Grace Centre for Newborn Intensive Care at The Children's Hospital at Westmead
Ph: (02) 9845 2715
Fax: (02) 9845 2251
The Grace Centre for Newborn Intensive Care is a unique unit where a team of experienced and specifically trained doctors, nurses and allied health professionals care for babies - some less than one month old (neonate) - with complex medical conditions, serious cardiac, or surgical disorders.
The Grace Centre is not a maternity ward but a specialised unit providing dedicated treatment for premature newborns and critically-ill infants.
When a baby is transferred to Grace … it is literally the difference between life and death.
The Centre comprises specialised intensive neonatal care and high dependency units that deliver unique care tailored to the medical or surgical needs of the state’s sickest infants – some as young as 23 weeks gestation.
Some of the country’s most influential healthcare professionals work in the Grace Centre. Here these highly skilled doctors, together with qualified and expertly skilled nurses and allied health professionals, treat and care for more than 600 fragile babies each year.
Some babies are flown to the nursery within hours of birth for urgent life-saving care not available anywhere else in the state. These babies come from across New South Wales, the Australian Capital Territory and the Pacific Rim for complex medical conditions, serious cardiac and surgical disorders or complex diagnostic testing.
With access to the best consultants and staff across many medical and surgical disciplines as well as sophisticated equipment and the application of ground breaking research, these babies and their families are in the best place for a positive start in life and future.
Our Care … Your Trust
Our relationship with a family starts from the moment their baby is transferred to the Grace Centre – even earlier for some when the need for the baby’s admission is detected during pregnancy.
A family’s trust is our inspiration.
Passionate about our responsibility, every member of the Grace team is committed to the Centre’s vision to “Work with families to achieve the best for their child”.
Mindful of supporting each baby’s development our expert teams actively work to strengthen the relationship between parents and baby – teaching and encouraging them to actively participate, as early as is possible, in their baby’s care.
Focussing too on the wellbeing of parents, we provide continuous counselling and support. Our lactation specialists work with mothers to help with breast feeding and expressing. Social Workers support families during anxious and emotional moments and help with strategies to balance and cope with life in this complex environment. Our infant follow-up and developmental clinics provide continuous support with occupational therapy, physiotherapy and speech therapy services long after a baby leaves our Centre.
Today, as we continue to save more babies, we have sharpened our focus on collaborative research – determined to further improve the quality of these little lives. Input from families is critical and our parent advisory council provides vital consumer advocacy within the Grace Centre.
Caring for critcally ill newborn babies
Every member of the Grace Centre is proud to maintain the Grace name.
Originally from the Grace Bros Staff Aid to Charities, it symbolises a strong connection with our community – caring hands extended from those committed to service. We are proud to uphold this connection with our history as we continue to deliver the very best of care, while pursuing innovation through multidisciplinary research.
We are delighted to enjoy an internationally recognised reputation for our expertise and excellence in neonatal care, however the real reward is the inspiration we receive from the trust that families bestow on us.
While we remain focussed on ensuring our babies go home as healthy as possible, today, we are equally committed to pursuing research that can guarantee the best chance of a bright future.
Today, our promise is to constantly strive to further our knowledge and challenge clinical and educational practices so that we can continuously improve our treatment and care of newborns.
The Grace Centre works collaboratively with all the neonatal intensive care units within NSW and the ACT accepting referrals from across this Perinatal Services Network. Its close location to Westmead Adult Hospital’s high risk birth unit enables women whose babies have been identified with birth defects, to be referred for delivery and early transfer to the Grace Centre.
When a baby is diagnosed before birth with a condition requiring an operation, we offer parents a tour of the intensive care unit to meet some of the staff. A card given during the tour offers a contact number to call which the expectant parents are welcome to call at any time.
While the neonatal period is defined as the first 28 days of life, the Grace Centre also cares for older babies, particularly those born prematurely, who may have serious health conditions.
There are two Units providing different levels of care within the Grace Centre:
- Neonatal Intensive Care Unit, (NICU) for the most seriously ill babies (we have nine ventilator beds);
- High-dependency Unit, (HDU) for babies who do not need to be in the NICU but still need complex care, close monitoring and observation (we have 13 high dependency beds)
All babies treated in our neonatal intensive care unit are critically ill and usually need one or more of the following treatments:
- A surgical operation
- Support for their breathing with a breathing machine due to prematurity, pneumonia, or surgery
- Diagnostic tests involving complex imaging with x-rays, ultrasounds, and other technological techniques
- Special studies of body chemistry and cell biology
Seriously ill neonates requiring intensive care are often ventilated, which means that a machine is helping them to breathe. These babies are monitored around the clock for any changes in their vital signs. Premature and critically ill babies are vulnerable and need extra monitoring for serious health problems.
We know that there are lots of monitors, leads and tubes and sometimes it is hard for parents to know how to help, but in Grace, parents play a vital role and are actively encouraged to assist in providing care.
The Newborn Individualised Developmental Care and Assessment Program (NIDCAP)
In the Grace Centre we are committed to providing care that acknowledges that every experience endured by a newborn baby, especially in the busy environment of a NICU, can have an impact on their growing brain and body. We have deliberately designed our model of care to be developmentally supportive by taking into account the potential long-term implications of these experiences, including delayed breast feeding, consistently absent mother figure, repeated painful stimuli and lack of circadian rhythms.
As the only provider of NIDCAP training in Australia, the Grace Centre is leading the way in neonatal developmental care. Currently we have several NIDCAP certified professionals who lead the developmental team in meeting the needs of sick and premature infants and their families. Regular rounds enable the families to discuss their baby’s development, behavioural cues and participate in goal-setting for their newborn within the family.
Parent's Guide to The Grace Centre for Newborn Care
Click here for a copy of the Parent's Guide to the Grace Centre.
When a baby is diagnosed before birth with a condition requiring an operation, we offer parents a tour of the intensive care unit to meet some of the staff. A card given during the tour offers a contact number to call which the expectant parents are welcome to call at any time.
Skin-to-skin contact – or Kangaroo Mother Care
A baby’s wellbeing can be greatly helped through skin-to-skin contact. In Grace, as soon as possible we help parents to hold their baby against bare skin. This is soothing for the baby, helps each baby’s development and sleep and has also been shown to reduce infections, encourage feeding and promote bonding.
