Why the foundation must continue

THE FOUNDATION’S MISSION.

The Newborn Intensive Care Foundation’s mission has been able to assist in the development of the Neonatal Intensive Care Unit and Special Care Nursery at the Centenary Hospital for Women and Children. Our support covers a wide range of activities, which include the provision of additional equipment essential for the continuing improvement of the service which is not available through normal Government channels. In addition, the Foundation supports research and education activities so that the NICU/SCN can contribute to the global fund of knowledge of problems of the newborn.

THE NEED.

The NICU/SCN at the Centenary Hospital for Women and Children is the principal centre for neonatal or newborn intensive care in the ACT and southern NSW. As part of the New South Wales neonatal network and in its association with the newborn emergency transport services (NETS) operating from Sydney, the Hospital provides a referral service for babies born in surrounding New South Wales and Victoria. The Unit admits approximately 700 babies each year, more than 200 of who require assisted ventilation using sophisticated equipment not available elsewhere.

Approximately 200 to 250 babies are admitted from Southern NSW each year.

The NICU/SCN treats a wide range of problems originating in the newborn period. These range from extreme prematurity, babies weighing only 500 grams at birth, to the other end of the spectrum, babies who are large for their gestational age and occasionally in excess of 5 kilograms at birth. A wide range of medical and surgical problems are addressed and the NICU/SCN has established a significant reputation in the quality care of the newborn.

Within the framework of quality care, the aim of the NICU/SCN is to assist babies in the process of recovery and during their transition into outside life in as safe and as positive way as possible. The protection afforded to the frail newborn infant in this transition to life after birth requires a high degree of clinical expertise and technological support in order to maximise the potential for normal life after discharge. Inevitably, the costs of such a service are increasing but with it we ensure a decreasing frequency of handicap or later problems in babies that have been discharged from this service. The effectiveness and efficiency of this program in achieving these objectives is jointly dependent on technological support and on the expertise of the nursing and medical staff.

It is the technical aspects of care that enables quality clinical care to occur and we constantly need to update equipment and introduce new technology to push the boundaries of quality care forward.

FUNDING SOURCES

Since 1997 the NICU/SCN’s funding for equipment and education has been enhanced by selective support from the Newborn Intensive Care Foundation. There has been great progress in the technology for treating newborn babies, and the Foundation’s gifts have transformed the quality of the technology within the NICU/SCN and have enabled the team to develop its clinical care so that now, in its home in the new Centenary Hospital for Women and Children, it rivals in quality the leading centres in New South Wales, Australia and worldwide.

The Foundation is completely reliant on donations from the community, and 100% of donations are spent on the needs of the NICU/SCN. The importance of community support is vital. Whilst the ACT Government funds day-to-day routine activities within the NICU/SCN in the form of staff and stock, etc, additional equipment, education, and research require more funding to develop new skills, provide new technologies and answer research questions to improve outcomes. External funding allows these aspects of critical care to go forward and expand the quality care of the NICU/SCN.

Throughout the year, the Newborn Intensive Care Foundation receives funding requests from the Director of Neonatology at the Centenary Hospital for Women and Children. Where possible the Foundation makes funds available or provides a link to an organisation or business that can directly assist with funding for the requested equipment. We meet high priority requests, but each year there is always more need.

Since inception, the Foundation has contributed well over $4,000,000 in cash or kind to the Neonatal Intensive Care Unit/Special Care Nursery at the Centenary Hospital for Women and Children.

THE GRANDMOTHER’S STORY  

In 1993, my grand daughter was born by Caesarean Section, two months premature in the neonatal section of the Canberra Hospital. The baby was not expected to live and her mother’s health was precarious.

My husband and I came to Canberra from Newcastle with grave fears for our family. The sight of this feeble infant was most distressing. With tubes and monitors everywhere, we could scarcely believe our eyes.

Over the next week there was a little improvement but our daughter was becoming stronger and began the long process of providing breast milk for her daughter. She stayed all day every day for the next few weeks, we came down every weekend and finally she grew well enough to come home.

