President‟s welcome I cannot believe that we are already half way through 2011. Welcome to our second newsletter of the year which is going to be a bumper issue as we have been very busy bees this year. Where do I start? Well we are expanding and on the move!! First stop, Tasmania. The Life‟s Little Treasures Foundation (LLTF) is officially launching into Tasmania this year. Thank you to our team in Tasmania and the fantastic support from the Royal Hobart Hospital and Launceston Hospital in letting us provide our services to the families there. To learn more about the Tassie team and the Masquerade Ball planned for Tasmania on the 22nd October 2011 turn to page 11.
What‟s inside? President‟s welcome Contact, Vision and New Members Ambassadors Breast Bump Presentations Information Night Theme: Preterm Birth Parent‟s story: Shoshanna‟s Story PROGRESS Trial Welcome Tasmania Tax Help LLTF Counselling Services Thanks Volunteering Events Congratulations Premmie and Beyond Sessions Diary Dates Cooks Corner & Our sponsors Register your Little Treasure
In the month of May LLTF also held a highly successful information evening for people wanting to know more about the Foundation, its work and how people can volunteer. Turn to page 4. This year we were also nominated for the Victorian Health Minister's volunteer awards. We were very proud to have been one of the organisations that was selected as a finalist. This was our first year of nomination and competition was tough. It was a great morning and we got the opportunity to meet Nicole Livingstone, the Health Minister and some amazing volunteers, many of whom have dedicated years of their life to helping others. Earlier this year, I was also very privileged to have been approached by Inspirational Women TV to be interviewed for their exciting new info-tainment programme featuring interview segments with successful women in business, the arts and the community, as well as handy tips in fashion, finance and lifestyle. In Episode 10 which will air Sunday 7th August 9.30pm Channel 31 TV Melbourne and Wednesday 21th September 7pm AURORA 183 on FOXTEL DIGITAL, AUSTAR DIGITAL, OPTUS TV, you will have the opportunity of seeing me tell Katrina Jojkity all about Life‟s Little Treasures Foundation and how we help families of premature and sick babies. To find out more about Inspirational Women TV, please visit http://www.inspirationalwomen.tv . And now for the question everyone has asked - Yes, “Walk for Prems” is confirmed and back‟s for its second year. So put Sunday 6th November in your diary, tell all your family and friends and put your walking/running shoes on and start training. This year the event is going to be even bigger and better as we are going national! For more information on our walk, turn to page 15 Thank you to everyone for your support and generosity which continues to keep us going. Best Wishes Parool
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.
Newsletter July 2011
© 2011 LLT
LLT ©2008
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Contact details Life‟s Little Treasures Foundation PO Box 476 ABN 94 232 874 269 Chadstone Centre RP, Victoria ACN 143 037 834 Phone:1300 MYPREMMIE (1300 697 736) www.lifeslittletreasures.org.au contact_us@lifeslittletreasures.org.au Founding member of the National Premmie Foundation Join us on Facebook :https://www.facebook.com/pages/Lifes-Little-Treasureswwwlifeslittletreasuresorgau/61924478275 Follow us on Twitter : http://twitter.com/#!/LifesLittle
Our mission & what we do Who are we? The Life‟s Little Treasures Foundation is an National Australian charity which is dedicated to providing information, support, friendship and assistance to families of children born prematurely or sick . Our services are available in the hospital (neonatal and special care units) and in the community when families come home. It is run those whom themselves have had a premature or sick baby and understand the challenges that these babies and families face. Our Mission To improve the lives of premature and sick babies by providing information and assistance to families and supporting research. Services Introduce programs, which provide practical and emotional support to families who have babies that have spent time in intensive/special care nurseries. Provide easily accessible and relevant information for families. Offer continued assistance to families to ease the transition from hospital to the home environment Increase community awareness of the unique issues faced by families of these special babies. Educate & provide assistance to healthcare providers who support families of premature or sick babies Support & participate in research. Providing funding for vital hospital equipment & information resources
Welcome to new Members Leanne Minehan
Tamara Clark
Jenny Lawrence
Gaby Hollins
Joanne McPhee
Angela Hurd
Georgi Coghlan
Gwen Green
Charlotte Nuske
Nicole Trickey
Sapna Vats
Emma Attrill
Stacey Kendal
Bradley & Suanna Sprigg Amanda Stephenson
Contacts, Mission & New Members LLT ©2008
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Ambassadors Along with our current ambassador Tracy Spicer. We are very proud to introduce our latest ambassadors who have come on board to help us raise greater awareness in the community. A huge welcome to: Clare Bowditch, Australian singer and songwriter, best female artist award at 2006 ARIA's, Rolling Stones Woman of the Year 2010 and recently supported Leonard Cohen in his Australian tour. Gorgi Coglan, co-host on Channel Ten‟s Aria award winning morning program – The Circle. With a background in news, current affairs, travel, entertainment, science, education and professional singing, Gorgi Coghlan is one of the most well-rounded television presenters in Australian media.