It helps develop the relationship between the baby and parents.
Grace "graduates"... when it is time to go home
When a Grace "graduate" is ready to go home, we know it can be both a happy and stressful time for families. Going home is a joyful celebration of a new and exciting, sometimes challenging, chapter in the lives of babies we have come to know so well.
When discharge time comes, we work closely with our families to ensure that they are well prepared and can confidently and comfortably care for their baby at home. This includes careful instruction on how to use specialist equipment and, if required, how to prepare and give medications.
We’ve also developed a booklet called "Going Home" which helps parents get ready and serves as a resource when they get home. The information in "Going Home" is not specific to individual patient management but is intended to complement the advice provided by Grace staff.
The booklet contains lots of useful advice and suggestions and includes helpful tips, tools and things to remember. Things like:
- having your infant car seat fitted by a qualified professional before discharge day
- knowing that after leaving the busy environment of Grace, it may take some weeks to settle your baby into a good sleeping routine
- always washing your hands and making sure visitors do the same before holding the baby, and other ways to keep your baby safe and reduce the risk of infection
- how to sterilise bottles and make up your baby’s feed - whether expressing or bottle feeding
- avoiding large crowds for one to two months after discharge, especially during the cold/flu season
- techniques to prevent cot death, Sudden Infant Death Syndrome (SIDS)
- what to do if baby gets sick
There’s information and descriptions about feeding and settling, communication, play and development, a list of useful contacts, as well as some important advice about ‘self-care’ for parents, including:
- take it one day at a time and try to plan for periods of sleep and rest
- use exercise to relieve stress and tension; even walking helps
- eat a balanced diet. Limit junk food. Drink plenty of water
- don’t try and do too much, avoid doing non-essential household jobs
Grace Development Clinic
With the increasing complexity of conditions being treated in the Grace Centre combined with improving survival rates, a demand for follow-up support and community care has emerged. Although the average length of stay for a baby admitted to the Grace Centre is 12 days; ongoing care and support continues long after discharge. Of the 600 babies who receive intensive care in the Grace Centre each year, almost 400 will return for appointments at our Follow-up Clinic.
The Grace Development Clinic is a specialist clinic – available by referral only – for babies after they graduate from the Grace Centre. Babies referred to the Grace Development Clinic include those who have significant neurological problems eg from seizures, meningitis, lack of oxygen to the brain, bleeding into the brain (haemorrhage), or who have cardiac disorders, have undergone surgery, have severe breathing abnormalities, or have metabolic disorders that may cause a risk to their development.
Because these babies have complex medical conditions, a developmental program is started during admission and the specialist team involved in our Follow-up Clinic will make arrangements for continued support after discharge. After discharge infants are seen at three months corrected age, one year and three years, with appointments in between as necessary.
The Grace Development Clinic focuses on neuro-developmental assessments, early detection and referral to early intervention, and ongoing support designed to help these babies reach their developmental potential.
At three months of age, the occupational therapist and physiotherapist administer a General Movements (video) Assessment, and a Bayley Assessment, in conjunction with the medical examination. At 12 months and three years, another Bayley Assessment and medical examination is performed by the team and infants can be referred for a speech therapy assessment if necessary.
The care program tailored for each child provides significant tools that benefit the family and infant.
For families who don’t live locally, our specialist team will make contact with the baby’s local NICU, GP and/or paediatrician and will link the family with community health services including Occupational Therapy, Physiotherapy, Speech Therapy, Early Intervention programs or other diagnostic services closer to home. The developmental program devised is continuously refined in line with progress until the child reaches the age of three. At this time, as appropriate, the child can be linked to more age-specific developmental programs, if not done so already.
Although not all babies admitted to Grace Centre require referral to the Grace Development Clinic, if the assessments conducted by our specialist team indicate a need for developmental intervention, the team will link families into early intervention services before the infant is discharged from hospital.
It is important that all babies are supported to reach their developmental potential.
 The Bayley Scales of Infant Development (BSID) are used to describe the current developmental functioning of infants and to assist in diagnosis and treatment planning for infants with developmental delays or disabilities. The test is intended to measure a child's level of development in three domains: cognitive, motor, and language.
Collaborating in care
The Grace Centre shares a close working relationship with all specialty departments in the Hospital and Network. The Grace Centre has and will continue to collaborate and consult with every team across the Network to ensure the very best of care is provided to these precious infants.
For example, collaboration with our colleagues in the other intensive care unit (Paediatric Intensive Care Unit) and the Heart Centre for Children is critical especially when treating babies with cardiac conditions who often during their admission need the joint care and expertise of all these specialities.
Our relationship with the surgical team is vital and has dramatically improved patient survival and enhanced the long-term developmental outcomes of critically ill neonates.
Our relationship with other departments has led to collaborative neonatal research that has improved, and continues to enhance, clinical practices in the neonatal intensive care environment. Some examples of such collaborations include:
- DAISy (Development After Infant Surgery) – a world-first study involving more than 780 babies and their families, surgeons and other healthcare professionals that proved that children who undergo any type of major surgery are at risk of developmental problems at one year of age. Recommendations have lead to enrolment of all high risk infants in multi-disciplinary clinics, early identification of issues and initiation of early intervention strategies. We are continuing to assess these children, now at 8-9 years which will provide essential information on development and educational skills to our current parents.
- Working with respiratory specialists to look at why some babies stop or have difficulty breathing and the impact this has on development of their nervous system.
- Partnering with our colleagues in the Heart Centre as well as other facilities in NSW, Queensland and Western Australia to help understand whether delayed cord-clamping in pre-term babies (of less than 30 weeks gestation), affects blood circulation.
We are proud of our internal and external collaborative partnerships, including those with the Australian and New Zealand Neonatal Network, as well as those with our famlies and the wider community. The commitment to these partnerships and the dedication to success ensured by these associations adds strength to the promise of brighter futures for critically ill babies.
You can learn more about our successful collaborations at our neonatal research group (hyperlink) section.
Training and Education
The Leadership team in the Grace Centre is committed to maintaining the Centre’s international reputation for providing leading edge training to doctors from medical facilities around the world as well as nurses and allied health professionals passionate about pursuing this vital field of clinical care.