Throughout this time we were overwhelmed by the care, love, determination and dedication of the staff in that highly efficient unit but also the personal care shown to family members who travelled to share in the slow but continued progress of this special child.

Her first year was very traumatic as she was difficult to fee, made slow progress in weight and often had what eventually became asthma. As time progressed she became a happy always smiling lovable toddler who brought joy to her family but also to those who had watched her struggle to good health.

Eighteen months after our granddaughter, her brother was born, 4 weeks early. Our daughter went into labour at seven months but the staff at the neonatal ward again worked wonders to hold off the birth for four weeks. He was in better health than his sister had been so made more rapid progress.

He also had breathing problem so as soon as they were old enough they began swimming, running, cycling, cross country running, for exercise, enjoyment and eventually, competitively. Our grand daughter won many cycling and running events and represented the ACT in triathlons in several states over her junior high school years. Her brother now in Year 11, developed an interest in soccer and still plays as a goal keeper in a high division.

Our grand daughter is studying Arts Law at ANU, having completed year 12 with a very high ATAR score, has volunteered at an orphanage in Nepal over the Christmas holidays and is a strong healthy 18 year old with many interests and a joy for life.

We cannot speak too highly of the Neonatal ward at TCH and will always be thankful that such a place was available when it was most needed for our family.

THE MOTHER’S STORY 

On Friday 12th February, 1993 I worked a full day and wandered back to my car in the heat. I was 34 weeks pregnant, hoped to work for a few more weeks and, once again, ignored the vague cramping in my back assuming it to be Braxton Hicks contractions. My feet were swollen and I looked like I had swallowed a volleyball.

In the middle of the night I became suddenly ill and made it to the bathroom where I spent several hours, assuming I had some sort of very bad food poisoning – the symptoms so similar with diarrhoea and vomiting and severe cramping. We were renovating. The bathroom was new but the floorboards in the hall were up and I had to go over a plank to get between the bathroom and bedroom. We were not ready for the baby – my bag was not packed and my husband was sleeping oblivious to my situation. Strangely our dog, a big cross Rottweiler and Shepherd spent all night glued to my side. In retrospect, it seems he was more aware of what was happening than I. When I started bleeding, I suddenly caught on, woke my husband and dressed.

I still remember the drive to the hospital – we were only 5 minutes away, it was four in the morning, there was not a soul on the road and my husband stopped at a red light. I calmly told him to drive straight through as I was having a miscarriage. It was probably the first time in his life he broke the law. Weirdly, I remained calm, even when I couldn’t get into the maternity area of the hospital, then when I came in couldn’t find anyone. I wandered around for five minutes before I worked out where I had to go to – upstairs – not the birthing centre as I had previously imagined.

I was monitored, as was the baby. It turned out I had made things difficult by using a maroon towel to catch the bleeding – they couldn’t work out how much blood I had lost! But at least my towels weren’t stained – not that I have any idea where that towel ended up. This was the start of a life changing experience in which one towel was not even relevant.

After several hours of monitoring, the baby went into distress and it was and it was decided that an emergency caesarean was needed. After that decision I remember nothing until I was wheeled to the NICU to see our baby – I refused to go to a room until that was done. The whole of the terrifying ordeal was experienced by my husband, alone and not emotionally or confidently experienced in the medical ways – in fact he becomes faint at the sight of blood. My body went into shock and there was serious concern when my body temperature refused to rise. My husband had to choose between a frail baby and a wife who might not make it. He was encouraged to name our baby, that apparently increased the odds for all around. It was lucky we had agreed on a name! He had to make the horrible call to my parents after Samantha was born and before I had been stabilised.

While our baby girl came out quite perfect and reasonably healthy at 2.075kg, she deteriorated rapidly. It turns out she was so happy in the womb that the defence mechanism that often assists premature baby lung development, didn’t kick in. She had no warning she was coming out and her lungs were just unable to cope with the shock. By the time I was wheeled up to see her, she was in a high oxygen humidicrib and within hours she had been moved into the high care unit – fully paralysed and on a ventilator.

