National Premmie Foundation
A national non profit organization involving Australia’s premature baby support groups, that unifies and acts as a guiding body for existing prem support groups, help to create new ones, help to improve the treatments and outcomes available for premature infants, and represent the interests of these infants and their families in terms of health policies, funding and standards of care.
The National Premmie Foundation is a global collaborative Partner of
- Bliss (UK)
- European Foundation for the Care of Newborn Infants (EFCNI)
- March of Dimes (USA)
- Little Big Souls (Africa)
NNICUPS aim is to support parents before and after the birth of their baby and especially while their baby is in the Neonatal Intensive Care (NIC) Unit.
PIPA was formed in 1980 to provide a support network for the families dealing with the Premature birth of their baby in Queensland and Northern New South Wales Hospitals. For over 25 years this work has been carried on by a large number of volunteers.
Tiny Sparks WA is a not-for-profit charity run by local volunteer families, dedicated to improving the health and well being of mothers enduring high-risk pregnancies, newborns requiring the neonatal intensive care unit (NICU) or special care nursery (SCN), and the communities supporting them in Western Australia.
Parents Who Have Been there – Adelaide Support Group
Parents Who Have Been There is a support group made up of Adelaide families who have had their babies go through Neonatal Care. They support mums and families in the NICU & Special Care units and once they get home.
Yasmine’s Gift of Hope
Yasminah’s Gift Of Hope is a support group based in New South Wales that 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.
Preemiehelp.com is an internet-based information and community resource created by qualified preemie experts for healthcare professionals, parents, friends, and family interested in, or affected by, premature birth. Their primary objectives are to increase awareness about the important issues surrounding preterm birth and to provide expert, recent, and relevant scientific information in an easy to access, easy to understand format.
Bears of Hope
Bears Of Hope offers support and guidance for parents who experience the loss of their baby during pregnancy, birth or infancy.
Helping Hand Is Here
A site that wants to help equip you with as much knowledge about services relating to all children and youth with additional needs. Subscribe and stay informed about support, services, funding, programs, media releases, news, respite, organisations, recreation and videos relating to all children with additional needs.
Bliss, the special care baby charity, provides vital support and care to premature and sick babies across the UK. Founded 30 years ago, we offer guidance and information at a critical time in families’ lives. We also fund ground-breaking research and campaign for babies to receive the best possible level of care regardless of when and where they are born.
March of Dimes
A leading American charity for pregnancy & baby health. Dedicated to improving the health of babies by preventing birth defects, premature birth and infant mortality.
The National Premmie Foundation is a proud Global Collaborative Partner of March Of Dimes.
Is a american non-profit organisation dedicated to supporting families of infants born preterm through education, support, and resources. It also acts as a mentoring and networking organization for hospital and community-based parent-of-preemie support groups. It is a division of MOST (Mothers of Supertwins): a non-profit parenting organization that provides information, education, support and additional resources for families of multiples.
Irish Premature Babies
A voluntary organisation set up in Ireland by parents who have all had premature baby. They believe there is a need to support parents through the rollercoaster journey that ensues when your baby is born prematurely.
Little Big Souls
The Voice For The Premature Baby Born In Africa “In a world where our collective consciousness can turn the tides of human situations, in a world where one voice, audible enough, can set into motion a collective emotional, spiritual and physical change in circumstances and people we believe we can offer our precious Little Big Souls, born in less privileged parts of Africa, a fighting chance”.
The National Premmie Foundation is a proud Global Collaborative Partner of Little Big Souls
European Foundation for the care of newborn infants (EFCNI)
The European Foundation for the Care of Newborn Infants (EFCNI) is a network for those involved in the care of preterm or sick newborn infants as well as a forum for scientists. It was set up to bring about long-term improvements in the care of such infants. Give the largest group of child patients in Europe the attention and support it deserves.
The National Premmie Foundation is a proud Global Collaborative Partner of EFCNI
Hug a prem East Africia
A support group that look after families who have had a premature baby in Kenya & East Africa.