Mel and James, Tasmanian contestants from My Kitchen Rules. Mel‟s family has been personally touched by the experience of having a premature baby and are delighted to be our ambassadors.
We are also delighted to have two very prominent professionals in the health industry come on board as our health ambassadors. Their support is vital to us in ensuring that the advice we provide to families is accurate, up to date and evidence based. A big welcome to: DR Peter Anderson, Director, Victorian Infant Brain Study (VIBes), Murdoch Children’s Research Institute, Royal Children’s Hospital. He is a CR Roper Fellow in the School of Behavioural Science at The University of Melbourne and Senior Research Fellow at the Murdoch Children‟s Research Institute. In addition, he is co-director of the Australian Centre for Child Neuropsychological Studies (ACCNS), which is the leading centre for paediatric neuropsychological research in Australia. Dr Gehan Roberts, Developmental-Behavioural Paediatrician, Royal Children's Hospital and a NHMRC post-doctoral fellow at the Murdoch Children‟s Research Institute. Gehan coordinates the Victorian training program in Community Child Health and his research interests include the long term outcomes of preterm birth, intervention trials for children at risk of learning and developmental difficulties and health services research in the secondary care sector. To find out more about our wonderful ambassadors and why they support Life's Little Treasures Foundation, visit our webpage http://www.lifeslittletreasures.org.au/about-llt/llt-ambassadors/ We are very excited to have you all on board
Ambassadors LLT ©2008
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Breast Pump Presentation On Tuesday 14th June, the Foundation was delighted to be able to donate a state of the art Medela Breast Pump worth $4,000 to the Monash Newborn Unit. The pump will be used in bays 7 & 8, which will help mums of very sick babies to express vital breast milk without having to leave them. The presentation was held in conjunction with a morning tea and was attended by Prue Oshlack & Dr Andrew Ramsden, Director of Newborn Services. We are delighted to have been able to make such a donation and provide a much needed resource for families.
Information Night In May this year we held our information night at the very hip and trendy Fashion Lounge. All those attending got an opportunity to find out more about the Life‟s Little Treasures Foundation and the work that we do whilst enjoying drinks (courtesy of Moet and Chandon and Carlton United Breweries) and nibbles and the great venue provided by Fashion Lounge thank you. Thank you to our ambassadors who came and supported us on the night, the wonderful Clare Bowditch and DR Peter Anderson for his wonderful speech. The Life‟s Little Treasures Foundation would also like to say thank you to Renae Meiska who was very brave a shared her story. Renae‟s story was simply inspiring and touched everyone‟s heart – there was not a dry eye in the house. The night was resounding success with much need funds raised and many Volunteers joining the team.
Fuel Vouchers In May we were delighted to be able to present, along with our online forum partner L‟il Aussie Prems www.lilaussieprems.com.au, 6 families currently in hospital, with a fuel voucher, to help ease the financial strain of travel expenses. We hope it helped a little.
International Nurses Day To celebrate International Nurse Day, we asked “What Nurse made a deference in your life?”, we had a huge response & were delighted to be able to present 3 nurses from around Australia with a very lovely “Thank You” gift on behalf of the family that nominated them.
Breast Pump and Information Night…. LLT ©2008
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Preterm Birth WHY DO WOMEN DELIVER EARLY? In nearly half of premature births, the cause is unknown. However, researchers have made some progress in learning the causes of prematurity. Studies suggest that there may be four main routes leading to premature labor. 1.
2.
3.
4.
Maternal or fetal stress. Chronic psychosocial stress in the mother or physical stress (such as insufficient blood flow from the placenta) in the fetus appears to result in production of a stress-related hormone called corticotrophin-releasing hormone (CRH). CRH may stimulate production of a cascade of other hormones that trigger uterine contractions and premature delivery. Infections. Studies suggest that premature labor is often triggered by the bodyâ€&#x;s natural immune response to certain bacterial infections, such as those involving the genital and urinary tracts and fetal membranes. Even infections far away from the reproductive organs, such as periodontal disease, may contribute to premature delivery. Bleeding. The uterus may bleed, due to problems such as placental abruption (when the placenta peels away, partially or almost completely, from the uterine wall prior to delivery). Bleeding triggers the release of various proteins involved in blood clotting, which also appear to stimulate uterine contractions. Stretching. The uterus may become overstretched by the presence of two or more babies, excessive amounts of amniotic fluid, or uterine or placental abnormalities, leading to release of chemicals that stimulate uterine contractions.