Samantha stayed this way for days and our life went on hold. We could only stroke her and talk to her. We couldn’t hold her and I couldn’t feed her. It was amazing watching the little signs – oxygen saturation increasing when she heard our voices or felt our touch. It was amazing how we held onto those tiny things as little lifelines. I still remember the first time I held her – so tiny and only for moments as the nurses changed her bed, that joy but also the fear that she might die being unattached temporarily. And then there were the tears when we had to put her back but the wonderful nurses (I thought of them as guardian angels) let us hold her for longer as the monitors told them it was doing her good.  I also remember shortly after, the request to give her a blood transfusion how daunting that first serious decision for our child, how terrified it made me as I wondered for the first time that she might not make it.

But she did and ever so gradually each traumatic hurdle was overcome. Removal of the ventilator Tube feeding to breast feeding. Changing the canular sites. The endless blood tests. The first bath. Nappies. Going home without her. The horrid eye test which I couldn’t let her got though alone. The midnight trips to the hospital to breastfeed. The last night in the hospital, together in the overnight room.

I still remember the amazing nurses in the ward, their understanding of my trauma being on the ward without my baby. But the NICU became our home, supported by the nurses but also by the other families going through similar experiences.

I remember one day going down in the list with a woman and her new baby. She had her cigarette ready to light on the way out the door and proceeded to smoke it over the top of her new baby. I was so angry at the unfairness of the situation. On that day, my husband had brought our dog Kato over to see me. Kato was upset and confused and we thought he needed to know I was still alive. I came out in my wheelchair and Kato wanted on my lap – all 37kg – not fun on a caesarean wound. I cuddled him and introduced him to the smell of Samantha. So much distress and such a long haul – such a contrast to the blasé approach of the other new mother, whose sole objective was to get that smoke as soon as possible.

We NICU mums were so different. We were lucky to learn so closely the fragility of life. Many of us were lucky to take our children home but we were also changed by experiencing and sharing the pain of those not so lucky.

Once at home, the challenges began again. Having had everything monitored day in day out, having become so aware of the finely balanced vulnerabilities of our babies, being alone was regularly more terrifying. But one small challenge after another we got through and a healthy child emerged. We now say that Samantha was in a hurry to get out and has been in a hurry for each new life experience since.

17 months later, I was in again. At 31 weeks I began contractions with my son. While with Samantha I could trace the root cause back to a slam in the belly by a volleyball, which ultimately must have caused a small bleed in the placenta, then gradually a large clot which started to push the placenta away, with Jake there seemed no reason. I was determined not to allow him to come early so took the drugs and laid low as long as I could. I did not want to spend weeks in the NICU with a toddler in tow. Jake was born at 36 weeks, but somehow developed pneumonia and we were reunited with many of the same lovely nurses at the NICU. This time it was only for a week.

Now I get angry at my teenagers’ nonchalance, their assumptions about what life will bring them and their sense of immortality. Sam still bears a myriad of tiny scars on her wrists from her first four weeks as a pin cushion. But she is alive and attacks life. Once out of the NICU, Jake became a calm complacent baby, such a breeze after the many false starts at parenthood we made with our sickly daughter. Both children were back on a normal development path by toddlerhood and, ever since, both have lead us the same merry dance that defines parenthood.

To this day, I marvel that a child grabs you by the heart as soon as you realise you are pregnant and somehow never lets go. Some of our friends ponder whether parenthood is worth the effort, cost and pain. We don’t – we would do it all over again.

