareness and provide support via a Gift of Hope so no family has to go through it alone.

To visit the Yasminah’s Gift of Hope website or chat with rebecca go to: www.ygoh.org.au

AUSTRALIAN CENTRE FOR GRIEF AND BEREAVEMENT Freecall: (Australia wide) 1800 642 066 Email: info@grief.org.au www.grief.org.au The Australian Centre for Grief and Bereavement is a not-for-profit organisation providing a range of education, counselling, research and clinical services in the field of grief and bereavement, for individuals, children and families who need assistance following the death of someone close to them. SANDS 13 000 SANDS 13 000 72637 (24hr) sands.org.au Support and understanding after the death of a baby, from conception through to infancy, including ectopic pregnancy and medical termination. Run by trained volunteers who have also lost a child. SIDS AND KIDS BEREAVEMENT SUPPORT 1300 308 307 (24hr) sidsandkids.org/ bereavement-support Supporting families who have experienced the sudden and unexpected death of a baby or child during pregnancy, birth or infancy. YASMINAH’S GIFT OF HOPE ygoh.org.au contact@ygoh.org.au Yasminah’s Gift of Hope offers hope, light, love and

happiness to families who experience the miscarriage, premature birth, neonatal loss, stillbirth or infant loss of their child or diagnosis of a congenital abnormality during pregnancy with early ongoing support, understanding and a gift of hope. PILLARS OF STRENGTH T: 0423 028 751 Email: info@pillarsofstrength. com.au Providing ‘Time Out’ & support to bereaved Dads and to Dads while their child is sick in hospital”. Pillars of Strength’s purpose is to provide dads with support and ‘Time Out’ while their baby is sick, and also to bereaved dads after the loss of their baby. TUMMYBEAR tummybear.com.au tummyb@optusnet.com.au Cloth keepsake dolls handmade especially for premmie families, custom made to your baby’s birth measurements and weight. KEEP IT UNIQUE KEEPSAKES meagan@ keepituniquekeepsakes. com.au keepituniquekeepsakes. com.au 1300 885 261 Beautiful personalised jewellery, unique keepsakes and custom made gifts, honouring mother, baby and family. HEARTFELT 1800 583 768 (24hr) heartfelt.org.au Email your state @heartfelt.org.au (e.g. vic@heartfelt.org.au) Free, compassionate portrait sessions, by professional photographers, for families

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of premature or seriously ill babies or children, and for babies who have become angels. Heartfelt’s lines are open 24-hours because they understand that time can be crucial in some cases. TINY D’s PHOTOGRAPHY Katia Da Santis www.tinyd.com.au www.facebook.com/ TinyDsPhotography Tiny D’s Photography for miracle babies provides photography services for newborns who have to spend time in NICU or Special Care nurseries. Their aim is to provide you with a beautiful record of your precious little ones first weeks.

Clothing for your Little Treasure EARLYBIRDS 1800 666 550 (03) 9804 7668 earlybirds.com.au info@earlybirds.com.au Clothing for premature and small babies, designed to provide maximum comfort and ease of dressing, and to fit around any monitors your baby might be attached to. Earlybirds’ clothing can be sized by your baby’s weight, length, and head size or foot length. Buy online or by phone, or visit their website to locate a stockist near you. UNIQUE GOWNS BY DANA T: (03) 9748 8790 0414 306 416 (24hrs) www. uniquechristeninggowns.com Christening and angel gowns (for babies who have become angels), sized down to 20 weeks. Gowns can be sent by Express Post anywhere in Australia, or parents can pick up from UGBD’s showroom in Hoppers Crossing, VIC.

Children’s Memorial Gardens VIC BUNURONG MEMORIAL PARK ‘Lullaby Gardens’ and ‘The Avenue of Rainbows’, 790 Frankston Dandenong Road, Bagholme, VIC 3175 T: (03) 9788 9488 bmp@smct.org.au bmp.smct.org.au/burial/ childrens-lawn-graves

ACT WODEN CEMETERY ‘Baby’s Rose Garden’ and ‘Children’s Garden’ P.O. Box 37, Mitchell, ACT 2911 T: (02) 6207 1622 cemeteries@act.gov.au canberracemeteries.com.au

NT DARWIN GENERAL CEMETERY 08 8980 3655

NSW

TAS

ROOKWOOD INDEPENDENT CEMETERY ‘The Baby Lawn’ Off Centenary Drive, Strathfield PO Box 9, Lidcombe, NSW 1825 T: (02) 9749 1744 indcem@ rookwoodindependent. com.au www.rookwoodindependent. com.au