The finding that there are several routes that can result in premature delivery may help explain why prematurity is so difficult to prevent. Now that scientists have a better handle on possible pathways to prematurity, they may be able to develop more effective interventions that can halt the various chemical cascades that lead to it. But first they must identify the women who need these treatments.
Preterm Birth LLT Š2008
6 RISK FACTORS Approximately 40,000 babies are admitted to Neonatal Intensive Care Units (NICU‟s) or Special Care Nurseries (SCN‟s) each year for a variety of reasons. Approximately 21,000 of these babies are born prematurely. Around 6,000 babies require critical and intensive life support each year (Laws, Grayson & Sullivan 2006). What is premature birth? A normal pregnancy lasts for approximately 40 weeks. Premature or preterm birth is defined medically as a baby being born earlier than 37 weeks of pregnancy. Risk Factors for Premature Birth Many causes of pre-term birth are unexplained and unknown, however there are many risk factors that increase the chances of babies being born early. There are many different factors, medical and otherwise that may make some women more high risk: Multiples With an increasing number of women using Invitro Fertilisation (IVF) to become pregnant, and an increase in maternal age, physicians are delivering more sets of twins and triplets or higher order multiples. Approximately half of all twin pregnancies end in pre-term delivery and almost all higher order multiples are born prematurely. Multiple pregnancy can also result in TTTS (Twin to Twin Transfusion Syndrome). Previous premature birth Women who have had a premature delivery previously have an increased risk of having another pre-term delivery. Short period between pregnancies A period of less than six to nine months between the birth of one baby and the start of the next pregnancy increases the risk of premature delivery. Pre-eclampsia Preeclampsia is the development of elevated blood pressure and protein in the urine after the 20th week of pregnancy. It may be associated with swelling of the face and hands. Symptoms can include oedema (swelling of face and hands), high blood pressure, vision disturbances, headaches, nausea and vomiting. This condition can lead to serious complications for the mother and fetus including premature birth. The only known cure is delivery of the baby. HELLP Syndrome Hemolysis, Elevated Liver enzymes, Low Platelet count This is a serious complication related to high blood-pressure during pregnancy. Red blood cells start to break down causing animea, liver cells are damaged and this effects liver function, low platelet count which affects the ability of blood to clot. Symptoms may include a general unwell feeling and/ or feeling weak, increased blood pressure, protein in urine, abdominal pain, swelling, headaches, nausea and vomiting.
Preterm Birth cont'd LLT ©2008
7 Smoking There are many well-known risks associated with smoking during pregnancy, including low birth weight babies and premature deliveries. Uterine or cervical abnormalities This includes stretching or abnormally shaped uterus or cervix, as well as fibroids or even having too much or too little amniotic fluid. Women with an incompetent cervix may require a procedure known as a cerclage. Performed at about 12 weeks gestation, this procedure involves placing a stitch in the cervix to prevent it from opening up too soon. The stitch is then removed when the baby is closer to full term. Recurring infections Infections affecting the vagina, kidneys, bladder and urinary tract can all lead to pre-term birth. Also, any infection with a high fever of more than 38 degrees Celsius during pregnancy can lead to an early birth. Chronic illnesses High blood pressure, diabetes, inflammatory bowel disease (IBS), kidney disease or lupus. Abortion History of second-trimester abortion or more than two first-trimester abortions. The cervix may be damaged during these procedures. Mother’s age Younger than 18 or older than 40 years. Clotting disorder (thrombophilia) Alcohol and drug abuse Heredity May play a role in the risk of premature birth. PPROM – Preterm Premature Rupture of Membranes This is where the amniotic sac ruptures/breaks before the onset of labour. Many causes of PPROM are infections but some of the causes remain unknown or unclear. Placental risks & causes – Placenta Previa and Placental Abruption Placenta Previa is where the placenta is obstructing the cervix. The placenta may be completely covering the cervix, partially covering the cervix or sitting close to the edge of the cervix. Placenta Previa can cause bleeding, and an increased risk of slow fetal growth, preterm birth and birth defects. There is no treatment for Placenta Previa, however steps can be taken to reduce the health risks to mother a baby. This can include bed rest, steroid injections to strengthen babies lungs in readiness for pre-term birth, and caesarean delivery. Placental Abruption is defined as the premature separation of the placenta from the uterus. This can cause minor bleeding or serious haemorrhage, depending on the degree and location of the separation. Direct trauma to the uterus is one known cause and other risk factors may be smoking, high blood pressure and multiple pregnancy. Symptoms can include vaginal bleeding, feeling faint, nausea and abdominal pain.