We are a ‘NIDCAP training centre in development’ and in 2018 will establish our own NIDCAP training program inviting applications from health professionals across Australia.
Find out more about the Grace Centre’s training and education program.
Neonatal Intensive Care RESEARCH
We are proud of our achievements in recent years that have seen the survival rate of babies in the Grace Centre increased to over 97 per cent. However, we are aware that not enough is known about the long term effects of serious illness, congenital heart disease and complex surgical interventions on these young lives.
The Grace Research Unit is a lead academic and clinical neonatal research unit with a commitment to multi-disciplinary research. The Centre successfully supports a Nursing clinical research program, Medical honours students, Registrar/Fellow college projects and Masters and PhD researchers.
Our researchers collaborate with colleagues in multiple departments within the Sydney Children’s Hospitals Network, nationally and internationally and present at national and international conferences.
As a centre of excellence for neonatal research, we are committed to research that will further our knowledge and challenge clinical and educational practices to improve the way we treat and care for newborns.
With the ultimate aim of ensuring that babies go home as healthy as possible and with the best chance of a bright future, members of the Grace Research Unit are actively engaged with:
- Cerebral Palsy Research Institute (Chair)
- International Multidisciplinary Prevention and Cure Team for Cerebral Palsy (IMPACT for CP) Steering Committee
- Newborn and paediatric Emergency Transport Service (NETS) Research Committee
- Postgraduate Research Students’ Conference Organising Committee
- SCHN Research Advisory Committee
- Scientific Advisory Committee
- Early Career Researchers Committee
The Cerebral Palsy Research Institute has recently joined the Grace Centre Research Unit as part of the Discipline of Paediatrics and Child Health at the University of Sydney – further building our capacity to improve the lives of young babies and their families.
Examples of our ongoing or recently completed research include collaborating with the:
- Heart Centre for Children and A/Prof Nadine Kasparian in the development a psychological support program tailored to the needs of families dealing with a fetal or postnatal diagnosis and the subsequent care and development of a child affected by congenital heart disease (CHERISH study);
- Royal Children’s Hospital and Prof Rod Hunt who is leading the Newborn Electroencephalography and Seizures Trial (NEST) designed to assess the value of treating subclinical seizures in babies.
For information about the publications, presentations, ongoing studies, student projects, grants and awards involving our researchers see the Grace Research Unit's 2015 Research Report.
Video orientation for parents
Video on fundraising support
Staff - The Grace Team
Caring comes naturally
The Leadership Team in the Grace Centre for Newborn Intensive Care take their responsibility for the effective management and delivery of quality care and support in this critical care environment very seriously. In Grace, a unique trinity of co-Heads:
- Prof Nadia Badawi, AM – Neonatologist and Medical Director of Grace, and Chair of Cerebral Palsy Alliance
- Dr Robert Halliday – Neonatologist
- Ms Angela Casey - Nurse Manager (maternity leave)
- Ms Samantha Mihailovich – Acting Nurse Manager
work together to lead a passionate, experienced and highly skilled multidisciplinary team – all focussed on their mission – to “Work with families to achieve the best for their child”.
Acknowledging the benefits of collaborative care in this complex environment, they continuously inspire innovative thinking, research, and engagement with families to ensure patients always receive the very best chance for a bright future.
Our staff are committed to providing the highest quality of treatment, care and support for babies in Grace as well as their families. This team of highly skilled professionals - many of whom also hold academic positions and titles - include:
Our Neonatologists are passionate and devoted paediatricians who are dedicated to saving the lives of critically ill newborns. These highly skilled doctors co-ordinate care and medically manage many babies who are critically ill, born with birth defects, born prematurely, or in need of urgent surgery. Medical problems in premature and newborn babies can create special challenges when important organs such as the heart, lungs, stomach and skin are not developed adequately to function without special help. Neonatologists have the special training needed to evaluate and treat these medical problems. Some of the nation’s leading neonatologists work in the Grace Centre and as leaders in their field they are actively involved in teaching junior medical staff (Fellows and Registrars) and imparting their knowledge to research programs. Their dedication and passion drives our team to constantly push boundaries to ensure healthy and positive futures for these tiny infants.
Our Researchers are represented from across all professional disciplines and bring together a broad range of expert knowledge, experience and care in this complex environment. Complementing the roles they perform in their individual specialties, these determined researchers are focused on constantly improving models of care to ensure quality of life for infants and their families.
Our Nurses are specifically trained and experts in caring for neonates and premature babies with complex needs. They are highly skilled in interpreting the silent signals and gestures of these critically ill infants and expertly guide parents in how to care for their baby. They formulate nursing care plans then implement and evaluate the effectiveness of treatment. They administer medications, perform complex procedures, work with sophisticated technology, and consult with a multidisciplinary healthcare team to co-ordinate all aspects of the baby’s care. Often the first point of comfort for infants in their care, our nurses also understand the fears and anxieties experienced by parents and provide emotional support and reassurance.
- Allied Health professionals provide an essential service to our patients and their parents. Our Physiotherapists help with handling and positioning advice, respiratory care and assessment of musculoskeletal, neuromuscular or genetic conditions. Premature babies often face challenges in feeding and gaining weight so our Speech Therapists work closely with babies to develop pleasurable experiences around feeding and provide stimulus that helps them learn to feed. Our Occupational Therapists (OTs) help each baby to bond, explore their environment and engage in care activities such as a nappy change. They also teach parents how to help their baby be comfortable and support his or her development and when parents can’t be with their baby, will keep them updated on progress. Our Allied Health team continue to provide care and support at Follow-up Clinics after discharge.
- Our Lactation Specialists are specially certified nurses who work individually with each mother to help with all aspects of feeding, including using a breast pump and solving breastfeeding or pumping problems. If a baby is not ready to feed from the breast or bottle our lactation specialists will explain techniques available to help feed each baby. This can include fluids and a nutrition mixture through a drip, or a tube (gastric) that carries milk into the baby’s stomach. Lactation specialists advise, guide and help with breast feeding and expressing and provide every support to help a mother successfully breastfeed while in hospital and continue when discharged home.
