LLTF newsletter December 2012

Newsletter

December 2012

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.

President’s Welcome Hi All, Can you believe the months that have flown by! It just felt like yesterday when I sat down to write my welcome for the last issue of the newsletter.

Since then we have been very busy bees with the launch of our new look in August and the biggest ever Walk for Prems to date!

First things first: Rebrand launch - what a great turn out we had from all our supporters, families and friends in the hospital, corporate, philanthropic and government communities. It was wonderful to share this special evening with all of you – it is with your support and commitment that we have been able to (cont...)

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

1300 mypremmie/1300 697 736 736

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

(cont...)get where we are today. Special thanks to Matt Tilley for being such a fantastic MC yet again and to Tatum and Paul for sharing their very personal journey with us and capturing the hearts and minds of those who were there.

There was not a single person who wasn’t touched to hear their inspirational story.

We were also delighted to launch our rebranded nationalised hospital folder, A Guiding Hand to NICU and Special Care which will be given for FREE to all families in NICU/Special Care. This resource folder has been designed to empower families of premature and sick babies.

It assists families to cope with the birth of a premature baby by providing essential, research-based information on early intervention, childhood development, health and community services.

A big thank you to all the parents and health professionals who collaborated with us to produce this vital resource for families. Thanks also to all the hospitals nationally who have come on board to distribute this folder to their families – without your support, we would not be able to deliver this service to those families in need.

I have been overwhelmed by the wonderful response we have had from both families and health professionals so far.

It just goes to show the need for a resource like this to help families at such a vulnerable time in their life. I would also like to say special thanks to our ambassador Brooke Hanson for her personal welcome note and our health ambassadors Professor Peter Anderson, Director VIBes, Murdoch Children’s Research Institute and Dr Gehan Roberts, DevelopmentalBehavioural paediatrician at the Royal Children’s Hospital in Melbourne for their contribution.

Next: Walk for Prems 2012. Wow what a big day it was!

The weather gods were kind to us throughout Australia with over 3000 people taking part in the event creating an amazing sea of orange!! The event is getting bigger and better each year as it grows – we can’t wait to see what 2013 has to hold for us.

The fundraising efforts have also been tremendous. With everyone’s help, we have broken our fundraising target of $150,000 and raised $174,000. This is such a fantastic result – we are absolutely thrilled and delighted!!. A big thank you to all the families across Australia who couldn’t walk but raised funds in many other ways, such as BBQs, raffles, gold coin days, morning teas and company donations.

With this money, we will be able to reach more of the 45,000 families who have a baby in Neonatal Intensive Care and Special Care Nurseries. Alongside our current support services we will also be able to provide these families, free of charge our hospital folder, A Guiding Hand to NICU & Special Care that I mentioned earlier. Thank you for making it possible for families in need to receive one.

Walk for Prems wouldn’t have been such a success and memorable day without all the people and organisations that were involved in making it happen. Although there are many to thank, I would like to say a special thank you to all our wonderful volunteers – you are the foundations of LLTF, our ambassadors and supporters – Brooke Hanson, Clare Bowditch, Brodie Holland and Leigh Harding and our

Christmas in the NICU or Special Care Unit

wonderful corporate sponsors - Medela, Earlybirds, Kidspot, Living Textiles, Evans and Peck, PAMS and Michael Kouril Pty Ltd, without whom this day would not have been possible.

We can’t wait to see what 2013 has to hold for us. We look forward to seeing you all then.

Shortly after Walk for Prems, preparations continued for World Prematurity Day on 17 November. We were very honoured to be part of the official group representing Australia in a worldwide campaign to raise awareness led

by March of Dimes and World Prematurity Day ambassador, Celine Dion. On the day, LLTF as part of the National Premmie Foundation, a co-founder of World Prematurity Day, showed their support by being part of the ‘light it up purple’ campaign which saw many icons around the world including the Empire State Building and Questacon building in Canberra being lit up in purple to mark the occasion.

Many families also lit purple candles at 7pm to show their support for the day.

Coping with having a baby in NICU or SCU during the Christmas period can be extremely difficult.

Whilst other family and friends are visiting, celebrating and gathering together it can be very challenging to have one of your family members in hospital at this time.

We have also been very honoured throughout the year to be asked to take part in various research programs being conducted into prematurity. It is an area that we are very passionate about and we are delighted to be a part of it.

