How the Foundation was born

When we had Megan, our first child in 1990, she was two weeks overdue. Prior to Megan’s birth, my wife Susan and I were in the hospital every second day for Megan’s heart rate to be monitored. Once, we were left longer than the normal ten minutes. The nurse had forgotten about us and as we listened to Megan’s heart rate, it began to slow down. Susan and I looked at each other and thought ‘What the..!’ We got the nurse, who listened and rushed to summon the head nurse. She listened and said to Susan, “You will be having your baby today darling!” The medical crew was scrubbed up and Megan, our first child, was born by caesarean section.

When we were having our second child, my wife and I wanted a natural birth. We approached the hospital but because Susan didn’t have a tested caesarean scar, they wouldn’t admit her into the natural birthing centre.

We decided that our child should be born naturally at home. It was a very long labour, going for twenty-four hours from four in the afternoon. Susan was in the shower when I heard her scream. The midwife immediately checked the baby’s heart rate and found it almost too faint to hear. We rushed to the hospital – only five minutes away. Hanna was born in hospital, very blue; the hospital staff had to revive her. I can remember one of the nurses repeating over and over, “You have a very sick baby, a very sick baby…”

When we think of hospitals and illness we don’t generally think of babies.

Each year, the Neonatal Unit at Canberra Hospital takes in around 700 to 750 babies from the Canberra/Southern New South Wales regions who begin their lives with a fight. Over 300 will require assisted ventilation with equipment not available elsewhere. Many are pre-term; many have complications and spend longer periods of time in intensive care.

“I can remember this Asian fellow (a doctor) wandering into the delivery suite while my wife was lying on the stainless steel bench, waiting for the afterbirth to come. He looked at the baby and us and then sauntered out again. I thought, “Do something – hurry! Rush.” Our baby was whisked away and the doctor came back into the room with a tape recorder. He said he was going to record the conversation and asked me some questions for five or ten minutes. I wondered why he was recording; was it in case they got sued? However, when he finished, he took the tape out of the recorder and gave it to me!

I got home later that night and listened to the tape. His first words on the tape were, “you probably won’t hear what I have to say because there are so many things on your mind…” and he went on to talk about what they were going to do with my daughter.”

The doctor was Dr Guan Koh, then Director of the Neonatal Intensive Care Unit at Canberra Hospital. A wonderful caring person. Dr Guan Koh has since moved to Townsville Hospital. We formed a close relationship with Guan over the ensuing days. He would pass around the tissues and we all wiped the tears from our eyes at some stage. Dr Koh included. He and his team gave us vital support during this time: we were faced with the decision to keep Hanna on life support or take her off and let nature take its course. We took her off life support and she died in our arms not long afterwards.

The interaction between the Unit and us did not stop there. They would ring and see how we were going; Guan even brought a book for Megan on one of his visits to our home. The devotion of the staff of the Unit to my whole family was exceptional.

Neonatology is a fairly new area of medicine. The staff at Canberra Hospital believes in Family Centred Care, not only looking after babies but the family unit as well: the Unit promotes progressive involvement in care. The staff at the Unit encourages parents to make decisions for their child. They try to empower parents, believing that when you are informed you feel more involved (whether this news be good or bad).

The parental support provided by the Unit staff goes beyond the call of duty. They hold mother and father meetings, teach parenting skills and baby care, introduce co-parents; there is even a social worker just for dads. Support for families continues after the baby has left hospital. At Christmas time, the Unit staff makes gifts for the parents and holds an annual Christmas party to keep in touch with the babies they have cared for.

I went to see Dr Guan Koh and said, “I would like to give you a donation. Do you have a wish list?” He showed me a list with too many 0’s on it for me! Susan and I decided to assemble a group of people who had had similar experiences and establish a fundraising foundation.

Although the Government provides some staff and equipment, further funding is always needed.