Preterm Birth cont‟d LLT ©2008
8 SIGNS OF PRE TERM LABOR All women should be aware of the signs of pre-term labour. Even if you are not recognised as having a high risk pregnancy, you are still at risk, as many of the causes of pre-term birth are still unknown. If you experience any of the following symptoms, or feel that something is “not right”, seek medical advice. Contractions Contractions that are painful or regular may be a sign of pre-term labour. Ruptured Membranes This could mean a gush of fluid or may just be a trickle of watery fluid. This could indicate that your water has broken. Cramps Menstrual-like cramps could indicate labour. Back Pain Pain in the lower back Pressure A feeling of the baby pushing down, pelvic pressure. Vaginal Discharge Leaking fluid, blood or a “show” of mucus from the vagina may indicate pre-term labour.
TREATMENT If preterm labour is determined, there are a number of treatments that can be used to stop or delay the labour. These include bed rest, hydration and administration of Turbutaline or Magnesium Sulphate. If it appears that birth is eminent and the baby is between 24 and 34 weeks gestation, a corticosteroid may be given to the mother 24 hours before birth in an attempt to increase the baby‟s lung and brain development. Although bed rest, fluids and labour-inhibiting medications including steroids may be prescribed, these attempts often merely offer a short delay in the delivery to allow physicians to speed the development of the baby‟s lungs and, if necessary, transfer the mother to a hospital that is better equipped for premature babies, such as one with a neonatal intensive care unit (NICU). Sources: March of Dimes, National Premmie Foundation, Life‟s Little Treasures Foundation.
Some Resources: Pregnancy week by week: www.mayoclinic.com/health/preterm-labor/PR00118 Mamas On Bed Rest: www.mamasonbedrest.com Keep Em Cookin: www.keepemcookin.com
Spotlight Pretermon Birth mental cont‟d health LLT ©2008
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Shoshannaâ€&#x;s Story One mums experience on the Progesterone Study For me being pregnant means being overwhelmed and feeling sick. With my first baby I was just getting my head around the concept of being pregnant and then all of a sudden I wasn't anymore. It was very confusing having a baby born at 22 weeks and then hours later not having a child at all. She passed away shortly after being born. She was simply too small and too early. Her name was Amberlay. Many years later I was pregnant again. I told the GP my history and was referred to the clinic for high risk pregnancies at Monash. I don't remember exactly how I became involved in the progesterone study, if they approached me first or if I asked about the study after seeing the flyers on the wall while in the clinic. For me, participating in the trial wasn't an easy decision to make. I was already worried about everything to do with my pregnancy without then having to worry about being involved in a trial that may or may not work, may or may not have side effects and I may or may not be given a placebo product. Just to top it off the progesterone was in pessary form. I didn't even know what a pessary was before this trial and once I found out what it was, I felt a sense of dread. From memory the study must start within the 18th and 23rd weeks of pregnancy. I was still deciding if I would participate and then before I knew it, it was too late, my waters broke (PROM). I spent about 10 days in the hospital praying to not give birth until at least 24 weeks, not moving much and trying to keep myself together mentally. My second baby was born at 24.5 weeks and weighed 553grams. She spent close to 6 months in hospital and came home tube fed. She is now 3.5 years old and has been eating for one year. When I was pregnant for the third time, I didn't hesitate and asked to join the trial. My husband and I thought that if there was anything in the entire universe that had even the slightest chance of keeping the baby in for any amount of time, it was probably worth a try. Each night I hesitantly inserted the pessary wondering if I was doing damage to my cervix or any other part of my body (or the body of my unborn child), and at the same time hoping the progesterone would make him stay in longer. Adding to my anguish, I was also enduring very frequent (weekly to fortnightly) internal ultrasounds, this was not a part of the trial, this was just an added 'bonus' of being the mother to so many premature babies. Yet, once I passed the gestation of both my previous babies the pessaries became much easier to insert. I was still confused, but very hopeful. Each day that I kept this baby in was a miracle. Our son was born at 29 weeks, had a quick 2 months in hospital before coming home and is now 2.5 years old with no complications due to prematurity. I feel blessed that my third child stayed in for 5 weeks longer than my second and 7 weeks longer than my first. I feel very grateful to have two beautiful children at home with my husband and I, whether or not the third stayed in longer due to Progesterone, at this stage we can only make assumptions.