MUM VANESSA’S STORY 

On Sunday the 31st of January 2016 I gave birth to a beautiful baby girl, Lily Wilson. Lily was born via an emergency C-section at 35 weeks and 6 days old and weighed just shy of 2.2kg. She was tiny, adorable and due to complications she was the baby doctors weren’t sure I would ever be able to have. Due to her prematurity and size doctors admitted her into the NCIU to be reviewed. The doctors said, she is a Special Care Unit baby but the beds were full. At day 2, Lily was moved to the Special Care Unit, the doctors wanted her to gain weight, grow and learn how to suck and then she come go home. At day 3, I was discharged. Leaving the hospital without my baby was the hardest thing for my husband and I had to do. Every day we visited our baby between 8:00am to 6pm, it was emotionally and physically exhausting. Then the nurses introduce us to the NCIU Cam. At any time of the day, my family and I were able to log in and view our baby. At a very hard time, this facilities made it easier to be away from her to take care of ourselves, so we could take care of her. Lily was in the hospital for a total of 21 days and the NCIU Cam made this time a lot easier and we will be forever greatful.

LITTLE ALLEGRA’S STORY

On 28th December 2012, our daughter Allegra was born prematurely and critically ill. She was suffering from Intra-Uterine Growth Re- tardation, a condition that saw her nearly starve to death whilst in-utero. The statistics for babies born with this condition are sober- ing – at least 1 in 5 will be stillborn, and those that do survive often experience social, biological and cognitive developmental is- sues (1).

We were fortunate to have access to Canberra -based neonatal intensive care facilities where Allegra could be tube-fed and monitored around the clock by a team of specialists. On the evening of Allegra’s birth, I sat down and composed some music, and this hobby has become a very enjoyable therapeutic pursuit during Allegra’s varied treatments, surgeries and hospitalisations.

There are more than 47,000 babies across Australia requiring some form of special or intensive neonatal care similar to that received by Allegra. Of these babies, more than 800 are treated in Canberra and the Newborn Intensive Care Foundation works tirelessly (and voluntarily) to raise money to purchase new equipment to help these sick and premature babies.

SOPHIA’S STORY

If I had to name one defining incident that changed my life (and indirectly led to HerCanberra.com.au being created) it would be the premature birth of our youngest daughter.

Four years ago, almost to the day, I was in Canberra Hospital. I was 27 weeks pregnant with my second daughter and things weren’t going so well.

Two weeks before, feeling a little peaky, I had walked out my office door – and I never went back. Within 24 hours, I was admitted on bedrest and that’s where I stayed until 31 July, 2008 when Sophia Rose was born at 30 weeks.

For nearly six weeks, I had fairly calmly dealt with events. I coped with the utter isolation of livening in a 3m x 3m hospital room with really only the midwives and Dr Phil for company (and a wonderful next-door roomie called Katrina). I had managed the heartbreak of being away from my husband and daughter (who turned two while I was in hospital). I honestly thought id endured the worst. But nothing could have prepared me to the fear I felt when they lifted my little girl from my belly… and I saw just how tiny she was.

I glimpsed all 1.43kg of her – briefly – before she was whisked away to The Centre for Newborn Care (NICU). She was surrounded by a tangle of wires; her sweet face obscured by the tube that was breathing for her. And then she was gone… and the rollercoaster journey began.

I thought I was tough. My husband, Drew, and I had already survived the heartache of miscarriage, infertility, and assisted reproduction. But honestly? Nothing can prepare you for watching your child struggle to stay alive. The loss of control is shocking; the situation surreal… such a stark contrast to the first few sleep-dazed, pyjama clad weeks of getting to know my first daughter.

The hardest thing for me was not being able to hold her for five days. She was so little, so fragile, that even stroking would agitate her. So surrounded by the constant alarms of monitors and the grave faces of other parents, I watched her through the plastic windows of her humidicrib and willed her better. After days of feeling an almost physical pull to embrace her, they finally placed her on my chest and nuzzled in – screaming blue murder when they took her away. And my heart knew she recognised her mum.

For 71 days, we existed inside the NICU bubble. Our outside life became a logistical nightmare as we struggled to arrange care for Olivia and Drew’s work commitments, breastfeeding and ‘cuddle’ times. We had good and bad days. We watched countless other babies get better and go home, and there were times when I didn’t think we would ever leave. I rarely let myself think the worst, but there were times when I really didn’t know if she’d make it… and there are just no words to describe the gut-wrenching emotion that provoked… I won’t even try.