Parent-Infant Reseach Institute (PIRI)
The Parent-Infant Research Institute (PIRI) is committed to supporting parents and infants (0-24 months) to enhance parent well-being and children’s healthy development through basic research and development of evidence-based interventions. It offers a unique contribution to early intervention in the development of a range of treatments to enhance parent and infant wellbeing.
Australian Multiple Birth Association (AMBA)
AMBA is a not-for-profit volunteer organisation that provides support, resources and education to families and/or carers with multiple births.
Multiple Birth Association of Tasmania (TasMBA)
The Multiple Birth Association of Tasmania (TasMBA) is a not-for-profit group which is operated by volunteer families who have multiple birth children.
There are three branches of the Tasmanian Multiple Birth Association, North West, North and South. Each of these areas runs activities which are centered around the needs of members within that area.
Multiple Birth Parents
Multiple Birth Parents is an Australian based online community forum for parents or carers of twins, triplets or a higher order of multiples.Whether you are already lucky parents of multiples or you are expecting special new additions into your lives then this is certainly the place to be. Multiple Birth Parents is a fun place to meet other parents who share the same experiences in raising multiples.
At Raising Premmies we help parents achieve peak development in their prematurely-born children. We do this by informing, guiding, teaching and counselling parents to become architects of their baby’s brain. The first years are most important but we can help and work with you and your child at any age. At Raising Premmies, we will teach you how to be the best parent of a premmie you can be – the rewards for your child will last a lifetime. We would love help you.
For further information on how we can support you, go to
Kangaroo Mother Care Promotions
Aims to promote the spread and implementation of Kangaroo Mother Care as the standard method of care for all newborn babies, both premature and full term. They aim to give firm scientific facts for medical and nursing professionals, and at the same time to convey these to all parents, to ensure babies get the best care.
Klokánkování / Kangaroo Care
Facebook Page dedicated to Kangaroo Care, provides some wonderful articles.
An American group that support families who have lost a premature baby and research to decrease premature loss.
Australian Breastfeeding Association
Information, support, discounted electric breast pump hire and a linked phone or email help line. ‘Breast feeding your premature infant’ booklet is available through their Mother’s Direct Shop.
Ph: 1800 MUM 2 MUM (1800 686 2 686) – 24hrs
Australian Lactation Consultants Association
National professional association for Australian International Board Certified Lactation Consultants.
Express at home
Melbourne based breast pump hire service, delivered to your home or hospital
Ph: 0433 95 34 34 (24hrs)
Eat Play Grow
Specialist feeding and developmental Therapy Program for Infants and Toddlers. The team work with families in the Bundoora, Vic area, to reduce the stress of feeding and mealtimes.
Lively Eaters Feeding Services
‘Lively Eaters’ is a private allied health practice which specialises in feeding and eating difficulties in children from birth through the early school years. It is based in Adelaide, South Australia, Australia. The feeding clinic provides multi-disciplinary team assessment and therapy services for a wide range of childrens’ (infant and toddler) feeding difficulties
No fuss feeding and swallowing centre
Based in Queensland, they offer limited specialist clinical services, specialising in feeding & swallowing disorders in children and adults .
Tube Fed Kids
A social networking site for families and friends of tube fed children (past or present). This site serves as a good tool to share information and stories, help with tube feeding issues and most of all help with tube weaning issues. The transition from Tube Feeding to oral consumption is a long road for most children and their families
Notube.at is the first website offering an effective online medical coaching service (netcoaching program) for children with early eating behavior disorders, particularly tube dependency. The Netcoaching program is based on the “Graz method of tube weaning”, through which more than 1000 tube dependent children over the past 20 years have been weaned successfully. Since the beginning of the Netcoaching program in summer 2009, 96% from a total sample of 92 tube fed children from all over the world have been weaned successfully.
Australian Support Network for Eosinophilic Esophagitis and related disorders
An Australian charity whose mission is to improve the lives of those affected by eosinophilic gastrointestinal disorders by providing support and information and to campaign and raise funds for further research in Australia.
Complex Child E-Magazine
Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities.
It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand. Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials.