CARR VILLA MEMORIAL PARK ‘Woodlawn Children’s Section’, 36 Nunamina Avenue, Kings Meadows, TAS 7249 T: (03) 6323 3600 carrvilla@launceston.tas. gov.au launceston.tas.gov.au/lcc

Further information on other memorials around the country can be found by contacting the Australian Funeral Directors Association. Level 1, 700 High Street, Kew East, VIC 3102 T: (03) 9859 9966 1300 888 188 info@afda.org.au www.afda.org.au

WEST TERRACE CEMETERY ‘Commemorative Garden’, beautifully designed Baby Memorial created for families to commemorate the loss of a baby. ADELAIDE CEMETERIES AUTHORITY PO Box 294, Enfield Plaza, SA 5085 T: (08) 8139 7400 www.aca.sa.gov. au OurCemeteries/ WestTerraceCemetery/ CommemorativeGardens

Australian government payments Bereavement Payment Helps ease the adjustment to changed financial circumstances after the death of your partner, child or person you were caring for. www.humanservices.gov. au/customer/services/ centrelink/bereavementpayment

Paid Parental Leave Paid parental Leave may still be payable where a child is stillborn or dies. www.guidesacts.fahcsia. gov.au/guides_acts/ppl/ pplguide-9/pplguide-9.1/ pplguide-9.1.3.html

Australian Funeral Directors Association

WA KARRAKATTA ‘Infants Butterfly Garden’, an enchanting memorial garden designed to commemorate the lives of children up to the age of 6. PO Box 53, Claremont Western Australia 6910 T: 1300 793 109 mcb@mcb.wa.gov.au www.mcb.wa.gov.au/ OurCemeteries/Karrakatta/ Memorials

Reference list: www.grief.org.au www.sands.org.au www.ygoh.org.au www.bliss.org.uk/help-for-families/bereavement www.angelbabies.org.au/facts/factsheets www.tommys.org www.au.reachout.com/Working-through-grief March of Dimes - Bereavement & Loss

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

lifeslittletreasures.org.au

Dads need time out too Article: Gary Sillett, Director of the Charity for Dads, Pillars of Strength

Losing a child at birth (or at any time) is one of the most painful and devastating experiences that someone can go through.

adly, so many men, once excited at the prospect of being a dad (many for the first time), never get to experience a “normal” child birth. Some also never get to experience a “normal” fatherhood at all. These men are part of a club that swells by over 3,000 new members each year through stillbirth, neonatal or infant loss alone. Modern society has conditioned men to conceal their emotions as a sign of strength, but a grieving father feels the loss of a child just as keenly as the mother. Although men don’t express themselves like women do, it does not mean that we grieve any less. Whilst the grieving process may be different for men and women the grieving process is often based on individuality rather than gender. However there is a significant feeling that fathers are often forgotten in the grieving process. During the pregnancy and birth of a child a father’s role is predominantly to support his partner emotionally and physically. A father is expected to be the pillar of support (strength) for the mother, extended family and friends. He is also the communication channel to the outside world and on many occasions, if he has other children, he becomes their chief caretaker while his partner recovers from surgery and the birth. Although of course he did not carry the child, there is still a deep bond that reaches a whole new dimension once the child is outside the womb. During the period immediately after loss there is little time for dads to do something for themselves or get support. They feel the need to provide it to everyone else (particularly their partners) to ensure that everything continues in some sense of “normality”. Many men take on the protector role in the family, supporting their wives or partners and not allowing time for their own grief. Even in today’s society, some men find it difficult to express their emotions and feelings can get locked up. Many men need time and space to grieve and this may happen many weeks, months or even years later. For some fathers sadly our role is to support our child’s memory rather than supporting them through life. I am a bereaved dad. My son was born 14 weeks prematurely, and passed away after two days in the NICU at RNS hospital in December 2010.

My son passing changed my world forever. However Fatherhood, once reached, is timeless. Coping with the loss of your child at any time is both emotionally heartbreaking and physically devastating. It is a pain that endures. You never know the moment when your next “down day” will come, no matter how long ago you lost your child. Being in this situation you will find that friends and family always offer support or to do something for you but there really isn’t anything they can do to help you with your grief and the guilt of not being able to do anything to fix things. Fathers tend to take on the practicalities and keep themselves busy. Men also often find that other people ask about how their partner is coping without seeming to realise that they are grieving too. Men may feel helpless when they see their partner so distressed. However, it is important to recognise that although men may not show symptoms of grief they are grieving and need support too. The important thing is to respect and support each family member when they are dealing with their loss. Acknowledge the father and ask how he is going - although it may seem small it will go a long way. Acknowledge him and acknowledge their child and recognise their loss, no matter when it occurred. It’s a loss that never goes away. Affirm his role as dad. Pillars of Strength supports bereaved dads who have lost babies and dads with sick babies in hospital, by providing ‘time out’ (through access to sporting activities and opportunities), in-hospital support, and advice on complementary services and information. Please visit www.pillarsofstrength.com.au for more information. (NB Pillars of Strength is not a counselling service but provides an informal peer support network and respite and support opportunities for bereaved dads who have experienced loss.)