But eventually, nearly four months after I was first admitted, we did. And it dawned on me that getting her home wasn’t the end of our struggle… but just one hurdle crossed.

The first two years were tough. Sophie has chronic lung disease. Sounds worse that it is but, basically, her lungs aren’t much chop and a cold for any other kid could mean pneumonia for her. So, even though we got her home, she needed five medications per day to keep her well. Even today, whenever she gets a cough, we’re on edge waiting to see if it will mean a trip to the ED. We’ve been lucky that the last 18 months have been hospital free (I think I have developed a TCH phobia from far too much time within its four walls).

Any parent of a premature baby will tell you that it’s a hard slog. But some have it worse than others. Whenever I would feel sorry for myself, I would remind myself of the mum whose little boy (born at 24 weeks) was still in hospital aged 17 months – he had experienced the total of just one week ‘outside’. His mother would catch the bus every single day from Belconnen to visit him… I was in absolute awe of her strength. I remember her saying to me one day “Samuel was born on a Wednesday, and so every Wednesday I tell myself I am one week closer to having him home.”

Then there was the mum who had delivered twins – one who died at birth, and the other who had been diagnosed with a severe genetic disorder right after the birth. “We’re hoping we’ll be able to take him home for at least a few weeks,” she said. “But he’ll never be able to breathe or eat by himself.” Every single day in NICU was a mix of heartbreak and hope.

Our family – and thousands of others from Canberra and southern NSW – will always ALWAYS be grateful for the care provided to them by the staff of The Centre for Newborn Care at Canberra Hospital. I owe them our daughter’s life. Every baby that passes through the NICU’s doors is fortunate enough to receive their expert attention – they take shell-shocked parents and guide them through the emotional and confusing and heartbreaking journey of having a premature baby. They teach them how to touch their fragile tiny creation, how to feed them, how to feel like a mum even when the ‘normal’ functions of motherhood are taken away from you. They take care of the parents as much as the babies.

When you eventually leave the doors of the hospital, equal parts elated and terrified, they provide support. They give you the confidence to enjoy motherhood after such a shocking introduction. They tell you it’s ok.

The Unit admits approximately 600 babies each year suffering a wide range of problems originating in the newborn period. These range from extreme prematurity, babies weighing only 500 grams at birth, to the other end of the spectrum, babies who are large for their gestational age and occasionally in excess of 5 kilograms at birth. The doctors and nurses from the unit care deeply for every single one of these children – I remember entering the NICU one morning to find most of the staff in tears – they’d lost a baby during delivery, and it rocked them all. To them, it’s not just a job.

Sometimes, I find myself close to tears when I hold Sophia’s tiny hand, and notice the faint scars from the lines that once crisscrossed her body. I remember cupping her tiny head in the palm of my hand… the twig-like limbs that jerked and strained against the tangle of wires that were her lifeline. But most of all, I remember her feistiness; her determination to fight… even when she hardly had the energy to breathe. And I think how incredibly lucky we are to have her here. Alive and perfect.

Help give other parents the same change to take their babies home – support the Newborn Intensive Care Foundation today.

ELLE’S STORY

Elle’s story is definitely an amazing one…

She suffered meconium inhalation during birth and had resulting complications, including lunch failure. She was aspirated, intubated and in the NICU for around 10 days.

Elle was acutely ill and really had very slim odds of survival. She gradually improved over the tem days to a point where she could move to the ward, and then she was able to be taken home.

Elle has got an amazing strength and courage and although her parents were told to expect a lot of problems with her health due to her difficult start, she has been a fighter.

She turned out to be an amazing dancer and gymnast, being a country champion, and state champion for many years… she has been on the NSW gymnastics team for a couple of years and has competed at National Level. She has won many awards including a Premier’s Award and the Australia Day Junior Sportsperson award.

A couple of years ago she started competitive cheerleading and has successfully auditioned for the Raiderettes. Elle was actually born and was in the NICU on the day that the Raiders won their last premiership.

She is planning to study sports coaching, exercise science or sports management/media at university.