That all happened between November and December 1993. In January 1994, Susan, Megan and I went to Bali to get over the experience. Susan started to get headaches and felt as though there were waves moving through her body. When we got back she was diagnosed with a brain tumour and given weeks to live. After an enormous battle, much surgery, medecines, alternate medecines, meditation, retreats, seizures, ambulance trips, constant dizziness, headaches, nausea… she died eighteen months later. Susan was just 26 years old and our daughter, Megan just 4. I had no time to devote to the establishment of the Foundation during this period.

Once Susan died I resumed our joint commitment that we had made some 20 months earlier and former Chief Minister Kate Carnell launched the Foundation in 1995.

We have a small board comprising of previous Neonatal Clinical Directors, lawyers and an accountant. Activity was then and still is dependent on the time everyone has available. We encourage members of the public to help the Foundation raise money for education, research and medical equipment.

The Foundation is 100% voluntarily staffed and 100% of the funds raised go directly to helping sick and premature babies from Canberra and surrounding regions .

When we were involved with the Unit we discovered that they were poorly funded. A lot of their equipment was 25 years old. Now, they are among the best equipped in the world. According to Professor Graham Reynolds, Consultant Paediatrician, ACT Health, Previously Head of Neonatal Intensive Care and Director of Paediatrics and Child Health as well as Associate Dean, Australian National University Medical School

“The Newborn Intensive Care Foundation is a unique model for a charity in Australia and characterised by having no administrative costs, seamless and fast responses for requests that unambiguously enhance Neonatal Intensive Care services and a create an environment that definitively changes lives.” “…the Foundation, has quietly and unobtrusively raised funds that has allowed the neonatal intensive care service at this hospital to lead the nation in many areas of clinical care and family support.”

We send nursing staff to conferences to see how other units operate – we have sent staff to America, Scotland, Sydney, Brisbane and New Zealand for training and education. On their return staff then teach what they have learned to the other staff in the Unit. We also run an ongoing awareness campaign through the media.

Medical treatment for these critically ill babies needs to be efficient and up to date. The Foundation has provided funding for nursing staff, education and research. Nurses have been sent to various locations for training and the Foundation purchased a computer projection unit, which provides much more training exposure. The Foundation has partly funded nursing degrees and provided interest free loans for nurses in training.

Since launching, the Foundation has made some amazing achievements without Government funding. They have raised around $6,000,000 in cash and equipment or in-kind support. Much of  this has been spent on medical equipment such as incubators and a cerebral function monitor (EEG). Previously, babies had to have their heel painfully pricked to measure for jaundice; the Foundation bought a non-invasive machine so it doesn’t hurt.

The Foundation also purchased a nitric-oxide delivery system: previously, staff had to modify a system designed for adults, which was very difficult to use.

Anybody can do anything to raise any amount of money. We are here to help and to accept that donation, 100% of which will go into helping the region’s babies. We are 100% voluntary.

The Foundation has also provided comforting equipment for parents and families. The Foundation’s first purchase was where the Hospital had bought just 2 breast pumps for expressing milk: the Foundation bought three more so that mums did not have to queue. They funded an entertainment unit where families can watch television in a relaxed environment. More importantly, the Foundation gained all the furniture for a parent’s overnight room; no more did parents have to leave the Unit and their newborn baby overnight. Other children of the family are also looked after so parents can focus on the newborn knowing their other children are being cared for.

It goes without saying that having a baby in intensive care is a traumatic and distressing experience. Many have appreciated the Foundation’s support and their efforts to increase community awareness.

Please make a donation. All gifts over $2 are tax deductible and will make a difference to the quality of care our region’s babies receive – life should not be a struggle when you are just a few hours old.

UPDATE 29/8/2012 Finally the new Centenary Womens & Childrens Hospital’s NICU has opened in a state of the art building to house the equipment the Foundation purchases and the medical and nursing staff that put it to such good use.

UPDATE 2019 After supporting the ACT NICU and regional hospitals in southern NSW, the Foundation has begun to support hospitals in Central Gippsland, Victoria

Peter Cursley 2019