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

lifeslittletreasures.org.au

A Dad hurts too A poem by Judi Walker

People don’t always see the tears a dad cries, His heart is broken too when his child dies. He tries to hold it together and be strong, Even though his world’s gone wrong. He holds his wife as her tears fall, Comforts her through it all, He goes through his day doing what he’s supposed to do, But a piece of his heart has been ripped away too. So when he’s alone he lets out his pain, And his tears come like falling rain, His world has crashed in around him, And a world that was once bright has gone dim. He feels he has to be strong for others, But Dads hurt too, not just the Mothers, He searches for answers but none are to be found, He hides behind a mask when he is feeling down. He smiles through his tears, He struggles and holds in his fears, But what you see on the outside is not always real, Men don’t always show how they really feel. So I’d like to ask a favour of you, The next time you see a mother hurting over the loss of her child, please remember….. A Dad hurts too.

Research and LLTF

Long term outcomes for people born prematurely The Victorian Infant Collaborative Study (VICS) is a long term study of prematurely born infants throughout their childhood and into adulthood. VICS is a collaboration between the Royal Women’s Hospital, Mercy Hospital for Women, Monash Medical Centre and the Royal Children’s Hospital. They have just produced a Newsletter which outlines their findings regarding the long term outcomes for people born prematurely. They have asked for our help is getting the information out to families. We are passionate about making sure families are informed and are very pleased to be involved in distributing this great report. To read about the report go to: www.vics-infantstudy.org.au/index.php/ research-a-publications/latest-newsletter

Research and LLTF

Human Milk Banking Survey We are assisting the University of South Australia to obtain feedback from families in South Australia on their thoughts around establishing a Human Milk Bank in SA.

his project aims to establishing a human milk bank in South Australia’ & aims to document attitudes to establishing a human milk bank in South Australia from three key groups: • Parents who have had a premature infant • Neonatologists • Neonatal nurses and midwives This survey is part of a wider project which will review and scope human milk banking in South Australia. Your input is highly valued. It includes some general background information for statistical purposes and then some questions about your attitudes and thoughts on human milk banking. The questionnaire will take 10 – 15 minutes to complete.

Please read the Letter of Introduction before proceeding to take the survey that is applicable to you. So if you are leaving in SA and would like to take part in the survey go to: www.flinders.edu.au/medicine/sites/ nutrition-and-dietetics/research/milk-banking.cfm This research project has been approved by the Flinders University Social and Behavioural Research Ethics Committee (Project Number 6168). For more information regarding ethical approval of the project the Executive Officer of the Committee can be contacted by telephone on 8201 3116, by fax on 8201 2035 or by email human.researchethics@flinders.edu.au.

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

lifeslittletreasures.org.au

Innovations The Life’s Little Treasures Foundation is engaging a global community with 6,000 families in more than 56 countries downloading our two i-phone apps. The greatest uptake has been in Australia, United States, UK and Canada. These apps are a global first for the premature baby community. The Life’s Little Treasures Foundation have had some fantastic media and feedback on the apps from both professionals and families around the world. It seems these apps are filling a much-needed gap in the market.

Download now FREE from itunes or soon through Android stores!

NICU Words The NICU Words app is a glossary designed to provide clear explanations of medical terms, medical machinery and medical roles in the NICU (neonatal intensive care unit) and SCN (special care nursery).

Our Online Resource We are very proud of our website, it is Australia’s leading informative online resource, dedicated to supporting families and professionals who care for babies that are born premature or sick. Providing them with a wealth of information to enable them to get through their journey. FOR FAMILIES, the website provides a wide variety of information such as: • Parent stories and photo galleries showing images and detailing remarkable real-life experiences – these are a real source of hope and encouragement for families

FOR HEALTH PROFESSIONALS, our website contains a range of information to assist them in the care of premature/sick babies and their families. It includes: • Listing of community services and resources

• Information on our parent support network

• Do’s and Dont’s for NICU and Special Care staff

• Educational articles on prematurity

• Support in hospital and community.