Next year will also see us involved in some further ground breaking research, all will be revealed next issue!.

With the year now coming to a close (scary thought isn’t it!), we are now looking at our plan and strategy for next year. We have lots in store and look forward to sharing our news and program with you soon. As previous years, we also be will be holding Christmas celebrations for families with babies in hospital by holding our Christmas tree decorating morning tea.

Christmas is a time for celebration but for those with babies in hospital, it is a difficult time of the year both emotionally and financially. In the spirit of Christmas and as a way of extending our support we run our Christmas giving program which provides financial assistance to a family that has been nominated by hospital staff. This year for the first time, we are thrilled to be able to extend this program nationally with a family from every state being provided with assistance. More news of our Christmas festivities and giving program in the next issue.

That’s all from me for the time being. Before we kick on with the next phase and 2013, it is time for us to have some rest and respite from a very busy year. Until next year, take care and have a relaxing summer break and a wonderful Christmas with your loved ones. May 2013 bring you lots of peace, joy and happiness.

Love, light and laughter to all,

Parool

Co founder/Director

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

lifeslittletreasures.org.au

Some of our LLTF families who have been through this experience would like to share their thoughts on having a baby in hospital at this time. Hopefully some of their ideas or advice might make it that little bit easier for you if your baby is in NICU or SCU during the holiday season.

Thank you!!

A very BIG thank you to everyone big and small who have helped us throughout the year, the generosity and kindness has been overwhelming and greatly appreciated. The Foundation receives no government funding and so depends largely on the funds raised through its events and fundraising conducted by families.

There are just so many people to thank we can’t name them all but to all those who took part in Fun Runs around the country, took part in Walk for Prems, held BBQs, raffles, gold coin days at school and work, morning teas, donated the funds raised from birthdays and christenings, bought our pins for weddings, got their companies involved or assisted us pro bono, we thank you most sincerely, we couldn’t have done it without you. You have enabled us to do so much and help so many more families this year.

1300 mypremmie/1300 697 736 736

• Don’t push yourself. If you don’t feel like you can make it to every holiday celebration or can’t find the time or energy to address Christmas cards, don’t do it. People will understand. take the time you need to rest, care for yourself and visit your baby.

• Find enjoyment wherever you can. It is normal to be torn between a desire to participate in family traditions, and a yearning to be in the hospital as much as possible. Parents may feel guilty, not only for spending time away from their child, but also for enjoying themselves.

Enjoying yourself is okay. However, if you do not feel up to joining all of your family’s activities, enjoy one or two, then, head back to the hospital.

• Bring close relatives to visit your baby and have a little holiday celebration at the NICU. Find out how many people you can have at the bedside, and go open a few gifts with your baby.

• Make some Christmas memories to share your baby with friends by taking photos or a video to send. Add a baby’s first Christmas hat or bib to the photo if you can. Hanging a small decoration for your baby on you Christmas tree can assist making it feel like your baby is with you in spirit and when hung on the tree in future years can remind you how far your baby has come.

• Take advantage of any parent support services provided by your hospital. Talk with a chaplain, social worker or support group.

• Start new traditions if old ones are no longer as meaningful.

• Try to focus on the positives, every gram gained is a miracle.

http://www.kristiemcnealy.com/coping-with-christmas-in-the-nicu http://typeaparent.com/tips-for-celebrating-and-coping-with-christmas-in-the-nicu

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

our new look!

After 7 years we now have a brand new look and we are delighted with it!

Welcome to our new logo We have had a lot of great feedback on the logo with everyone taking away a personal belief of what it represents – some thoughts have included a parent holding a baby, a tiny foot or a heart.

New Brand Launch Party On the 28 August 2012, we launched our new look!

A lot of discussions and thought went into what we wanted as a new logo and what we wanted it to represent.

What a great turn out we had from all our supporters, families and friends in the hospital, corporate, philanthropic and government communities. It was wonderful to share this special evening with all of you – it is with your support and commitment that we have been able to get where we are today.

Most importantly we wanted it to reflect: • Warmth • Positive Energy • Compassionate

Special thanks to Matt Tilley for being such a fantastic MC yet again and to parents, Tatum and Paul, for sharing their very personal journey with us and capturing the hearts and minds of those who were there on the night. There was not a single person who wasn’t touched on hearing their inspirational story.