HELLP Syndrome Society
A non-profit corporation whose mission is to raise awareness about the condition of HELLP Syndrome, raise money for research, provide support to families affected by this condition and conduct research on the condition.
The HER Foundation
The HER Foundation is the world’s largest grassroots network of Hyperemesis Gravidarum(HG) survivors and leading site for HG information on the Internet. HER is dedicated to helping those suffering hyperemesis and those who have survived it. Only those who experience HG can truly understand how difficult it is! The Foundation is here to be a voice of support and education to all who are faced with managing HG.
Precious Premmies Lunch, a very special event to raise money for some of the most special little people, Premmie babies at the Mater Mothers Hospital in Brisbane.
Australian Action on Pre-eclampsia (AAPEC)
Australian Action on Pre-eclampsia Inc. (AAPEC) is an association incorporated in Victoria. It is a voluntary organisation set up to provide support and information to families who have suffered from pre- eclampsia.
The Pelvic Instability Association
(PIA) is a not-for-profit organisation, staffed entirely by volunteers, based in Victoria – Australia with members across Australia. They provide support and information to women and families affected by Pelvic Instability in Australia.
The Pelvic Instability Association Inc (PIA)
PO Box 449
Ph: (03) 9539 3217
Bub Born Early
The Site for Bubs Born Early, their Parents, Family and Friends and Home to The BubBE Book…an NICU Journal. The BubBE Book and this site have been created to provide a source of information, inspiration, guidance and hope for the family and friends of Bubs Born Early, otherwise known here as BubBE’s.
Keep ‘Em Cooking
Keep ‘Em Cookin’ is an educational organization that gives pregnant women the greatest opportunity to prevent preterm birth by providing them with the most current information on high-risk pregnancy and by offering them online community support.
Mamas on bed rest
Provide support, information, resources and services to high risk pregnant mamas and new mamas. They have a plethora of information on pre and post partum health, fitness, nutrition, advocacy, parenting and maternal and infant health and wellness.
ReadyStepGrow™ is a dedicated team of professionals enriching early learning and development for babies born preterm or sick. They know it is ‘experience’ that shapes the brain and our service is based on the brain’s amazing ability to rewire itself. The team at ReadyStepGrow understand the significance of prematurity and offer pathways to support parents and enrich early learning and development for babies, toddlers, preschoolers and school age Premmies. A Melbourne based organisation that provides psychology and education services: evidence-based knowledge, assessment, counselling and programs.
PANDA is a Victorian, not-for-profit, self-help organization that was formed in 1985 to provide confidential information, support and referral to anyone affected by post and antenatal mood disorders, including partners and extended family members.
PANDA also produces and distributes accurate information about post and antenatal mood disorders to health professionals and the wider community.
How is Dad Going?
This website provides all kinds of dads with access to the best information and resources. You might need some extra support if you or your partner are struggling with mental health issues in the perinatal period – the time leading up to and after having a baby. Like all health conditions, a time of high stress or a period of depression and anxiety, or even psychosis, will pass but the more you know and can do to help you and your partner the better the outcome. It is a website developed by the team at Panda (www.panda.org.au)
Beyondblue is working to reduce the impact of depression and anxiety in the community by raising awareness and understanding, empowering people to seek help, and supporting recovery, management and resilience.
This is the first national set of remembrance services for people who have suffered the loss of a baby at any stage of pregnancy, at birth or in infancy. The services are free to attend and are taking place between March and December. There are over 20 locations in the UK and Internationally during 2013. See more details on website.
Sids and Kids – Bereavement
SIDS and Kids bereavement support services assist families who have experienced the sudden and unexpected death of a baby or child, during birth, pregnancy or infancy, regardless of the cause
More than thirty years on, Sands continues to provide support to all bereaved parents and families who have suffered the death of a baby anytime from conception through to 28 days after birth – this includes miscarriage, neonatal death, stillbirth, ectopic pregnancy and genetic/medically advised termination.