Parentâ€&#x;s SpotlightStory on mental health LLT Š2008
10 I found everything about being pregnant difficult. I also discovered many of my limits emotionally and physically. While on the trial and after I passed my pregnancy gestational record (24 weeks at the time) progesterone became a great support even if it was emotionally difficult to use. In addition it is a good feeling to be a part of something that potentially can help so many families in the future. I don't think I suffered any side effects and my son seems completely fine too. The study is ongoing and currently recruiting. As far as I am aware it is offered to women who have had a previous premature baby, which is why many families of first time premies may not know about it. In addition there are other eligibility criteria you must fulfil before being able to participate. There is an exclusion criteria for the trial. Other than participating in the trial, I am in no way affiliated with them. Anyone wanting information about feeding tubes and weaning off them please see www.tubefedkids.com Mum ~ Shoshanna Sibony
PROGRESS Trial PROGESTERONE AFTER PREVIOUS PRETERM BIRTH FOR THE PREVENTION OF NEONATAL RESPIRATORY DISTRESS SYNDROME „Neonatal respiratory disease, due to immature lung development, is a significant consequence of preterm birth and is the major cause of early neonatal mortality and morbidity. The incidence of preterm birth (birth less than 37 weeks gestation) is approximately 7.0%, with 2.6% of all births occurring before 34 weeks gestation. The exact mechanism of the onset of labour in humans is complex. Progesterone is known to be essential for maintaining pregnancy, having an important role in uterine relaxation. Although recent reports of progesterone therapy for women at risk of preterm birth show promise, there is currently Insufficient data to routinely recommend the use of progesterone to prevent preterm birth. The PROGRESS trial involves women who have a history of spontaneous preterm birth at less than 37 weeks in the preceding pregnancy and will compare the effectiveness of vaginal progesterone pessaries with placebo pessaries in preventing preterm birth. We welcome any enquiries from women who may be interested in taking part in PROGRESS or would just like more information.‟ PROGRESS Maternal Perinatal Clinical Trials Unit Dept. of Obstetrics & Gynaecology University of Adelaide Women‟s & Children‟s Hospital Reply Paid 60836 NORTH ADELAIDE South Australia 5006 Phone: (08) 8161 7767 Fax: (08) 8161 7652 www.adelaide.edu.au/arch/research/clinical_trials/progress.html PROGRESS Coordinator Pat Ashwood COORDINATING COMMITTEE:- ADELAIDE Prof Caroline Crowther , Dr Jodie Dodd, Dr Andrew McPhee, Ms Vicki Flenady, Prof Jeffrey Robinson
Parent‟s Story cont‟d and PROGRESS Trial LLT ©2008
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Welcome to Tasmania The Lifeâ€&#x;s Little Treasures Foundation is proud to announce that it has officially opened a Tasmanian Branch and has begun working with all Tasmanian Hospitals providing NICU and SCN services. Leading the team on the apple isle are Katie Elphinstone and Amanda Stephenson along with an army of volunteers. Hospital packs will be distributed to all the hospitals providing NICU and SCN care in Tasmania and the team have been busy spreading the word about resources and services the foundation provides.
Katie Elphinstone with Byron born at 27 weeks
Amanda Stephenson with Chloe and Noah born 30 weeks
If you would like to volunteer to be part of the Tasmanian team please email us at volunteer@lifeslittletreasures.org.au
Welcome Tasmania LLT Š2008
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Tax Help End of Financial Year What does that mean for you? Having a premature or sick baby can put a big financial strain on any family, with end of year just around the corner, are you aware of what you may be eligible to claim for?.
Medical Expenses You can claim a tax offset of 20% of your net medical over $1,500. There is no upper limit on the amount you can claim. You can claim for medical expenses relating to an illness or operation paid to legally qualified doctor, nurse or chemist and public or private hospitals. Other areas you may be able to claim for are hearing/medical aids. To get more information on what you may be eligible for go to the Australian taxation dept website at www.ato.gov.au Or call their customer service line on 13 28 65 and ask for a Tax Pack & a Tax Pack Supplement for 2010 (p55 of supplement will take you through all the details). Child Care Rebate and Child Care Benefit To help with child care costs, the Australian Government offers two types of financial assistance: the Child Care Rebate and the Child Care Benefit. Further information on these rebates can be found on the mychild website at www.mychild.gov.au/childcarerebate or call Centrelink Family Assistance office 13 61 50 Education Tax Refund The Australian Government is helping you with the costs of educating your kids. The Education Tax Refund provides up to 50% back on a range of children‟s education expenses. For the 2010–11 tax year refunds may be as much as $397 for every child at primary school, and up to $794 for every child at secondary school. The amount of the refund increases each year by the Consumer Price Index. For further information go to www.educationtaxrefund.gov.au “My Child” Government Website The mychild website is Australia's online child care portal. On this website you will find information on different types of child care and how to get assistance with the cost of child care. You can also search a database to find child care centers in your local area. In many cases, you will also be able to find the services' vacancy and fee information. This site also has information and links to other useful websites about children's health and wellbeing, parenting and family support services. For more information go to www.mychild.gov.au.