• Inspiration • Strength And we also wanted to ensure it portrayed our Core Values: • Empathy • Integrity

We were also delighted to launch our rebranded nationalised hospital folder, A Guiding Hand for Families in NICU and Special Care which has been given to hospitals to distribute FREE to all families in their NICU/Special Care units. This resource folder has been designed to empower families of premature and sick babies by providing essential researchbased information on coping whilst in NICU and SCU, early intervention, childhood development, health and community services.

• Passion • Knowledge • Trust The overall theme being • Positive Beginnings

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

lifeslittletreasures.org.au

1300 mypremmie/1300 697 736 736

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

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.

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.

Download now FREE from itunes or soon through Android stores!

Some of the many features of the app include: • Records baby’s birth details • Keep journals for multiple babies • Converts actual age into corrected age (weeks)

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).

• Tracks weight, feeding, expressing and temperature in graphs

Hospital folder 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.

Our Online Resource

• Journal section for parents to record their emotions and feelings

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.

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

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.

What’s covered: • Services provided by the Life’s Little Treasures Foundation

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.

• Neonatal care explained Download now FREE from itunes or soon through Android stores!

• Kangaroo Care • For dads • Coping strategies • Bereavement • Listing of community services and resources.

• Prematurity-related developmental and birth statistics

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.

• 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

The folder is currently being distributed to hospitals throughout Australia and the feedback we have been receiving so far is fantastic. The first print has literally run out of our warehouse and we have just completed a second print run.

• Informative newsletters covering topics that are specific to premature or sick babies, providing families with up-to-date information and resources

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

• Information on support in the community

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

• Practical tips and information

lifeslittletreasures.org.au

1300 mypremmie/1300 697 736 736

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

Development milestones, developmental delay and early childhood intervention

Development Milestones in the first year

W

atching and waiting for your child to reach milestones is an exciting part of parenting often filled with trepidation for the parent of a premature or sick baby. As those well meaning friends and relatives around you ask if your child has sat up, rolled over, said a first word, moved to solid food etc you are still counting your blessings that your little one is here with you.

Development milestones are deemed to fall into three categories-

Physical milestones involve both large and fine motor skills.

These include sitting up, crawling, grasping onto items and using fingers to poke at things.

Social and emotional milestones involve how the child relates to the world and to the people and things in it. In an infant this includes playing peek-a-boo, being quiet when a new person enters the room and seeking the security of those people familiar to them.

Communication and language milestones range from basic non verbal communication through to first words and laughter these milestones are generally experienced in a child’s first twelve months.

Throughout the first 12 months of a child’s life these areas of their wellbeing grow and evolve.

Often even in the healthiest children this development is not linear; that said the table on the right is a suggested list of the millstones and at what age they should occur:

The various areas of the brain

Forewarned is forearmed We meet parents all the time who say ‘I wish I had known about developmental delay and the importance of early childhood intervention’. Having a premature or sick baby is a completely new experience and we learn new things as we go. Most premature or sick babies do not experience developmental delay. We discuss this information not to scare parents, but to inform you and allow you to make informed decisions and be a better advocate for your child’s needs.

What is the cause of developmental delay?

An Infant’s First Year: Developmental Milestones 1 month

• Brings hands toward eyes and mouth

• Moves head from side to side when lying on stomach

• Follows an object moved in an arch about 6 inches (about 15 cms) above face to the midline (straight ahead)

• Responds to a noise in some way, such as startling, crying, or quieting

• May turn toward familiar sounds and voices

• Focuses on a face

3 months • Raises head 45 degrees (possibly 90 degrees) when lying on stomach

• Opens and shuts hands

• Pushes down when feet are placed on a flat surface

• Swings at and reaches for dangling toys

• Follows an object moved in an arch above face from one side to the other

• Watches faces intently

• Smiles at sound of mother’s voice

• Begins to make speechlike sounds • Rolls over one way, usually from stomach to back • Reaches for objects • Recognizes people at a distance • Listens intently to human voices • Smiles spontaneously • Squeals in delight • Bears some weight on legs when held upright • Transfers objects from hand to hand • Looks for dropped object • Responds to own name • Babbles, combining vowels and consonants • Wiggles with excitement in anticipation of playing • Plays peekaboos

Developmental delay and early childhood intervention

• Walks by holding furniture; may walk one or two steps without support • Stands for a few moments at a time • Says “dada” and “mama” to the appropriate person • Drinks from a cup • Claps hands and waves bye-bye

All this development takes place as the result of synapse production which occurs rapidly from 0-12months.