• Prematurity-related developmental and birth statistics • Guide to community services available to families • Survival guide to NICU and Special Care to help families cope in a world that is new and alien to them • Tips for friends and relatives on how they can help • Informative newsletters covering topics that are specific to premature or sick babies, providing families with up-to-date information and resources • Information on support in the community

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

lifeslittletreasures.org.au

The Premature Baby Journal The Premature Baby Journal app allows families to track their babies’ progress by recording and charting weight, medical statistics, feeding and expressing information and a journal section to record personal thoughts and feelings of the experience. Some of the many features of the app include: • Records baby’s birth details

Hospital folder

• Keep journals for multiple babies • Converts actual age into corrected age (weeks) • Tracks weight, feeding, expressing and temperature in graphs

The Life’s Little Treasures Foundation Hospital Folder is a vital resource for any family currently going through Neonatal Intensive Care Units and Special Care nurseries.

• Tracks milestones and allows you to upload photos

It has been developed through a collaboration with parents who have been through this experience together with leading health professionals.

• Records number of feeds, time of feeds, amount of feeds and method of feed

This resource guide is comprehensive, containing critical information that is designed to assist families in the first steps of their journey. It covers areas families can expect to experience during their journey through hospital.

• Records total feeds given to baby per day, number of expresses and amount expressed by mother

Having been through this journey ourselves we know how difficult it can be to navigate your way through and we hope this will assist families and make this part of their journey easier by giving them a guided hand.

• Journal section for parents to record their emotions and feelings

The Foundation believes that education and information for parents is crucial to get the best outcomes for premature and sick babies; it empowers families and enables them to become their child’s advocate. Once they are home with baby, the Foundation has many more resources they can access to assist them with the next step.

• Set reminder for questions to ask during doctor’s rounds in hospital

What’s covered: • Services provided by the Life’s Little Treasures Foundation • Neonatal care explained Download now FREE from itunes or soon through Android stores!

• Practical tips and information • Kangaroo Care • For dads • Coping strategies • Bereavement • Listing of community services and resources. One of our objectives at the Life’s Little Treasures Foundation is to ensure that every family going through this journey in Australia has easy access to critical information and support during this period in their life. It is our aim that every family be given this hospital folder as part of resources handed out to them in their time in hospital. The folder is currently being distributed to hospitals throughout Australia and the feedback we have been receiving so far is fantastic. To date we have assisted 5,000 families in over 60 hospitals across Australia.

Our Premature Baby Journal app was also voted as a Top 5 app by the Herald Sun in January 2012.

To order the folder for yourself or your families or if you have any questions, then please contact Karen Peters via email on karenp@lifeslittletreasures.org.au or call 0466 406 751

“We are here to provide a shoulder to cry on, an ear to listen & a hand to guide you”.

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

lifeslittletreasures.org.au

Welcome to our new Ambassadors We are very proud to have our ambassadors who play a crucial role in helping us raise awareness of our organisation throughout Australia. With their amazing support, we are able to generate greater awareness in the community of the issues that these babies and their families face. We have been very lucky this year to be able to bring on board three new Ambassadors.

Paralympic Swimming Champion, MATT LEVY

Comic Radio and Television Performer, MATT TILLEY

Matt, is one of Australia’s national treasures, born at just 25 weeks, 15 weeks premature, he is 26yrs old has Cerebral Palsy and is legally blind, he has also survived 46 operations to get him to where he is today. If there’s one thing Matt Levy hates, it’s losing. He is passionate about helping the Foundation raise awareness of premature births and ensuring families get the support they need. Matt will be attending our Walk For Prems event in Sydney on Sunday 27th Oct, so come and walk with him to celebrate our little treasures.

Matt is an exceptional radio talent, with over 20 years on air. The Matt and Jo Show. Over the years he has raised tens of thousands for charitable causes. Matt is an old friend of the Foundation and has helped us out on many occasions over the years, always with a big smile on his face. It’s wonderful to finally be able to welcome him on board as an Ambassador. Both his boys Jack and Oscar were born premature, so Matt has a true understanding of the roller coaster ride families are faced with and is passionate about raising awareness of premature births.

“I’m very honoured to be an Ambassador of the Foundation and I’m passionate about raising awareness of premature births in Australia.”

“The support from community to the families of premature babies is immeasurable & different for every family. Obviously medical support comes first, but time and time again you realise that part of the welfare of any child is derived from the welfare of the parents.”

Medical reporter for Channel Seven, ANASTASIA SALAMASTRAKIS Anastasia has been a journalist for 20 years and is currently a health and medical reporter for Channel Seven in Melbourne. She is mum to prem bub Samuel who was born at 33 weeks after developing a rare and potentially fatal condition called Acute Fatty Liver of Pregnancy. Since returning to work, Anastasia has reported on other families of premature babies and issues relating to premature birth.