- Our Social Workers in the Grace Centre are expertly trained and highly experienced in assisting families who find themselves confronted with a baby in an intensive care environment. Focused on supporting the emotional wellbeing of each parent, social workers can help with antenatal support, assisting with baby’s medical needs, family relationship concerns and accessing support services in the community. These very special members of the team advocate for families and sadly, at times are there to provide grief and bereavement support to families – helping them through the heartache associated with the death of their newborn.
- Our Administrative Support officers work tirelessly to ensure that the clinical care provided to patients happens seamlessly and efficiently. Priority attention is given to organising patient admissions – including co-ordinating parent accommodation and organising visitor access – arranging patient transfers or discharge as well as follow-up appointments. The Administrative team help keep the Grace Centre functioning smoothly and assist clinical teams with filing to medical records, helping with pathology and pharmacy collections as well as ensuring the ward is stocked with adequate quantities of equipment and supplies.
Our team comprises more than one hundred and forty staff – every one of them committed to ensuring the very best of care is available for up to 22 babies in the unit at any one time. Medical and nursing staff are always rostered on the unit ensuring expert care is available every day. Other members of the team include:
- 3 x Clinical Fellows
- 5 x Clinical Registrars
- Amy Barker, Transitional Nurse Practitioner
- Dr Peter Barr OAM, Emeritus Neonatologist
- Catherine Brown, Nurse Unit Brown (NUM)
- Dr Kathryn Browning Carmo, Neonatologist
- Emma Carey, Nurse Unit Manager (NUM)
- Susan Clarke, Social Worker
- Kerry Everson, Secretary
- Natalie Fairbairn, Occupational Therapist and Research Officer
- Nadine Griffiths, Nurse Educator
- Emre Ihlan, Research Assistant
- Kristen James, Transitional Nurse Practitioner
- Michelle Juarez, Physiotherapist
- Caroline Karskens, Audit Officer
- Gabrielle Kerslake, Lactation Consultant
- Dr Alison Loughran-Fowlds, Neonatologist
- Bhavesh Mehta, Fellow
- Helen Mercieca, Lactation Consultant
- Bronwyn Parkinson, Nurse Unit Manager (NUM)
- Himanshu Popat, Staff Specialist
- Professor Kaye Spence AM, Clinical Nurse Consultant
- Jan Stewart, Research Nurse
- Dr Amit Trivedi, Neonatologist
- Associate Professor Karen Walker, Research Fellow
Supporters and Advocates
The commitment and dedication of our Supporters and Advocates is very much appreciated.
These amazingly generous and enterprising people – all of whom we proudly call friends – don’t seek accolades or public acknowledgement, but to us they deserve the deepest appreciation and our heartfelt gratitude. We welcome this opportunity to publicly recognise their contributions and share their remarkable generosity of spirit.
Grace Gala Committee
Inspiring new donors and raising awareness and much-needed funds, the Grace Gala is our glamorous signature fundraising event.
Since our inaugural event in 2008 the Grace Gala has raised in excess of $6 million which has helped us buy new medical equipment and added strength to our research program.
Each year this sell-out black tie event goes from strength to strength – a wonderful testament to the dedication, passion and tireless commitment of our wonderful organising committee. Combine this with amazing generosity and support of our sponsors, corporate partners, individual donors, and families and the results speak for themselves.
It is our honour to congratulate this unique and amazing group of women who make up the Grace Gala Committee and acknowledge their passion and selfless efforts. They are all busy and expert at juggling and, unsurprisingly, play down the immense contribution they personally make to the life-saving work of the Grace Centre.
We asked these wonderful women, all of whom never hesitate to help and are always willing to go that extra mile to share a little about what inspired them to get involved and what today motivates each of them to continue to help us provide the very best neonatal intensive care.
Pepper’s inspiration to support Grace was ignited 11 years ago by her daughter’s unexpected admission.
"A bed shortage at the time meant an agonizing wait of several days before transfer, which was extremely tough. It was obvious that there was a need for more beds and for the many resources needed to ensure the survival of these precious little lives. I immediately resolved to do whatever I could to help."
As an inaugural Grace Gala Committee member Pepper is still as passionately committed as she was 11 years ago and remains dedicated to ensuring the Gala’s success. Pepper says she only plays a "very tiny part" – but we know better.
Pepper says the responsibility is both rewarding and pleasurable.
"We have lots of fun and have celebrated some amazing accomplishments. We work hard to create an exceptional experience each year and are delighted that our committed and loyal guests keep coming back.
"Although not actually saving the babies, we are extremely proud of the role we play in creating a unique and engaging event where everyone can make a special contribution."
Pepper’s personal message for families in Grace is … "You’re in the best possible place where the highly skilled people caring for your baby are the best of the best."
Lisa’s inspiration to support the Grace Centre is her precious little boy who needed intensive care during the first few months of his life.
Lisa says that being part of the Grace Gala Committee each year she sees first hand how vital equipment and expanded research is delivering improvements in care and better outcomes for babies and their families, now and into the future.
"Being involved with the Gala, listening to families share their very personal stories is truly inspiring."
Lisa’s personal message for families in Grace is …. "Enjoy every cuddle and moment with your precious baby. This may not have been the start you planned for you and your baby, but know you are in great hands at Grace. Take good care of yourself and ask every question you need to – the team is here to help and support you too."
Angela had heard about the Grace Centre at The Children’s Hospital at Westmead but it wasn’t until her daughter Amelia arrived in 2007 that her awareness of the skill and dedication of the Grace team was truly appreciated.
"During my pregnancy I was told that when our baby was due, immediate transfer to an intensive care ward would be needed. This news was both alarming and unsettling. When our beautiful Amelia arrived and was urgently transferred to Grace, the reassurance provided by the wonderful team caring for her meant so much. Knowing Amelia was now in the best hands immediately helped us relax."
Today Angela remains a passionate and loyal supporter of the Grace Centre. She generously donates her time and actively participates as a Grace Gala Committee member. Her selfless and dedicated advocacy is greatly admired and respected.
"It is my absolute delight and pleasure to work with this amazing and inspirational group of women, united and driven by personal experience. We know first-hand the life-saving work provided by the Grace Centre and are determined to ensure that other families with critically ill newborns can continue to access this highly specialised care".