Synapse production is the formation of electrical currents between the brain and the body to undertake various tasks and keeping this impulse path open for further acquisition of skills of knowledge

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

• And an environment that does not provide the essentials for the child to develop the skills that are commonly needed in our society.

Granata Books, London, pg 24.

12 months • Gets into a sitting position from stomach

lifeslittletreasures.org.au

• Something that interferes with the brain;

Decreased gestation time, illness or medical intervention can all effect the synapse production for the areas of the brain. The part of the brain that is impacted upon, the timing, duration and impact all alter which area of development may be affected and how that impact is reflected through the child’s growth in the first year.

Fernyhough, Charles 2009, The baby in the Mirror,

• Objects if toy it taken away • Crawls or creeps on hands and knees • Pulls self up to standing position • Stands holding on to someone or something • Says “mama” or “dada” indiscriminately

A child’s development can be negatively affected by three basic factors: • Something that interferes with the child’s body; (and these two are often closely connected);

Although premature and sick babies often ‘catch up’ to the norm any development concerns regarding your child should be directed to your child’s physician.

9 months • Works to get a toy that is out of reach

This is where early childhood intervention plays a very major role.

The sooner an issue is tackled, the quicker a child’s development can be addressed, leading to improved outcomes for both the child and their family.

The brainstem is the hub of the activity and controls heart rate, sleep and emotions concerned with self control and anxiety.

Yet, the amazing thing that has been discovered about the brain if that one area is unable to develop to its full potential the brain uses the other lobes to maximise function often this is why the development may be slower but eventually catches up once the brain retrains itself to complete the required function

7 months • Sits without support

The frontal lobe and cerebellum have the greatest impact on the physical milestones as they control the balance, muscle coordination and walking. Conversely the temporal lobe is the communication hub of the brain and develops speech, response to others and also contributes to emotions.

Cognitive milestones are primarily dealt with from the parietal lobe which deals with taste, touch and co-ordination. The Occipital lobe deals with the social and emotional milestones as it stores information regarding visual recognition and sight data.

5 months • Holds head steady when upright

Source: www.babycenter.com.au/baby/development/brain/visualguide

A baby’s rate of development is determined largely by a combination of genetics and their environment. Every baby/ child develops at a different rate, rolling and crawling at different times to their peers, and as long as a baby’s development is within the range of what is considered normal then there is no need for concern. But while most babies have a cosy nine months to grow and develop, a baby who is born premature or sick has had this important development time interrupted.

It’s only when a baby/child consistently reaches developmental milestones much later than other children that parents need to take action and seek professional advice.

How do I know if my baby is developmentally delayed?

The key here is addressing the issue as early as possible. A mother does know best – you are, after all, the person who spends most of the time with your child.

Things to watch out for - Milestones are only a guide.

Unless you’re seeing delays in a few different areas over several months, it’s unlikely there’s anything wrong if your baby seems slow to do some things compared to other babies. Try to resist the temptation to compare your baby with others, because this can lead you to worry when you don’t need to.

As a general guide, though, seek help if you notice your baby:

What is developmental delay?

• doesn’t consistently respond to sounds

Developmental delay is the term used when a young child is slower to reach milestones than other children. Delay may occur in the way a child moves, communicates, thinks and learns, or behaves with others.

• doesn’t look at you

Professionals usually only use the term developmental delay until the cause of the delay is identified. A delay may be transient (temporary) or persistent (permanent). Persistent developmental delays are also called ‘developmental disabilities’.

1300 mypremmie/1300 697 736 736

• doesn’t seem to see things, has white or cloudy pupils, or there’s something about his eyes that bothers you • isn’t interested in what’s going on around her • doesn’t move or use both arms and/or legs • has an unusual cry (for example, a high-pitched squeal) • is persistently crying for more than about three hours every day (babies cry on average for about two hours a day, peaking between 6-8 weeks), especially after 3-4 months

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

• can’t hold his head up by the time he’s reached 3-4 months • isn’t sitting well by 10 months • doesn’t want to bear her own weight by 12 months.