CLIMB – Center for Loss in Multiple Birth
|parents throughout the United States, Canada, Australia, New Zealand and beyond who have experienced the death of one or more, both or all of our twins or higher multiples at any time from conception through birth, infancy and childhood. We originated in 1987, when a mother whose twin son died very suddenly at birth believed that she was truly the only one – then began to search for “a few” others. Soon, she was hearing from families everywhere who were struggling to cope and heal from the devastating loss of their twin or twins, their triplet or triplets or other higher multiples, in a wide variety of circumstances – in sad contrast to the happy images of multiples portrayed in the media and elsewhere.
Sids and Kids – Treasured Babies
A booklet by and for parents whose baby is stillborn or dies soon after birth.
The death of a loved one is hard to understand at any time but, for many, the loss of a baby is incomprehensible. Yet this loss is experienced by one in every hundred families. For those families, the stillbirth or death of their newborn is something that will affect them, and their families, for the rest of their lives.
My Grief Assist
A place where you will find a broad range of helpful information on loss and grief. Coping with grief can be a daunting, difficult time in anyone’s life. Whether you’re looking to support someone you know or if you need help for yourself, you’ll find something valuable here.
Their Fact sheets cover a wide range of subjects and are written by experts in their fields.
“How to Express Your Condolences ” – Choosing the Perfect Words
A Beyond Blue initiative for men. Man therapy is designed to get blokes to take practical action to take charge of depression and/or anxiety, and to combat suicidal thoughts.
But it also can be a valuable resource for their mates or loved ones.
Renovate Your Relationship
A site that provides Postpartum Depression help and hope from thousands of moms who’ve been there. We understand & we can help.
Not just about wee
Yuz, an LLTF mum, has had two premature babies both born at 36wks. She is a PND/PPD/PPA survivor having been admitted to (as she says) the nuthouse following her daughters birth in 2009. This is her ongoing story and journey of both enduring and enjoying motherhood.
Kids Plus Foundation
Provides intensive, paediatric therapy programs for babies, children and teenagers with neurodevelopmental disabilities, in particular cerebral palsy, the most common form of childhood physical disability.
This program works with children and their families in the Barwon Region to access regular, high quality therapy, which is crucial to long term outcomes developmentally, functionally and medically.
Cerebral Palsy Foundation
The Cerebral Palsy Foundation was established to take on the global challenge of finding the prevention and cure for cerebral palsy. Australian based
Cerebral Palsy Education Centre Inc (CPEC)
Cerebral Palsy Education Centre is acknowledged as a unique and successful specialist education service for children with cerebral palsy and their families.
Cerebral Palsy Guide
Their main goal is to raise awareness about cerebral palsy and the children and parents who it affects. Cerebral palsy is a disease that can affect children and adults in different ways, but most commonly is affects their coordination and muscle movement. Cerebral Palsy Guide provides free educational information, financial options, and emotional support for those affected by cerebral palsy (USA based).
Cerebral Palsy Guide
They provide vital guidance and assistance to parents of a child with cerebral palsy (USA)
Cerebral Palsy Symptoms
Their mission at CerebralPalsySymptoms.com is to provide the public with accurate and up to date information on the many aspects of cerebral palsy and other birth injury complications. The team strives to maintain a comprehensive free resource so those interested or concerned about their children can take actions to protect them. If you would like to get in touch with the team they can be reached at email@example.com (US based).
My Child without Limits
MyChildWithoutLimits.org is designed to be an authoritative early intervention resource with a social networking element for families of young children ages 0-5 with developmental delays or disabilities, and professionals looking for a single, trusted, aggregate source of information that relates to their needs and interests. Looks at areas such as: Prematurity, Cerebral Palsy, Autism, Down Syndrome, Epilepsy, Spina Bifida, Hearing & Sight Loss, Rett Syndrome & Muscular dystrophy.
The Smile Foundation
The SMILE Foundation is a groundbreaking national charity that was established in 2007 to improve the quality of life of children with a rare disease or condition. SMILE provides financial assistance to families of affected children as well as supporting research relating to rare childhood medical conditions. SMILE is also committed to raising awareness of rare childhood diseases.