Spotlight Tax Help on mental health LLT ©2008
13 How you can obtain Counselling Services through the Foundation with NO out of pocket expenses? Having a premature and sick baby is a daunting and often frightening experience that feels as if it will go on forever. The continuing high level of worry, uncertainty and fear often causes significant distress for all who are close and takes its toll, particularly on parents. The Foundation is committed to assisting families and providing them with services that will help them through this rollercoaster ride. As part of this commitment we have partnered with Melbourne based Psychologist & Psychotherapist David Hoffman. David understands the journey these families find themselves on and is willing to offer his services to any registered LLTF families who may feel they are not coping with daily life as well as they want to. To avail of this service you will need to Register for an LLTF “Little Treasure” pack. As part of the pack you will receive a validated Introduction Voucher. Obtain a GP referral under the Medicare Australia “Better Access to Mental Health Care” program Then call 0412 614 984 if you would like further information or wish to book an appointment On presentation of the validated Introduction Voucher you will not be required to pay the normal Session Fee of $120.00 but will instead be Bulk Billed. This means that you will not have to pay the difference between the standard fee and the Medicare Rebate amount, currently set at $81.60 per session, and therefore you will have no out-of-pocket costs to meet. If you are a currently registered family with LLTF we can send you a validated voucher, please email us at contact_us@lifeslittletreasures.org.au with your postal details and we‟ll get one off to you. If you, your partner or any other member of your family is experiencing any one or more of the following significant indicators of human distress, then it is time to seek professional help. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12.
diminished ability to focus and concentrate, forgetfulness and apparent loss of memory, unreasoned anger, aggression and hostility, reduced tolerance levels, mood swings, jitteriness, jumpiness, restlessness, disturbed and restless sleep, accompanied often by weird and frightening dreams, a sense of distance and isolation from the world around you, changes to appetite, eating and drinking patterns, frequent tightness in the chest, chest pains, muscular and joint pains, night sweats, headaches, shortness of breath, stomach problems, persistent coughing, sadness, “feeling down”, anxiety, fearfulness, always feeling tired and drained, no matter how much sleep you get, a sense of numbness and detachment and “being outside of oneself” – some people describe this as a surreal feeling. Nothing seems to feel the way it should feel, scattered and irrational thought processes. Your brain feels as if it has shut down and you struggle to make any sense of anything that is happening around you, a strong sense of physical “unwellness” – rubbery legs, sweatiness, particularly on the face, neck, shoulders and the palms of the hands, repeated waves of cold shivers, nausea, racing pulse, dry mouth or a metallic taste in the mouth, double or blurred vision, thirst.
Counselling Services
LLT ©2008
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Thanks A huge thank you to Michael Seychell who is running a Marathon in July for the Foundation, his employer Vodafone is going to match everything he makes in fundraising, which is fantastic. The money that is raised from this will go towards the ongoing costs associated with keeping our 24hr phone information line readily available to all families. Thank you Michael for thinking of us and thank you to Vodafone for helping Michael make a difference to such a key resource for families. At time of print Michael, has already raised over $7,000 with more expected. Great result!!. In May National Australia Bank gave us a helping hand, 11 Volunteers took a day off work to help us pack over 2,000 hospital packs. A huge thank you to all involved for donating their time. We had a fun day and got some great work done! DONATIONS Thanks to all our wonderful sponsors & supporters for their kind donations. Corporate Donations · Abracadabra (in home child care) · Sentinel Foundation · Elphinstone Pty Ltd · Tasmanian Community grants · Four Group Ltd · Earlybirds Clothing (mothers day packs)
Volunteers from NAB helping pack
We are always very grateful for your support .
Volunteering at the Foundation “Be the change that you want to see in the world” ~ Mahatma Gandhi It is through the dedication of our volunteer network that LLTF is able to continue providing services to families and their babies. The Foundation is very grateful to have such an 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 LLT F such as: · Assisting with Marketing /PR/Design · LLTF Newsletter Production · Parent Support Network · Fundraising events · Social Events · Support Groups · Busy Bee Days · “Walk for prems” – charity fun run / walk · 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. Download the volunteer registration form here – www.lifeslittletreasures.org.au/get-involved/volunteering To discuss further then please call us on 1300 MYPREMMIE or email us at volunteer@lifeslittletreasures.org.au
Thanks and Volunteering LLT ©2008
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Events for 2011 Run Melbourne – 17th July 2011 Help us to help other families of premature & sick babies Are you a runner or a walker? that‟s the biggest decision you have to make. On Sunday 17th July 2011 Run Melbourne will be held once again. This year the Life‟s Little Treasures Foundation will again be putting together a team. Including Life‟s Little Treasures Foundation Ambassador Gorgi Coghlan, co-host of network TEN‟s „The Circle‟ . Last year we raised a huge $5,000 and were able to help the Royal Women‟s Hospital buy a plasma screen for their wall of hope project. This year we‟d like to do more. There are two things you need to do:
Register for Run Melbourne – go to http://www.runmelbourne.com.au/home.php Join the LLTF team and start fundraising – go to http://runmelbourne.everydayhero.com.au/ lifes_little_treasures_foundation, then click “Join this team”. Password is “littletreasures”
It‟s as simple as that – then start training! so please consider joining us on the morning for a few fun hours.