Areas a child may have difficulties in are: • Gross motor skills (e.g. crawling, walking) • Fine motor skills (e.g. grasping and manipulating objects) • Speech and language (understanding and speaking) • Self-help (e.g. feeding, dressing, toileting) • Social and play skills • Behaviour • Sensory integration (processing everyday senses) • Unusual behaviours (such as avoiding or seeking out touch, movement, sounds and sights)

are funded through the Department of Education and Early Childhood Development (DEECD) and provided by Specialist Children’s services teams and Early Childhood Intervention agencies.

The overall aim of these services is to provide parents and families with the knowledge, skills and support to meet the needs of their child and to optimise the child’s development and ability to participate in family and community life. All services are provided using a family-centred approach, recognising the importance of working in partnership with the family.

Who can refer a child to Early Childhood Intervention Services?

www.raisingchildren.net.au

Parents may refer their child to Early Childhood Intervention Services. Providing they have parent or guardian consent a range of people including paediatricians, general practitioners, maternal and child health nurses, child care professionals and kindergarten teachers may also make referrals.

What is early intervention?

Information on services

The very early years of a child’s life provide a unique opportunity to influence their development. When children are still very small, many parts of their brain and body are still developing, and that development can be facilitated in certain directions. The specialists select from various approaches to develop a program that is specific to the needs of each child and family, and that has the appropriate intensity and timing, plus ongoing evaluations of its effectiveness.

Information on services can be obtained between 9 am and 5 pm Monday to Friday on the State-wide phone number (and ask for Early Childhood Intervention Services).

P: 1800 783 783 www.education.vic.gov.au/ecsmanagement/intervention

A key resource for information on baby’s development can be found at the “RAISING CHILDREN NETWORK” - the complete Australian resource for parenting newborns to teens.

Early intervention programs aim to intervene as early as possible to: • Minimise the impact of a disability (e.g. learning alternative ways to communicate or carry out daily tasks); • Minimise ongoing risk factors (e.g. teaching parent’s better ways of understanding and helping their child);

Interesting Links www.raisingchildren.net.au/articles/ how_babies_develop_what_to_expect.html www.education.vic.gov.au/ www.education.vic.gov.au/ecsmanagement/intervention www.zerotothree.org/child-development/ www.zerotothree.org/baby-brain-map.html - Interactive Baby Brain Map

• To help direct a child’s present development to lay foundations for future development (e.g. strengthening the muscles that will help a child walk in the future); • To strengthen families (e.g. help them cope with the stresses and strains).

Article References:

How do I get help?

The type of individual intervention that is right for a child will depend on assessments of the child and the family. The very first line of assessment may be the maternal and child health nurse in your area, your paediatrician or GP. They, along with kindergarten teachers (if your child has started school), may make a referral for you to an appropriate early childhood intervention service.

Government assistance Early Childhood Intervention Services (ECIS) support children with a disability or developmental delay from birth to school entry and their families. ECIS provides special education, therapy, counselling, service planning and coordination, assistance and support to access services such as kindergarten and child care.

Services are tailored to meet the individual needs of the child and focused on supporting the child in their natural environments and in their everyday experiences and activities. These services

Adesman MD, Andrews 2009, Baby facts, JW Wiley, Hoboken.

Chilton MD, Howard 2009, Baby on Board, Finch Publishing, Sydney.

Fernyhough, Charles 2009, The baby in the Mirror, Granata Books, London.

St Connecticut Birth to Three (0–3 years of age). By Elizabeth L Hart PhD, Clinical Child Psychologist Premmie Press. September 2005 Department of Education and Early Childhood Development website Stoppard MD, Miriam 2001, Complete baby and childcare, DK Publishing, London. www.raisingchildren.net.au/articles/ how_babies_develop_what_to_expect.html www.essentialbaby.com.au/baby/baby-stages-of-development/ developmental-milstones-the-first-year-20080919-4k25.html www.babycenter.com.au/baby/development/brain/visualguide www.merckmanuals.com/home/childrens_health_issues/newborns_and_ infants/behavioral_social_and_intellectual_development_of_infants.html www.emedicinehealth.com/infant_milestones/article_em.htm#infant_ milestones_introduction en.wikipedia.org/wiki/Neural_development#Synapse_formation www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Child_ development_(1)_newborn_to_three_months?open

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

lifeslittletreasures.org.au

Renae’s story

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e were surprised, nervous & excited to find out we were pregnant. The Dr sent us for a scan even though she thought we were only about 8 weeks. Next came the words that took us by complete surprise and began the journey of our lives..