Support for Mums
Support for Mums is an Australian not-for-profit organisation that will assist mums and their families through circumstantial crisis. Circumstantial crisis may include high risk/difficult pregnancy, an unwell baby or child, unwell immediate family member. Perinatal depression or any crisis that inhibits a family carry out day-to-day tasks.
Support for Mums will provide information and referral, practical assistance and or funding to ensure practical tasks are carried out relieving pressure on the family.
Held was developed by Recover Australia directors, Lindsey Crockett and Jane Campbell due to the increasing need for women and men to have a specific service dedicated to birth trauma rather than being lost within mainstream mental health services or not being supported at all. At Held, they aim to hear and acknowledge what often remains unspoken about women and men’sexperiences of birth and early parenting.The Held team believe that being pregnant and giving birth of any kind can trigger emotions we are not prepared for or expected and that every parent, new or seasoned has a right to discuss their experiences in an environment that is supportive, non-judgmental and understanding. They provide that space for you.
A group of young adults that run a charity for siblings and carers of children with a disability. They found that there is a need for support for the siblings of sick children, as well as young carers who are put into a position of caring for their unwell/unfit parent. Little Dreamers is around to support the sometimes left out kids, the kids that are sometimes forgotten about or are unable to do things like their friends.
A Parents Guide to First Aid
In homes where there are small children, safety is an important issue. Parents want to protect their children from all potential dangers and will most often take steps to make their home as safe an environment as possible. This site covers areas such as How to Keep Your Home Safe, How to Teach Your Child About First Aid & Emergencies and First Aid for a New Parent with useful tips and fact sheets.
The Little One – Premmie Milestone Cards
Introducing Premmie Milestone Cards – a range of 39 beautifully designed cards by the girls from The Little One used to visually capture key milestones premmie babies strive to reach.
Each card has a milestone unique to a premature baby’s special journey; ‘My first kangaroo cuddle’, ‘My first breastfeed’, ‘No more CPAP for me’, ‘My first bath’. The back of each card includes space to write the date, age, weight and gestation of the baby when they reached the milestone.
Created and designed in conjunction with parents of premmie babies, these cards have been designed specifically for NICU and Special Care nurseries with soft, pastel colours and beautiful watercolour features.
Available to purchase in the LLTF store HERE
Karen Shackelford, MD
Below are various articles written for families by Dr Karen Shackelford
Learning First Aid – http://www.aclsrecertification.com/keep-your-family-safe-learn-first-aid/
Guide to a Healthy Heart – http://www.aclsrecertification.com/guide-to-a-healthy-heart/
More articles can we seen HERE
For families in the Barwon-South Western Region. Services are provided to children with developmental delay, autism spectrum disorder or a diagnosed disability, and their families.
Services include autism assessment and diagnosis, early intervention services, preschool support and inclusion, and assistance with transition to school planning.
Kildonan Uniting Care
Kildonan Uniting Care is one of Australia’s oldest community organisations. They provide a hospital based fianancial counselling service at the Royal Children’s Hospital.
Raising Children Network
A fantastic Australian Parenting website, an excellent resource for any family. Created by a partnership of member organisations of Australia’s leading early childhood agencies, the Raising Children website is produced with the help of an extensive network including the Australian Government. The Raising Children Network website is based on the philosophy that all children and families are individual and different. They provide scientifically validated information, translated into everyday language, to help parents and carers make decisions that work for them in their individual family circumstances.
A parenting website by busy parents for busy parents. We have a wealth of information available to make life easier, simpler and less chaotic. Busy Mothers is home to The Busy Mothers’ Companion a resource to help parents manage their busy household.
Pregnancy, Birth & Beyond
Up-to-date and extensive source of information and support for pregnancy, birth and parenting. Pregnancy, Birth & Beyond supports independent midwifery services and quality childbirth education.
Through this website you will be able to find lots of information on midwifery care, pre-conception care, pregnancy, birth, waterbirth, homebirth, vaginal birth after caesarean, postnatal care and breastfeeding.