“Having a premature baby is daunting and emotional. LLTF provides vital support, understanding and information. I am honoured to be involved with such a wonderful organisation.”

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

lifeslittletreasures.org.au

Let’s have some fun on the 27th and celebrate our Little Treasures!! Help raise funds to support families with premature or sick babies Walk, or run 5km or 10km

WALK FOR PREMS

27TH OCT 2013 7 LOCATIONS NATIONWIDE

Face painting,zle si z sausage en’s & childr ent m entertain

Participate OR donate at: www.lifeslittletreasures.org.au/walk Can’t make it on the day? Register for our Hospital/Home pack

#walkforprems #lifeslittletreasures our sponsors: Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies LLTF_walkforprems2013_board_205.5x270_allstates.indd 1

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Who else has been helping the Foundation lately? Our Ambassador Matt Levy hard at work!

uring September 2013, one of LLTF’s newest Ambassadors, Matt Levy flew from his home town in Sydney to Melbourne to provide a motivational presentation to the staff of Consolidated Property Services. Consolidated Property Services paid Life’s Little Treasures Foundation for the privilege of hosting Matt Levy as their key note speaker at their September staff meetings. During the meeting they heard Matt’s inspirational personal story from life begging at 25 weeks of gestation to now, a 26 year old elite Australian swimmer. Matt Levy’s presentation was a huge success and Consolidated Property Services staff left the room inspired. Prior to Matt’s presentation he attended a LLTF morning tea to meet all of the Life’s Little Treasures Foundation key staff. As a new Ambassador of the Foundation it was a wonderful opportunity to get to know the charming and friendly Matt. We look forward to working with him more into the future. Thank you Matt for your ongoing support. Note: If you are a corporate that would like to get involved in raising funds for the Foundation then please contact Charlotte Hutchins via email on charlotte@lifeslittletreasures.org.au or call 0435 070 626

Tour to Portsea Thank you to Troy Lovett for introducing LLTF to the Tour to Portsea. Due to his introduction LLTF has been selected as this year’s Tour to Portsea charity of choice. The members of the Tour to Portsea raise funds for a different charity each year and this year LLTF will be the lucky recipients of fund raised. We thank the Tour to Portsea members and wish them luck with their ride this year.

Ride 4 Zane and Bailey

roy Lovett, father of premature twins, embarked on a tough bike ride from Sunbury to Anglesea on October 5. The 130km ride was nothing compared to the heartache of losing his son Zane. Troy and his wife Bec's twins Zane and Bailey were born at 24 weeks in 2011. Devastatingly, Zane lost his fight to live two weeks later. As a chance to do something to honour Zane and his courageous sister Bailey, Troy rode with his brother and four mates whilst collecting money for Life's Little Treasures Foundation and they raised over $11,000 via everyday hero. If you would like to make a donation to Troy’s efforts: www.give.everydayhero. com/au/4zaneandbailey We applaud Troy’s fundraising efforts and thank him for giving back to families who are currently experiencing a similar journey to his families two year ago.

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

lifeslittletreasures.org.au

THANKS! Year in and year out it never ceases to amaze us how wonderful our supporters are and what they are willing to do to raise the vital funds we need to continue our services throughout Australia. This year is no exception so far, with sporting events held in every state, we have had people running & raising funds in events such as: • The 2013 Sun-Herald City2Surf • The Age Run Melbourne 2013 • The Sunday Mail Suncorp Bank Bridge to Brisbane 2013 • To the Moon and Back 2013 • 2013 Gold Coast Airport Marathon • Melbourne Marathon • Tough Mudder

The Irvine Club raises $40,950 for families in need

ife’s Little Treasures Foundation runs on the generosity of people supporting our work via donations. During May 2013 we had the wonderful opportunity to generate funds via a private business luncheon hosted by the Irvine Club. The Irvine Club is a notfor-profit organisation themselves and primary objective is to create an event for members to discuss sport. During these events the attendees raise funds for a selected cause. Life's Little Treasures was lucky to be selected as the recipient for the May Luncheon. It was a wonder full day with Alex Aldis, dad to premature twins, presenting his family's premature journey and opening the hearts and wallets of those in attendance. The luncheon impressively raised $40,950 to enable Life’s Little Treasures Foundation to continue our support of families needing assistance. We truly thank the Irvine Club for their support this year.