“They are both looking well”, we were expecting identical twin boys. We were thrilled.

However, things took a turn and the 29 week scan showed we had twin to twin transfusion and we were told to go straight to the Royal Women’s Hospital Emergency Department where they would be waiting for us.

We arrived at the RWH ED to be assessed pretty much straight away. They did a few more scans and spoke about a lot of things we didn’t understand. A nurse jabbed my leg with steroids “Did you want to call any family?” Dave and I looked at each other in complete shock…. What was happening to our babies?.

I had an emergency caesarian pretty much straight away, they sent a Dr in to tell us that they had severe stage 4 twin to twin transfusion – stage 5 was death in-utero, so they weren’t in good shape. They noticed one of the heart beats was very slow and that he would be lucky to make it, the other twin wasn’t too good either and we needed to get these babies out now.

Our boys were born, Lachie (1.5kg), the bigger, stronger of the two and Coby (730gm), the smallest and sickest. Dave took me up to see the boys first thing the next morning, I was definitely not prepared for what I was to see. Here were these two tiny babies, Coby, resembling a skinned rabbit, he was puffy and bruised looking and had tubes and monitors everywhere, Lachie at least resembled a baby but was still tiny, he looked like a small version of a very old man. They were both very unwell.

After a little more than two and a half months, Lachie went into respiratory distress and never recovered. His little body gave up and he left us to become an angel, my heart is broken. This was the most devastating time of our lives.

However we still had Coby needing our love and support. I don’t know how, but we had to find it in us to stay strong for Coby. It took Coby another 4 months at the RWH and a further month at the RCH before he was big enough and strong

1300 mypremmie/1300 697 736 736

enough to eventually come home, oxygen and feeding tube included.

He was at long last home with us… I had spent 8 months and 15 days, every day, at the Royal Women’s Hospital or the Royal Children’s Hospital.

It was through LLT’s newsletters & morning teas at the RWH that I first heard of them and eventually got up enough courage to attend one. Although introducing myself and giving a brief rundown of our situation meant I had to admit to myself this was really happening, it was one of the best things I had ever done.

It was there that I met people who had been through the journey, these people truly understood what the NICU and all that comes with it was like. When it came time to go home LLT really helped us out again. Still do today!

Our little boy is now almost 4.5 years old.

He came off his oxygen just after his 2nd birthday and we were finally able to take his feeding tube out a few weeks later!!. I can’t even begin to tell you what a relief it is to see him finally being able to breath and eat without any help at all.

Early intervention has always been a part of our lives. First it was Jane, the beautiful physio at the RWH, then once home and settled we were introduced to Scope Early Intervention Services, and the long hard road that is transition from tube to oral feeding. Given the rough start he had, how long he was in hospital for and how sick he was, he missed many of the normal milestones.

Still today, we have regular early intervention to help with many aspects of Cobys development, these days, mainly focusing on things to help get him ready for kinder next year – we have just completed full developmental assessments to ensure that the areas he needs help in most become our main focus.

While there are some significant delays in areas, I am sure that without the services and help we receive, he would not be where he is today and his delays would be much more significant than they are.

There is a lot to be said for early detection and in turn, early intervention when a Childs development is at risk. Never be afraid to ask your pediatrician to assess your child or recommend a service you can attend if you feel things are not quite right or baby is not reaching his/her milestones consistently.

Renae,

mum to Coby 4.5 years and Lexie 3yrs

He needed help with not only learning, but in essence catching up with his age in simple things like how to get to sitting from crawling and lying position, to help with clapping, crawling, walking, reaching, grasping, you name it..

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

Camberwell’s Anna Hutchins steps out to help Little Treasures Keen local runner Anna Hutchins joined the thousands taking part in the Walk for Prems held at Albert Park Lake to raise awareness and funds for premature and sick babies, taking out a well deserved first place in the 10km fun run category.

Premature birth is a cause that’s close to Anna’s heart - Anna was born via emergency c-section at 35 weeks, five weeks before her due date when her mum (Denise) suffered toxemia. She spent three weeks in Special Care.