A social network created especially for mums. Find out what activities and support services are available in your area, chat to other mums.
KIDS FIRST is a course designed to provide parents and carers with children aged 0 – 12 with the skills to provide basic First Aid and emergency care for children. If you are a new parent or are responsible for the care of young children the you owe it to those loved ones to know what to do in and emergency, because when it comes to saving a life MINUTES MATTER.
Online First Aid Guide for families
“Knowledge is the first line of defence when a family member or child suffers an injury or develops symptoms of an illness. Those initial moments of care can make all the difference between a full recovery and long-term damage. We’ve compiled a list of first aid categories and well-respected sources to help educate your family on basic first aid for nearly every emergency situation” Dr. Mary Williams, R.N. D.C.
Join the Huggies Baby Club for special offers, baby information, fun & games!
As parents who care for children with a disability, Tanya & Michelle felt compelled to compile their thoughts, ideas and experiences to help other families navigate their way through what can only be described as the ‘maze’ of disability services. They have written You are Not Alone – A Carers Journey to provide guidance and advice to parents and carers centred on a child’s early years, from birth to six years of age.
First aid training for parents, grandparents and babysitters. They are a leading provider of quality first aid training and products that are baby and child specific.
Kids First Aid
Kids First Aid offers first aid courses delivered exclusively by experienced paramedics, designed to teach parents and caregivers how to respond calmly and confidently to 10 of the most common first aid emergency situations
Kids In Australia
Kids In Australia is a resource and information website which has been designed by parents, for parents. They have done it all for you and wrapped it up in this comprehensive, easy-to-use and fun website. Their Mission Statement is to connect parents with businesses and information which can help smooth the path to raising healthy, happy and confident kids.
Ph: 1300 170 020
The Blood Cord Centre
Their goal is to provide information for expectant mothers and families considering cord blood banking – they want to help you find the right option for your loved ones. Whether you choose private banking for the safety of your family, or public banking to help patients in need of a transplant, The Cord Blood Center is committed to giving you relevant, up-to-date information on benefits, pricing and current research for cord blood stem cells. (US based).
65 Baby Care Tips for First Time Parents – The Ultimate Guide
The birth of a first child can be a daunting affair, and one that is fraught with questions. It is the beginning of a whole new era, normally one of sleepless nights and endless diapers. Even the most organised new mom will feel the strain of the new addition.
This covers some tips for first-time parents, to help along the way and ease the load of parenthood.
Dad Shane Graham, who himself has had a prem baby (little Isla) is a financial planner and works with other charities helping families on a pro bono basis. He is very keen to assist any families who have had a premature or sick baby and are struggling with finances. Doesn’t matter where you live, he can travel or speak with you over the phone. He understands the financial strain that a family can experience when having a prem or sick baby.
Shane Graham, Dip FS(FP) AFP®
Financial Planner, Authorised Representative of A.M.P Financial Planning Pty Ltd
A.B.N 89 051 208 327 A.F.S Licence No. 232706
Swan Hill Office:
12 Pritchard Street, Swan Hill, VIC 3585
Ph: (03) 5032 9111
Heartfelt is a volunteer organisation of professional photographers from all over Australia dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature births, or have children with serious and terminal illnesses. Heartfelt is dedicated to providing this gift to families in a caring, compassionate manner. All services are provided free of charge. Call 1800 583 768 to contact an Australian Heartfelt photographer
LaDeDa Professional Photography
Shoshanna Sibony is a professional photographer based in Melbourne, offers her “Little Hugs” service for families of extremely premature or seriously ill bubs and kids. They offer a FREE photography shoot.
Tiny D’s Photography – for your little miracle
Katia de Santis is a Melbourne photographer who’s son, Dante, was born at just 29 weeks last year and subsequently spent two months in the neo-natal intensive care unit (NICU), she provides free photography sessions for families with babies in NICU or Special Care or who are sick, free of charge.
Open Colleges – counselling courses
Open Colleges’ practical and unique courses let you study online at your own pace, but still provide the best in student and tutor support, so you always feel connected and supported in your study.