Angela’s personal message for families in Grace is… "It is perfectly natural to feel scared and unsure but know that you are in a wonderful place with the most knowledgeable experts caring for your precious bundle. The passion and determination of this team shines through everything they do to help you and your baby."
Mothers with daughters at the same school Megan is a close friend of Nadia Badawi and initially accepted an invitation to attend the Grace Gala. Seeing the wonderful work being achieved Megan says she felt duty bound to help fundraise for the purchase of life saving equipment.
"I have the utmost admiration for the work that Nadia achieves and does on a day to day basis. My small contribution is a way to help the most vulnerable of our community.
"I enjoy the camaraderie amongst the Grace Gala Committee members. We share a common goal to make Grace a leader in newborn intensive care with state-of-the-art equipment and treatment modalities. It is an absolute pleasure and privilege to serve on the committee and it is a position I hold with the utmost of pride."
Megan’s personal message for families in Grace is …. "Regardless of how desperate things may seem, you can rest assured that each and every staff member will treat your precious baby as if they were a member of their own family. They are treated with dignity and the best of medical care."
The Grace family, particularly Megan’s late husband’s mother, Mrs B.A. Grace, are long-time supporters of the Grace Centre. When her husband died, Megan was inspired to continue the support that had meant so much to him. Megan and her son toured Grace and saw first hand the wonderful work being done.
"It is comforting to know that a medical facility like Grace offers such amazing care. The staff work tirelessly and selflessly to help all families with a baby needing urgent medical care. Dr Nadia Badawi is dedicated, inspiring and very impressive."
As a Grace Gala Committee member Megan says "It is a privilege to work with such a wonderful group of people all dedicated to helping raise money for Grace and for vital research. I’m happy I can help in a very small way."
Megan’s personal message for families in Grace is …. "Know that the incredibly caring and dedicated staff want to make the experience as easy as possible for you. It’s a difficult time for any family with a baby needing urgent medical care, please take comfort in knowing that you are receiving the best care possible."
Fiona was approached by Rob White CEO of Cerebral Palsy Alliance to support the Grace Centre for Newborn Intensive Care in 2014. "It was a privilege to be invited to become a Grace Gala Committee member and also contribute to work focussed on finding a cure for cerebral palsy.
In addition to the extraordinary leadership of Nadia Badawi, Fiona says her fellow committee members are a constant source of inspiration. "They have experienced first hand the heart wrenching loss of a baby or have faced the challenges of caring for a very ill baby and it is my privilege to support them."
Fiona is adamant that every child deserves the right to live a healthy and happy life and she is proud to support a committee passionate about making a difference to children and their families. "Profoundly vulnerable families from across Sydney, rural and regional Australia rely on support from the broader community to receive vital paediatric health services, and it is my honour to help make a difference. Guests at the Grace Gala understand and appreciate that the need for this vital support is paramount and the way they give with such warmth and sincerity is truly inspiring."
Fiona’s personal message for families is…"Know that you and your baby are cared for deeply and can feel safe and secure in this unique environment where every baby receives outstanding care. The professional support provided is magnificent and level of skill exceptional. Everyone is constantly focussed on delivering the very best of care.
When Alicia’s son was born she didn’t want another family to endure the same heartache and was determined to make a difference. Today she attributes her inspiration to devote her tireless energy to supporting the Grace Centre to Lachlan and the care he received 14 years ago.
"While in Grace with Lachlan, what really struck me then was the wonderfully caring staff. Today I’m still thankful for their hard work and dedication and I continue to be impressed by this and their ground breaking research and the difference it makes."
"I feel very blessed that our family and Lachlan were cared for in Grace. At the time I remember noticing plaques on donated equipment and wondering who was supporting Grace. Now I feel privileged to have joined their ranks."
Alicia says it is an honour to be part of the Grace Gala Committee and seeing the Gala become a remarkable fundraising event – a truly memorable night – is a great joy.
"When we started 10 years ago we were quite shy and worried about approaching people but now I am awestruck by how generous people are. At the end of the day, it’s all about the babies and their families. We want to provide the best medical equipment and research and if that means another step in the right direction, then that’s a great result."
Dr Badawi commends Alicia’s tireless work with staff in Grace and other Children’s Hospitals helping find the best ways to care for babies with congenital diaphragmatic hernia. "Thanks to this collaboration, and state-of-the-art medical equipment, survival following this serious condition has improved from around 50% to 90%; a remarkable achievement," Nadia said.
Alicia’s message for families who find themselves in Grace is…. "Don’t be too hard on yourself and give yourself a pat on the back for all the good things you have done. You are going through a very traumatic experience; there is no right way so just find your way of handling things. Take breaks when you can, do some exercise if you can and be kind to each other. There are not many people in this world who ‘get’ what you are going through but the staff at Grace do. Ask lots of questions, no question is silly, and remember that the Grace staff are there to help."
Grace Centre for Newborn Care Parent Advisory Council
Established in 2005, the Grace Centre for Newborn Care Parent Advisory Council offers a voice and advocacy role for families of babies treated on the unit. Recognising the important role that families play in our family-centred approach to care, membership to the Council offers them an opportunity to provide input, feedback and suggestions about existing policies, procedures and practices as well as views about new initiatives being considered for implementation in the unit.
Grace Centre staff or current members of the Council identify prospective members who undertake a recruitment process that addresses respect for diversity and differing opinions and the importance of confidentiality.
Membership is offered for a minimum of 12 months, although many representatives choose to continue on the Council for longer periods. New members serve a three month probationary period prior to membership being reviewed by the Council.
Members assist with the development of information and educational resources and can also volunteer to support our Grace Gala Ball including participation on the Gala Committee and helping raise awareness and support from corporate supporters.
Although communication is generally by email, the Council meets face-to-face quarterly, setting annual goals early in the calendar year, with extraordinary meetings conducted if required.
For more information about the Parent Advisory Council see the Terms of Reference and contact Caroline Karskens on (02) 98452712.
Our patient stories
We are delighted to share the stories of our patients whose parents have been inspired to say thank you - in their own unique way expressing gratitude and appreciation.
Brand new and really well looked after!
"Levi is living proof of the power of love, hope and sheer determination." Luanne
Today, the anticipation of teaching his son Levi to ride a Pee Wee 50 – when he is much bigger and stronger – is no longer just a whimsical wish, secretly held by a first-time father-to-be.