Anna is now 28 yrs and a qualified mechanic working as a Service Adviser for Garry Warren Smith Honda Service. The Walk for Prems was her first ever fun run and she was not expecting to come in as the first woman of the 10km. She was truly surprised.

She took part in the WFP 10km run while her boyfriend, Dad, brother with her two nieces did the 5km walk. Denise (her mother) provided the picnic!

Walk for Prems 2012

Thanks to Anna for sharing her story with us

W

alk for Prems 2012. Wow what a big day it was! The weather gods were kind to us throughout Australia with over 3000 people taking part in the event creating an amazing sea of orange!! The event is getting bigger and better each year as it grows – we can’t wait to see what 2013 has to hold for us.

The fundraising efforts have also been tremendous. With everyone’s help, we have broken our fundraising target of $150,000 and raised $174,000.

This is such a fantastic result – we are absolutely thrilled and delighted!!.

A big thank you to all the families across Australia who couldn’t walk but raised funds in many other ways, such as BBQs, raffles, gold coin days, morning teas and company donations.

Anna as a three week old (still two weeks before her due date)

With this money, we will be able to reach more of the 45,000 families who have a baby in Neonatal Intensive Care and Special Care Nurseries.

Alongside our current support services we will also be able to provide these families, free of charge with our hospital folder, ‘A Guiding Hand to NICU & Special Care’. Thank you for making it possible for families in need to receive one.

Walk for Prems wouldn’t have been such a success and memorable day without all the people and organisations that were involved in making it happen. Although there are many to thank, I would like to say a special thank you to all our wonderful volunteers – you are the foundations of LLTF, our ambassadors and supporters – Brooke Hanson, Clare Bowditch, Brodie Holland and Leigh Harding and our wonderful corporate sponsors - Medela, Earlybirds, Kidspot, Living Textiles, Evans and Peck, PAMS and Michael Kouril Pty Ltd, without whom this day would not have been possible. Thanks has to go also to all the many other companies who helped us out on the day.

Anna with her winning medal on 28th October at Walk for Prems.

We can’t wait to see what 2013 has to hold for us. We look forward to seeing you all then.

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

lifeslittletreasures.org.au

1300 mypremmie/1300 697 736 736

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

Proactive Prem Parenting

Diary Dates

ReadyStepGrow™ - Proactive Pathways for Prems is an innovative & unique Melbourne based organisation that provides services, evidence-based knowledge, assessment, counselling and programs to enhance the development of premature and previously sick babies.

The groups will be closed over the holiday period from the end of December to the end of February, while all the volunteers have a very well earned break.

The founding members of the ReadyStepGrow™ team are: Dr Carol Newnham Neuropsychologist, Editor of the magazine Premipress Senior Researcher Fiona Tyrrell Education Consultant Student Well-Being Counsellor Simone Mossop Neonatal Intensive Care Nurse Special Needs Education Consultant This warm and enthusiastic team are dedicated to optimising learning and development opportunities for prems and are proud to present a series of FREE education sessions relating to Proactive Prem Parenting. It is a fantastic opportunity to meet leaders in their field and hear what they have to say.

Education Sessions during 2012/2013 will be focussing on the following areas: • Optimizing development in preterm babies and children • School Readiness and Transition • Attachment • Brain Development 2013 sessions will cover topics below: (dates to be advised)

Attachment John Bowlby was the 5th of 6 children, born into a wealthy English medical family. The nanny who had been employed at his birth left when John was 4. He still had his mother of course; the children all met with her from 4-5 every afternoon. Yet, to all intents and purposes, John had lost his “mother”, his “attachment figure”.

He was a compliant child who did well at school (probably a boarding school), became a doctor, then a psychiatrist and finally a psychotherapist. At that stage he asked “What is wrong with me?”

John Bowlby went on to develop and test one of the most powerful and important theories in psychology – “Attachment Theory”.

The bond that develops between a caregiver and baby/child from birth is the most important determinant of all other areas of development, especially emotional development, which is the basis for happiness. Premature babies have a difficult time during the weeks and months after birth, including separation from their parents.

This session will describe the psychology of a prematurely-born baby and how parents can help their child develop attachment bonds during the hospital period and after discharge.