Walk for PREMS 2011 SUNDAY 6th NOVEMBER NATIONWIDE BOOK IT IN!! After the amazing success of the first ever "Walk for Prems" with over 1000 supporters coming out on the day to raise funds and awareness for premature and sick babies, we are delighted to announce that we'll be doing it all over again on Sunday November 6th. Book the date in your dairy and stay tuned for registration details coming soon. The event will be going national this year with small social walks occurring in Brisbane, Sydney, Hobart, Adelaide and Perth. Melbourne will host the biggest event with both a walk and timed fun run as well as numerous activities. Registrations will open in August at www.lifeslittletreasures.org.au so keep an eye out! Last year over $50,000 was raised for the Life‟s Little Treasures Foundation and we hope to break this amount this year. All money raised goes to helping families and hospitals in each state of Australia Our Facebook page is also up and running so pop over and keep up to date with all the walk info www.facebook.com/pages/Walk-for-Prems-2011-Raising-Global-Awareness-of-PrematureBirths/229740573703498 To Volunteer for Walk for Prems please email us at walk@lifeslittletreaures.org.au
Events LLT ©2008
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We are delighted to announce that as of August 2011 we will be introducing a series of monthly information sessions that will be running for families of premature and sick babies. It will cover areas such as Diet, Feeding, Post Natal Depression, Dentistry, Autism, Developmental Milestones and Occupational Therapy. As the parent of a prem or sick child we are forever wondering if we are “doing the right thing”. We hope that through these sessions you will walk away with information that will enable you to become more confident in your child‟s parenting.
First Session - Dental Care There are many questions we ask about our children‟s teeth, especially since premature and sick babies often experience issues with their teeth.
Friday 12th August all your questions will be answered. We are very excited to welcome Lesa Goldfeld (Dentist) and Sarah Holslag (Periodontal Hygienist) to our first information session. They both have extensive experience with children and have a keen understanding of the issues faced by children who have been born sick or premature. They will be presenting a 1 hour information session on the dental care for children. They will also run a small clinic after if any families would like to bring the children in for advice on how best to care for their teeth. This is a great opportunity to get some one on one advice. All sessions will be followed by a morning tea and social catch up, in a warm cosy environment where the children can play. Date: 12th August 2011 Location: Phoenix Park Neighbourhood House 22 Rob Roy Road East Malvern VIC 3145 Time: 9.45am (for a 10am start )- 11:30am Children and siblings welcome R.S.V.P. – Numbers Attending by the Tuesday 9th August as space is limited Proudly support by Caulfield Park Dentist 231 Balaclava Road Caulfield,Vic 3162 Ph: (03) 9523 9058 www.caulfielddentists.com.au/contact.html
Due to the fact that there will be a lot of babies present, we ask that if you or your child is not well on the day to please skip this session! Thanks . Disclaimer All material provided during the "Premmie & Beyond" sessions is 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 the information presented; instead, the Life‟s Little Treasures Foundation suggests that families 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 during these sessions are believed to be accurate. Families who fail to consult with appropriate health professionals /authorities assume the risk of any injuries. In addition, the information and opinions expressed during the sessions do not necessarily reflect the views of LLT.
Information sessions LLT ©2008
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Congratulations To Our Biggest Little Treasure, Christopher Hill, who announced his engagement to Marcella on Valentine‟s Day this year. Christopher was born at 30 weeks on October 23rd, 1979, weighing 1600g. He spent just over 9 weeks at both the RCH and the RWH, and endured many obstacles in that time, including respiratory distress syndrome, left and right pneumothorax, a cerebral hemorrhage, and hydrocephalus (requiring a shunt). The only repercussions seem to be very mild cerebral palsy which meant a delay in Christopher‟s gross motor development. He has also since developed epilepsy, which is now under control. Christopher is now 31 and living in Canada, where he met Marcella, an Australian girl touring and working in Canada. He is a computer systems analyst, working for a company that provides software for airlines. They plan to marry in two years time, in Australia, and hopefully by then will be back here for good.
Congratulations LLT ©2008
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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).
Chadstone / Malvern
Hospitals
Dates: 2nd Friday of the month Time: 10.00am – 11.30am Venue: Phoenix Park Neighborhood House Address: 22 Rob Roy Road, East Malvern VIC 3145 Co-ordinator: TBA
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.