At just 18 weeks pregnant, Levi Thompson’s parents, Luanne and Nick, made a decision that their little boy would be given every possible chance of life. Diagnosed with a complex diaphragmatic hernia with just a heartbeat of a chance of surviving, Levi is living proof of the power of love, hope and sheer determination. (A diaphragmatic hernia meant that as his diaphragm had not formed properly, his liver, spleen, stomach, large and small bowel had all moved into his chest and his lungs were therefore underdeveloped.)
"It was a very difficult pregnancy and emotionally really hard Luanne explains.
"We decided to name Levi, decorate his nursery, stay extremely positive during the pregnancy and never ever give up. We knew there would be complications but we just wanted to give him every chance.
"We wanted to be prepared and well informed, so we toured the Grace Centre and met the team that would, we hoped, get to care for Levi after his delivery. We watched the Grace video and were enormously encouraged to hear of the high success rate of babies treated in Grace. Although it was a little upsetting seeing babies attached to highly complex equipment, the visit helped prepare us for what might be ahead," Luanne said.
Born at Westmead Hospital, Levi’s move to Grace was heart-wrenchingly delayed as it took two weeks for his breathing to stabilise to allow for safe transfer.
With only a small window of opportunity in which to perform vital life-saving surgery Luanne said her little miracle boy put up an incredible fight.
"He surprised everyone by breathing on his own for just long enough to get him moved to Grace," she said.
The 48 hours after Levi’s surgery were nail-bitingly stressful for his parents and his health care team, but in keeping with the reputation this little miracle man was starting to build for himself, Levi pulled through. He spent the next three months in the Grace Centre where Luanne says he was treated by the most amazing doctors and nurses.
"For every two steps forward, there were three steps back, but incredibly against the odds Levi kept surprising us, so we set another positive goal – this one to be home for Christmas," she said.
Although Nick had to return to work six weeks into Levi’s admission, Luanne can’t speak highly enough of how well-supported the staff made her feel. The excellent care continuously received during Levi’s four-and-a-half month admission to Grace she says was truly amazing.
"I was so appreciative of their expertise, compassion and empathy. The easily understood information shared regularly at ‘rounds’, the expert advice and guidance that was always provided so calmly and patiently – even when faced with making some really tough decisions – was amazing. I can’t praise them enough – they’re all miracle workers," Luanne said.
Miraculously, Levi was discharged in time to be home for Christmas.
"The Grace team worked tirelessly to help prepare us with the life skills necessary to confidently care for him at home. The discharge planning was wonderful and equipped us well to mange all Levi’s equipment, feeding tubes and medication needs and taught us essential resuscitation skills, just in case.
"We can’t repay the Grace Team for the care given to Levi but we had a little bit of fun with a Pee Wee 50 sticker that helped raise $2,800 for Grace. Our friends, family and colleagues bought the stickers and helped ‘spread the word’ far and wide via cars, boats, caravans (and a helicopter) – even as far as Germany – about the amazing work of the Grace Centre. The donation raised is a token of our appreciation and symbolises the bond our family will have with Grace forever," Luanne said.
Today they’re home and enjoying each others’ company. Despite a myriad of toys for him to play with, Levi seems to prefer just watching his mum – but as Luanne says … no prizes for guessing where he picked that up from!
Although Levi initially struggled with sleep, the introduction of high flow humidified oxygen has helped, and his lung development will continue to be followed up in the Surgical Lung Clinic at The Children’s Hospital. Levi will remain under the care of Dominic and the Respiratory Medicine team for some time yet. Luanne speaks glowingly of their expertise, guidance and care and their remarkable ability to predict Levi’s responses – ‘they know him all too well’ – and tailor the best treatment accordingly. Luanne has confidently continued to work through the difficulty Levi had transitioning from nasogastric tube feeding to oral feeds and, under the care of speech pathologist Jane, his feeding has improved – as has his weight gain – and will continue to improve with regular review at our Feeding Clinic. Levi was also born with moderate hip dysplasia and following the fitting of a special harness is showing improvement. He will require regular hip assessments to check on progress.
Like all Grace Graduates who have undergone major surgery, Levi will be enrolled in the Grace Developmental clinic. The multidisciplinary team in this clinic closely monitor and assess the development of our babies, providing advice and allowing the opportunity for referral to early intervention services should a need be identified.
Miracles happen behind those doors
"I want to raise awareness about how wonderful the Grace Centre is and tell everyone what a hidden gem is right here in our own backyard. I hope sharing my story can help." Eleni
The memory that Eleni and Mario Gerassis have of the amazing doctors, nurses and specialist staff who saved their daughter Dimitra, is as strong today as it was when she was born on Mother’s Day eight years ago.
Equally strong is their motivation to continually raise awareness of those unsung heroes who, despite it being their job, every day strive to save the lives of tiny babies … to keep families bonded forever.
"They are like family," Eleni explains. When you’re there all day, every day, Grace becomes your second home. The staff are amazing – every one of them is motivated, devoted and determined to do every thing for every baby," she said.
How do you acknowledge that commitment and repay them for your child’s life?
For Eleni and her husband Mario it was personal – a commitment made between parents and newborn. A promise to do what they could for the ‘friends’ who played such a vital role in giving them back their little Dimi, who today is so happy and healthy.
It’s only when you experience what goes on behind the doors that lead into Grace, Eleni said that you realise how many people don’t know about Grace or about the miraculous team that work there.
"When you’re pregnant you don’t expect to need a place like Grace but when you do, it isn’t long before you realise how special it is and you know it’s where you and your baby should be.
"I want to raise awareness about how wonderful the Grace Centre is and tell everyone what a hidden gem is right here in our own backyard. I hope sharing my story can help," she said.
At just 24 weeks pregnant with her second child, Eleni knew something was wrong. After extensive tests and consultations an initial diagnosis of CCAM – a rare abnormality of lung development – predicted a 10% chance of survival for their unborn baby. For Eleni and Mario it was a chance worth taking.
Eleni became as unwell as her unborn baby and needed complete bed rest. She spent much of a painful pregnancy in RPA in a constant state of labour while drugs helped prolong the pregnancy giving the baby as much time to grow before delivery. During that time both mother and unborn baby required special surgeries to drain extremely large volumes of fluid from their bodies. For baby Dimitra this was done in utero and involved placing a special shunt (drain) into the cysts growing inside her chest. The shunt would later be removed during surgery after her birth.