They will be hosting a series of developmental playgroups during 2013, a wonderful opportunity for families, details are:

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

TASMANIA

Royal Women’s Hospital

Date: February 14th – March 21st

Chadstone/Malvern

Afternoon Group

Details: 6 week program |2 hours per week • Morning group [0 – 2+ years]

Dates: 2nd Friday of the month Time: 10am – 11.30am Venue: Phoenix Park Neighborhood House Address: 22 Rob Roy Road, East Malvern VIC 3145

North West Coast Support Group

2013 Groups

Time: 9.30 – 11.30 • Afternoon group [3 – 5+ years] Time: 1.00 – 3.00 Price: program price $320 medicare rebates may apply Venue: Camberwell library, 345 Camberwell Road, Camberwell, VIC 3124 To for further information or to book a spot go to the contact form on the website www.readystepgrow.com.au

Dates: 2nd Wed of the month Time: 10am - 12pm Venue: Koolyahgarra, 7 Church Street, Bayswater.

(Melway 64 E3, 5 mins walk from Bayswater station.)

Co-ordinator: Karin

Sunningdale

Brain Development

Dates: 1st Friday of the month Time: 2.30pm – 4pm Venue: Sunbury Maternal Child Health Centre Address: 511 Elizabeth Drive, Sunbury (Melway 382 A3, off Gap Road) Co-ordinator: Maternal & Child Health Nurse – Rebecca Long Cost: Free

The human brain is designed to adapt to the environment it finds itself in. It is amazingly “plastic”. This is wonderful news for the parents of premature babies, because the environment they provide for their child, especially in the first 3 years of life, will literally sculpt the architecture of their child’s brain.

Traralgon

This session will involve a “Brain 101” lesson. Parents provide the environment that will make (or break) the connections between neurons, called synapses.

Yet piling more and more experiences onto a child is not necessarily the best way to increase brain connectivity. The environment needs to be tailored to the child’s current developmental level and current abilities. In addition, a securelyattached child (see previous session) will learn better (make more synapses) than a child who is not.

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

Maroondah / Knox

When: Last Friday of the Month (except school holidays) Time: 10am – 12pm Venue: Good Start Early Learning Centre, 1 Conway Court Traralgon (Corner Park Lane and Conway Court) Parking at rear of centre off Conway Court and Park Lane Co-ordinator: Rachael Centre Phone: 51760440 Cost: Free

lifeslittletreasures.org.au

1300 mypremmie/1300 697 736 736

Day: First Wednesday of every month (except school holidays/Public Holidays) Time: 3.30pm – 4.30pm Venue: 4th floor (NICU) Parents Retreat Room Co-ordinator: Alex & Meaghan

Day: 1st Monday of every month Time: 10.00am Venue: Burnie Community House Address: 24 Wiseman Street, Burnie, 7320 Co-ordinator: Amanda Cost: Free

Evening Group

Meetings are held in the second house, on the right hand side as you enter the main gate.

Launceston Support Group Day: 3rd Wednesday of every month Time: 10.00am Time: Child and Family Centre, Ravenswood Address: Prossers Forest Road, Ravenswood Co-ordinator: Jenna Cost: Free

Day: Last Wednesday of every month (except school holidays/Public Holidays) Time: 6.00 – 7.00pm Venue: 4th floor (NICU) – Parents Retreat Room .

Co-ordinator: Alex & Meaghan

✳ CHRISTMAS Morning Tea at Royal Women’s Hospital

Circular Head Group Day: 2nd Tuesday of every month Time: 10.30am Time: Wyndarra Community and Resource Centre Address: 43 Smith Street, Smithton, Tas 7330 Co-ordinator: Shelley Cost: Free Hospitals 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.

✳

Date: 12th December Time: 11am-12.30pm Venue: 4th Floor Reception Area ✳ Past prem families and siblings are more than welcome to come back and help our Little Treasures decorate the tree. Morning tea will be provided ✳

CHRISTMAS Morning Tea at Monash Hospital, Clayton

Date: 21st December Time: 11am-12.30pm Venue: TBA, so keep an eye out on our Facebook page or email for details.

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✳ Past prem families and siblings are more than welcome to come back and help our Little Treasures decorate the tree. Morning tea will be provided ✳

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

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

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 our website at: www.lifeslittletreasures.org.au/ get-involved/volunteering

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

lifeslittletreasures.org.au