★ One very special man James Boocock took it a step further and did the Atacama Crossing, doing Six, yes SIX marathons in six days at 3000m, beginning in San Pedro, Chile. This race is run over 250km (155 miles) in the Atacama Desert, 3000m above sea level. Competitors have to carry all of their supplies for the six day event, which amounts to a pack weighing approx 10kg. The Atacama Desert is recognised as the driest place on earth, with some parts never having recorded rainfall and we are very pleased to say he did it!! Hoping we haven’t left anyone out, here are the wonderful supporters who have helped us out this year, we can’t thank them enough and with their funds raised we’ll be able to assist more families than before. ★ So a very BIG THANK YOU goes to: James Boocock, Troy Lovett, Grant Robson, Peter Gibbs, Daniel Hurley, Shannon Hinds, Dean Gladstone, Chip Plunkett, Beau Lovett, Katie Dennis, Shelley Robinson, Kristen Miller, Maria Flanagan, Chloe Gibson, Michelle Lafranchi, Sharon Craig, Mariah Deacon, Gregory Prescott, Michelle King, Renee Hall, Verity Lowe, Rachael Sheppard. Note: If you would like to get involved and fundraise in any way for the Foundation then either go to: www.lifeslittletreasures.org.au/get-involved/fundraising or call us on 1300 697 736

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

lifeslittletreasures.org.au

Books and Bubs

Books and Bubs Reading Program The Books and Bubs Reading Program has been developed to provide families with an opportunity to bond while in NICU.

In August we launched a new hospital program called Books and Bubs Program. It has been developed to provide families of premature and sick babies with an opportunity to bond with their babies while in NICU.

“It helped to be able to read to her. When we didn’t know anything we could do for her, it was nice to do a normal thing.”*

“Reading to my baby was a minute of intimacy I really needed.”*

Studies have shown that reading to your baby can promote: • Sense of Control • Sense of Intimacy

Reading to your baby can promote a

• Sense of Normalcy So thanks to the very kind generosity of mums around Australia who have donated baby books to us, we have been able to send these books into the hospitals for the families.

• Sense of Control • Sense of Intimacy • Sense of Normalcy For further information about this program please ask your health professional.

Books Located at:

If you are interested in hearing more about the program then please contact our Hospital Liaison Coordinator Karen Peters via email at: karenp@lifeslittletreasures.org.au

1300 MYPREMMIE / 1300 697 736 www.lifeslittletreasures.org.au facebook.com/lifeslittletreasuresfoundation twitter.com/@LifesLittle *Reference: J. Lariviere, J.E. Rennick, Parent Picture-Book Reading to Infants in Neonatal Care Unit as an Intervention Supporting Parent-Infant Interaction and Later Book Reading. Journal of Developmental and Behavioural Paediatrics Vol 32, No1, January, 2011. p 3-4

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The LLTF Parent Support Network Parents Supporting Parents The Parent Support Network matches parents of premature & sick babies together who have been through a similar journey to provide support while baby is in hospital through to transitioning to home. Parents can share stories, connect to community support services and provide a unique understanding that only parents of premature and sick babies share. If you are interested in volunteering for the Parent Support Network or would like to know more, please contact our volunteer coordinator Caroline Whiteside at volunteer@lifeslittletreasures.org.au

had “I finally felt that I to me, someone listening who truly understood, , who didn’t judge advice comment or offer my they just listened to fears for over an hour”

Below are a few of the many families that make up our Parent Support Network Mother: Shusannah Baby: Molly-Rose - 25 weeks Details: IVF with complications, hospitalised for term of pregnancy, severe haemorrhaging. Chronic lung, respiratory & feeding issues, home on oxygen for 2 months. Stage 4 ROP & complications. Eye surgery at 2 years to correct lazy left eye. Wore glasses until 9yrs of age. Toilet training issues until 5 years of age. Is an Asthmatic. Some attention/ concentration problems. Has mild Aspergers. Mother: Renae Baby: Coby & Lachlan (Now an angel) – 29 week twins Details: 1121g & 1551g – Twin to twin transfusion, sudden unexpected loss of bigger stronger twin after 3 months, un diagnosable metabolic bone disorder, pulmonary hypertension, chronic lung, more than 8 months in hospital (7 months in NICU). Home on drugs, oxygen & with feeding tube. Long term expressing, long term home oxygen, long term NGT and ongoing feeding issues.

rents Parents helping Pa

nts ork matches pare Parent Support Netw babies together who of premature & sick ey journ ar a simil have been through

Mother: Elizabeth Baby: Boy - 35 weeks Details: Mum: emergency c-section due to severe pre-eclampsia; milk never came in. Baby boy: in SCN for 5 weeks, IUGR (1.4kg), 2 x VSDs (holes in heart) with heart murmur, all self-healed by 18 months. Very severe hypospadias, requiring 3 major operations plus an orchidopexy. Duane’s Syndrome (rare eye movement condition). Ear tag, requiring removal. Delay in walking, requiring some occupational therapy. Asthma and eczema.