Difficult pregnancies and traumatic births place families under great pressure. Eleni and Mario are so grateful to their supportive family who stepped in with love and around-the-clock care for their two-year-old Sophia, allowing Mario to constantly be by Eleni’s side in hospital.
Eleni is so proud of her husband and says she couldn’t have done it without his amazing strength and support.
"A lot of couples don’t survive these ordeals and many husbands don't cope well, but mine was exceptional," she said. Mario stayed with me the whole time – wheeling me to all my appointments and sleeping in a chair at my side – he was a constant source of strength."
At 30 weeks, Eleni gave birth at Westmead hospital. It was Mother’s Day, but for this mother and daughter the chance to bond would have to wait for several weeks yet. Dimi needed help to breathe, she was stabilised, placed on a ventilator and later transferred to the Grace Centre in preparation for surgery.
Eleni and Mario prepared for the worse.
"Those first few days were terrifying, we were numb and there were a lot of tears. We worried and we prayed. How could a baby so small survive surgery? We asked lots of questions and were constantly reassured by beautiful nurses and extremely knowledgeable staff. They were so calm and sensitive, knowing exactly what to say and when. We knew we were in the right place," Eleni said.
Four days later, Dimi’s surgeon confirmed that the growth in her chest was a benign Teratoma tumour and that all 500g of it had been successfully removed from her tiny body.
Although born weighing 2.330kgs, after surgery with tumour and fluid gone, Dimi weighed just 1.5kg and Mario’s wedding band fitted around her ankle. The tumour had filled the space reserved for her right lung but the good news was that her lung would grow and it would become stronger over time. Her scar, which at the time seemed enormous, is today a silent reminder of her special inner strength and a mark of her courage.
Thank you Dr Soundappan.
After discharge from Grace, Dimi spent the next four months in Westmead’s newborn intensive care unit attached to a special machine to help her breathe and a feeding tube to help her grow strong enough to go home – which she did ….on Father’s Day.
For the next six years Dimi’s dedicated family ensured she regularly attended Outpatient appointments at The Children’s Hospital at Westmead for CT Scans, blood tests and tumour marker tests. Early feeding issues (she needed the feeding tube until nine months old) had affected her speech which has subsequently been resolved with speech therapy.
Eleni says she still worries about her daughter and although a recent bout of bronchitis caused some concern, she knows that Dimi has a very strong will and despite a challenging start to life is doing really well.
"She’s an amazing little girl, a great student and she loves her sister Sophia. Our girls are both very much aware of other sick kids and they want to help too. Mario and I are so proud of them," Eleni said.
It would seem that they’ve inherited their parent’s compassion for others and, if their donation of gifts at Christmas is an indicator, they’re living proof of the Gerassis ethos ‘we do what we can’.
Eleni and Mario are proud supporters of The Grace Newborn Intensive Care Unit. They have been fundraising for Grace since 2010, purchasing a large sterilizing unit, renovating the interview and mothers’ expressing rooms, as well as organising Christmas fundraising activities. In addition to these generous efforts this year they organised a special Gala Dinner "Tiny Miracles" to show their appreciation and support for the Grace team. The Gala was wonderfully successful - achieving their goal to raise more than $100,000 to purchase two new ventilators for the ward.
In good hands
When Ben was born he took his parents on an emotional roller-coaster ride. Here Emily shares her story in the hope that others facing similar circumstances can find comfort, strength and hope.
Canberra couple Emily and Marc were enjoying their second pregnancy and were excited about another baby – a little brother or sister for two-year-old Willem. Excitement changed to anxiety when the 20-week scan identified an anomaly that would require further investigation.
"We spent the next four weeks with our imagination our worst enemy. Finally, following referral to the Fetal Medicine Unit, we were told that our baby had a congenital heart defect," said Emily.
"We were referred to a specialist paediatric cardiologist at The Children’s Hospital at Westmead in Sydney who confirmed a condition called Transposition of the Great Arteries (TGA), requiring open heart surgery at birth."
TGA is associated with several different arrangements of heart anatomy, so is not one condition. The common feature is that the connections between the heart and main arteries (the aorta carrying blood to the body, and the pulmonary artery carrying blood to the lungs) are abnormal.
"We were later to find out just how complex this TGA condition could be," Emily said.
Before their baby was born, arrangements were made for Marc and Emily to tour the Grace Centre for Newborn Intensive Care so they could learn a little more about what to expect when their baby arrived.
Emily was surprised how calm and controlled the environment seemed despite the complexity of care and elaborate machines surrounding each crib. Undertaking this personalised tour, Emily explained, was very reassuring.
"On the day we visited the Grace Centre, a newborn was having a septostomy – the very first procedure that our baby would need. Seeing this baby first-hand just after he had the procedure helped us understand potentially what we were facing and we really appreciated the staff making that connection for us," Emily said.
Early treatment for TGA is directed at maintaining oxygen levels at a safe (if not normal) level. The balloon atrial septostomy is necessary to improve the mixing of pink and blue blood so oxygen levels in the body can increase enough to be ‘safe’ for the baby until surgery is possible.
Plans were made for Emily to give birth in Sydney to facilitate the immediate transfer of their baby to The Children’s Hospital. Ben was born on 14 June at 11.37am.
"I met my beautiful boy four hours later – he had been in good hands! Marc was with Ben in Grace and the support was fantastic. The doctors explained each procedure, asked his permission, included him and made him feel respected – which was so important during this stressful time as he had to be there for Ben while I couldn’t. While I was still back in the delivery ward at Westmead (Adult) Marc was my lifeline; sending me text messages with constant updates to keep me informed about what was going on. The Grace Centre ‘get this’ and obviously know how extremely empowering such support is at this time," said Emily.