Dandenong / Eumemmering Dates: Last Friday of the month (excl. school holidays) Time: 10.00am - 11.30am Venue: Early Learning Services Centre Address: 54b Princes Hwy, Eumemmering Co-ordinator: Rowena
Maroondah / Knox Dates: 2nd Wednesday of the month Time: 10am - 12pm Venue: Koolyahgarra, 7 Church Street, Bayswater. Melway 64 E3, 5 mins walk from Bayswater station. Coordinator: Karin
Royal Children’s Hospital Dates: Date coming soon Venue: RCH NICU - 3rd Floor Parent Retreat Area Co-ordinator: Roster of LLT Team
Royal Women’s Hospital Date: 1st Wednesday of the Month Time: 11.30-12.30pm Venue: Royal Women‟s Hospital (4th floor) Co-ordinator: Emma
Sunningdale MCH Centre Dates: 1st Friday of the month Time: 2.30pm – 4.00pm Venue: Sunbury Maternal Child Health Centre, Address: 511 Elizabeth Drive, Sunbury (off gap road, mel 382 A3) Co-ordinator: Maternal & Child Health Nurse – Rebecca Long Cost: Free
Diary Dates LLT ©2008
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Cooks Corner Nigella’s Intense Chocolate Mousse Cake 280g chocolate (70% cocoa solids) – I used Lindt 70% Cocoa 180g unsalted butter 6 large eggs, separated 165g caster sugar 2 tbs brandy Icing sugar, raspberries, ice cream/gelato to serve
1. 2.
Preheat oven to 180ºC
Cover the outside of a spring form pan with a double layer of foil (the cake is cooked in a bain marie so the foil ensures no water gets into the cake pan) 3. Melt the chocolate and butter together, set aside to cool slightly
W: www.toddlertucker.com.au T: 0423 834 319 E: kim@toddlertucker.com.au
4. Whisk egg whites with a small pinch of salt until soft peaks 5. Add 55g caster sugar and continue whisking until stiff and shiny but not dry 6. In another bowl, whisk yolks and remaining sugar until pale, thick and increased in volume 7. Whisk in brandy 8. Fold chocolate mixture into egg yolk mixture 9. Fold ½ cup egg white mixture into choc mixture to lighten it 10. Gently fold in remaining egg white mix being very careful not to knock out all those beautiful air bubbles you have just put in 11. Pour mixture into spring form pan and place in a roasting pan. Pour enough boiling water into the roasting pan to come halfway up the side of the pan. 12. Bake for 45 mins. Top of cake will be hard and crispy, inside will be gooey and yummy.
13. Remove pan from water and place on a rack. Cool completely in the pan. 14. Remove the foil and the side of the spring form pan. Place cake on a serving platter and dust with icing sugar. Slice and serve with berries and ice cream or gelato. ENJOY!!
Some of our Sponsors & Supporters
Cooks Sponsors ThankCorner you andand raffle winners
LLT ©2008
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Register your Little Treasure Life’s Little Treasures Foundation ACN 143 037 834 ABN 94 232 874 269 Family Name…………………………………………………………………….First Name/s…………….………………………. Address………………………………………………………………………………...……….Post Code…………………...…… Email Address………………………….…………………………………...……………………………………………………….. Phone……………………………………………………………………………..Mobile…….……………………………………… Your Child‟s Name(s)………………………………………………………………………………………………………………… Date of Birth………………………………………………………………….…..Birth Weight……...……………………………… Gestation when born (i.e. 27 weeks)…………………………………Hospital where baby was born……………………...….. To maximize our community awareness we would love to find out where you heard about us……………..……………... Changed your address or contact details? If you have changed your address or contact details, please notify us by completing and forwarding the above. Method of payment $25 for Little Treasures pack, this is a once off payment which offers great value for money, it includes our parent information guide, quick way round (our comprehensive guide to resources in the community), access to latest newsletters, exclusive offers to members and some great little goodies and LLT merchandise. Pay on-line: Paypal via website www.lifeslittletreasures.org.au I have paid on-line: YES (circle if yes) OR Bank: ANZ Branch: Croydon BSB: 013-278 Acc No: 4858-50045 Account Name: Life‟s Little Treasures Please include your name as reference Cheque, money order or credit card Send cheque payable to: Life‟s Little Treasures Foundation P O Box 476, Chadstone VIC 3148 Visa
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Name on card : ……………………………………………………… Signature …………………………………………….. I would like to make a tax-deductible donation to Life‟s Little Treasures of: $5 $10 $20 $50 or $
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Volunteer response form We are a voluntary parent organisation that relies on its members to help us to continue supporting other families. Your membership contributes to assisting us in achieving our goals. We would like to inform our families that there is no obligation to be actively involved with the committee once you have registered your little treasure . However we would be delighted if you would like to help us in any of the following areas below. If so, can you please indicate which area you would like to be involved and send it Support / morning tea program
Fundraising
Media and Marketing
Busy bee or social events
Register your Little Treasure LLT ©2008