work Parent Support Net 1300 697 736

Mother: Nancy Baby: Thomas, Joshua, Luke – 27 weeks (Identical Triplet Boys) Details: Thomas 910gms, Joshua 780gms & Luke 920gms. Born early due to one placenta, TTS – Twin to Twin Transfusion Syndrome. Two babies were intubated and one on CPAP for up to 6 days. 11 Days in NICU followed by 12 weeks in Special Care. No major long term problems or complications. Mother: Karin Baby: Robbie – 32 weeks Details: emergency c-section weighing 1334g due to severe pre-eclampsia and HELLP syndrome suffered IUGR and sepsis infection. Gross motor issues requiring physiotherapy. Second baby born at 36 weeks due to pre-eclampsia again.

“It took a while before I could pick up the phone but after 10 minutes of chatting to the most wonderful women, I finally I felt that I had someone to listen to me, that truly understood what I was going though.”

asures.org.au

Parent: Meaghan & Alex Baby: Twins: Milly-Rose and Lachlan - 24 weeks Details: Weighed 545grams and 622grams. Pre term labour at 22 weeks, over 189 days in hospital, chronic lung, PDA ligation, bowel perforation & stoma, pneumonia, oesophageal perforation, respiratory failure on numerous occasions, ongoing dexamethosone steroid treatment, home oxygen, twins separated and across two different intensive care units for 4 months, pneumothorax, incubated for 8 & 9 weeks, long term CPAP, numerous infections, gross development delay, vocal palsy due to severed laringiual nerve, lung collapse, ongoing early intervention for speech, occupational therapy etc, picu admission post nicu discharge.

Kylie, Mum to a beautiful little girl, Born 31 weeks

Foundation 2013

27/09/13 10:49 AM LLTF_parent support

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1300 MYPREMMIE / 1300 697 736 www.lifeslittletreasures.org.au facebook.com/ lifeslittletreasuresfoundation twitter.com/@LifesLittle

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Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

27/09/13 10:49 AM

lifeslittletreasures.org.au

Diary Dates Parent support groups and Morning Teas Life’s Little Treasures Foundation organises Parent Support groups at various venues throughout Victoria, details below. This is a great opportunity for parents with premature babies to have a cuppa and chat and meet other parents in a similar situation. All venues are free of charge. Come along and see what else we can offer. Looking forward to seeing you there. Call us on: 1300 MYPREMMIE (1300 697 736). VICTORIA

Hoppers Crossing

Circular Head Group

Chadstone/Malvern

Dates: Last Friday of the Month Time: 10.00am – 11.30am Venue: Yerambooee Community Centre, 55 Maple Crescent, Hoppers Crossing, VIC, 3029 (Directions: Morris Road, Bellbridge Crescent, Maple Crescent). Coordinator: Jacki (0448 839 717) Cost: Free Centre Ph: (03) 9748 9310 Centre website: www.yerambooee.org.au

Dates: 2nd Monday of every month Time: 10.30am Venue ANZAC Park Playrooms Address: 33A Kings Street, Smithton, Tas 7330 Coordinator: Shelley Cost: Free

Dates: 2nd Friday of the month (commencing May 10th 2013), except school holidays Time: 10am – 11.30am Venue: Phoenix Park Neighbourhood House, 22 Rob Roy Road, East Malvern VIC 3145 Coordinator: Rowena Cost: Free Centre Ph: (03) 9530 4397 Centre website: www.phoenixparknh.org.au

Sunbury Dates: First Friday of the Month Time: 2.30pm – 4pm Venue: Sunningdale Maternal Child Health Centre, 30 Sunningdale Avenue, Sunbury Coordinator: Maternal & Child Health Nurse, Karen Freeman Tel: (03) 97447594 (centre number for any enquiries) Cost: Free

Traralgon Dates: Monday 9th Oct, Monday 28th Nov, Monday 2nd Dec 2013 Time: 9am – 11am Venue: Traralgon East Community Centre, Cameron Street, Traralgon Coordinator: Rachel (0439 485 882) Cost: Free

Spotlight on our new Hospital Liaison Office: Karen Peters We are pleased to introduce one of our very lovely new employees Karen Peters, our Hospital Liaison Coordinator and this is her story.