"By the time I arrived in the Grace Centre I’d only really seen the top of Ben’s head before he was whisked away due to the seriousness of his condition. Only the week before I had him he had been upgraded to a priority 1 transfer. This meant he was taken from me almost immediately after birth and transported to Grace so they could stabilise him and do the first procedure. It was so overwhelming to give birth to Ben and then meet him later in this critical care environment. I didn’t want to risk hurting him or put anything out of place – Ben didn’t feel like mine. The nurses were gentle and comforting and reassured me that it was perfectly okay to cry. I felt better immediately. I’m sure they sensed how I was feeling because they were very good at making me feel like I had some control as they actively helped me sit beside him, connecting me with him so that bonding wasn’t compromised. I remember how nice it felt to change his nappy – for many parents a simple, every day task but for us an amazingly special activity to share.
All the staff in Grace are so very good at what they do; they constantly work at keeping you informed, making sure you have a clear picture of what is going to happen before anything does. They put a lot of thought into how to make whatever is going on the best experience they can, considering the circumstances. They have regard for the whole picture and they think about you," said Emily.
"One of our fondest and unforgettable memories, captured by staff on video, is giving Ben his first bath. He was just one day old – pre scar – and for a time we weren’t thinking about life and death," she said.
"Breastfeeding Ben was important to me and the lactation nurse was wonderful. She answered my many questions, organised pumping equipment and helped me set it all up. She set up a place in the fridge, then the freezer, for my milk. I pumped for seven weeks so on discharge all my milk was able to be securely packaged in freezer packs for the trip home.
"We thank the Grace team for understanding the importance of these simple gestures and practical support."
Our little fighter
Ben had undergone two momentous surgeries and he wasn’t yet four days old. Two more would follow before he was four weeks old.
Marc and Emily were both scared and nervous.
"It is really hard to leave your newborn baby in theatre and walk away," said Emily.
"The first open-heart surgery took much longer than expected because of the rare way that Ben’s coronary arteries had formed making repair extremely difficult. Eight hours later, his cardiac surgeon breathed a sigh of relief.
Emily and Marc remain in awe of Dr Winlaw’s creativity and skill and equally thankful for his empathy and consideration. In everyday life Emily explained, a quick phone call may seem a small gesture but for us was significant and positive moment in their ordeal.
"When Dr Winlaw took the time to have someone call us to explain that the surgery would take longer than expected, we appreciated being given that information and it is something we will never forget."
Two days later Ben’s heart was clearly not well and he was rushed to a second open-heart surgery. Twelve hours later, Ben’s coronary system had again been reconfigured and this time he left surgery attached to an ECMO – a bypass machine that would do the work of his heart, giving his body a rest and a chance to recover.
"Dr Cooper, our paediatric cardiologist, later told us that Ben had ‘the naughtiest coronary artery he had ever seen’.
"It is absolutely amazing now, to stop and think about the skill, tenacity and sheer discipline of this surgical team desperately working on this fragile little heart – no larger than a 50 cent piece – performing intricate and unique surgeries that would save his life.
"Because of the way Ben’s left coronary artery had formed there was so little extra material for the surgeon, Dr Winlaw, to work with he had to create functional parts and position it in a unique location," Emily explained.
"We will remain eternally grateful to everyone who worked so hard and fought for Ben. From the nursing staff, to the doctors and social workers and so many more behind the scenes people who we never saw but I know were there doing their best, playing an important role in Ben’s recovery. He would not be here today if not for all those amazing people who kept trying new things and giving such a high standard of care, even when the outcome looked catastrophic. We’ve really only just started on this journey, but we know we are not alone and are thankful for the continued support.
"Ben was four weeks old before we heard him make a sound; it was fantastic to hear him cry. Seeing all of his little face after his ventilation mask was removed was an extra bonus; he was so adorable.
"He’s still adorable and is loving life. His sleeping patterns are erratic but I think he’s just catching up on what he missed out on while comatose during his first month of life," Emily said.
Because of the complexity of Ben’s condition and the uniqueness of his heart’s reconstructive surgery Ben was being closely watched and his progress followed with much interest while he was in hospital. As soon as he was cleared for discharge the team from the Grace Developmental Clinic stepped in to shore up Ben’s follow up appointments and facilitate referral to specialists back home.
"They are an extremely professional and wonderfully supportive team," said Emily.
"I had so many questions, everything I’d been worrying about while Ben was in a coma but hadn’t yet articulated. How would all he’d been through effect his development? Would he catch up? What should we do to help? These questions and many more were freely answered as the team talked about cognitive and movement aspects of his development in a well-rounded and easily digestible way.
"We hadn’t even left Sydney after being discharged when staff from the development team had called and co-ordinated follow up care for Ben.
"I have to admit, once back home in Canberra time was precious and I was sceptical about the value of keeping an appointment back to Sydney with all the associated stresses that travelling with two young children brings. I should never have doubted.
"The appointment ran like clockwork. All the team members knew about Ben and were familiar with his journey. They videoed some of the appointment and we were so impressed with their interaction and that they included Willem in the process. They maintained a high level of communication, telling us everything they were doing and why. They explained the developmental markers against which they assessed Ben, putting everything in context. They gave us the results of tests there and then and explained what they meant.
"I couldn’t help think how far things have come in healthcare. Unlike 20 years ago, parents today are treated differently, they are part of the care team and are encouraged to ask questions, actively participate and really understand what’s going on. There is a transparency which we experienced from first arriving in Grace that we didn’t have to create, it was in-built and part of how it is all run.
"Marc and I left the appointment satisfied that we had certainly done the right thing and had not wasted time coming back to Sydney. We don’t have a clear view of how Ben’s heart function will progress so it is important that he be closely monitoring. Marc and I strongly believe that humans are very good at creating new pathways so we are positive and have a great deal of hope for the future. We are so glad that Ben has been invited to participate in the Grace Developmental Clinic and as we travelled back to Canberra we felt reassured about his development and were happy knowing that where he is, is just fine.
"We’ll definitely be back for Ben’s 12-month appointment and have every intention of attending his 36-month assessment. I strongly recommend that if you are invited to receive this enormously valuable ongoing support of the Grace Development Clinic you embrace the special care offered and make the most of these opportunities."
Ben's last cardiologist appointment showed his pulmonary artery has concerning narrowing which unfortunately will need intervention within the next 6 to 12 months. We will get a clearer picture next check up but hope that a less invasive procedure, like a stent or balloon, can be used. This would help avoid more open-heart surgery until Ben has time to grow a little bigger and stronger.