TASMANIA

North West Coast Group Dates: 1st Monday of every month Time: 11am Venue: Child and Family Centre, (old acton primary school) Thorne street, Burnie Coordinator: Andrea Cost: Free

Launceston Group Dates: 3rd Wednesday of every month Time: 10am Venue: Child and Family Centre, Ravenswood, Prossers Forest Road, Ravenswood Coordinator: Jenna Cost: Free

In 2008 after a difficult pregnancy my son Joshua was born at 35 weeks. During his time in hospital I met many families going through the same journey and realised how all parents in the unit look to each other for support. Once Josh was home I knew I wanted to do something to help families going through the experience of having a premature/sick baby and I began volunteering with Life’s Little Treasures where I met the most amazing and inspiring team of people. I have since volunteered at the Walk for Prems, grant writing and became a member of the management committee. This year I was fortunate to be able to work in role as Hospital Liaison Coordinator. I connect health professionals in NICU and

HOSPITALS Royal Women’s Hospital, Melbourne This provides a great opportunity for parents with babies currently in NICU/SCU to meet parents who have been through this experience before. These morning teas are only available to parents who currently have babies in NICU/SCN at the hospital

Morning Group Dates: First Tuesday of every month (except school holidays/Public Holidays) Time: 10am – 11am Venue: 4th floor (NICU), Parents Retreat Room, Royal Women’s Hospital, Melbourne

Evening Group Dates: Last Wednesday of every month (except school holidays/Public Holidays) Time: 6 – 7pm Venue: 4th floor (NICU), Parents Retreat Room, Royal Women’s Hospital, Melbourne

SCN nationally to LLTF, educating them on services that are available to parents while in hospital and when they transition to home. We now have over 60 hospitals working with LLTF promoting our services and connecting families across Australia to the LLTF community. I look forward to bringing many more hospitals on board and building the necessary relationships with the hospitals so we can ensure all families once having a prem or sick baby are supported from the very beginning. If you are a hospital that would like to start receiving our services for your families then please contact our Hospital Liaison Coordinator Karen Peters on 0466 406 751 or via email on karenp@lifeslittletreasures.org.au

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

lifeslittletreasures.org.au

Donate In the past year over 45,000 babies were admitted into neonatal intensive care & special care units throughout Australia. That’s over 115 admissions every day and over 1,300 of these babies weighed less than 1000 grams which is lighter than a bag of sugar!

Premature birth is the number one killer of newborns The Life’s Little Treasures Foundation is Australia’s leading charity whose aim is to improve the lives of premature and sick babies by providing information and assistance to their families, and by supporting research. We currently receive no government funding. We rely completely on the kind generosity and donations of individuals and organisations.

Volunteering at the Foundation It is through the dedication of this volunteer network that LLTF is able to consistently remain able to provide these services to families in hospital (neonatal and special care units) and in the community when families come home.

From the donations we receive, we are able to help hundreds of babies and families through the: • Provision of two world first iApps designed to assist families record information and track baby’s progress through hospital and beyond • Free distribution of our hospital survival packs for parents • Development and distribution of our parent guide and community directory designed specifically for families with babies born premature or sick • Running free support groups in the community and at hospitals • Upkeep of the 24/7 support line: 1300 MYPREMMIE (1300 69 77 36) • Development of a website that has become the premier online resource centre for both families and professionals on all things relating to babies born premature or sick.

WE NEED YOUR HELP! Please donate now and help us help seriously sick and premature babies and families and choose the Life’s Little Treasures Foundation for your charity donation. There are a number of ways in which you can donate to the foundation which will assist us greatly. Donate online at:

www.lifeslittletreasures.org.au/donate/donate-online

The Foundation is very grateful to have to have such a dedicated and amazing team of people who all come from many different walks of life but who all share a common goal and wish to give back to the community. There are many ways in which our Volunteers can assist LLTF such as: • Being part of the main LLTF working committee • Assisting with Marketing /PR/Design • LLTF Newsletter Production • Parent Support Network • Fundraising events • Social Events • Support Groups

Or to find out what other ways you can donate go to:

• Busy Bee Days

All donations over $2 are tax deductible. ABN: 94 232 874 269

• Walk for Prems charity fun run/walk

www.lifeslittletreasures.org.au/donate

Thank you for your generosity in supporting our foundation.

If you would like to find out more about volunteering, please call us on: 1300 MYPREMMIE or email us at: volunteer@ lifeslittletreasures. org.au

Have you changed your address or contact details?

If you are interested in assisting LLTF in any capacity then we would love to hear from you, not all volunteers are required to sit on the committee but certain roles do require a Working with Children Check.

To update them please email: contact_us@lifeslittletreasures.org.au

Download the volunteer registration form our website at: www.lifeslittletreasures.org.au/ get-involved/volunteering

Life’s Little Treasures Foundation Supporting Families of Premature & Sick Babies

lifeslittletreasures.org.au