NICU Foundation

 

Newborn Intensive Care Foundation logo

About the Newborn Intensive Care Foundation

The Newborn Intensive Care Foundation is a local charity that raises money for medical equipment, research and Nurse education to help give the ACT and Southern NSW’s critically ill newborn babies, the best chance to lead healthy, normal lives.

  • 100% voluntary - No administration costs
  • 100% local – Your donation stays in Canberra

100% of money donated directly to the foundation goes to helping critically ill newborn babies of the Canberra region

NICF origins

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 500 babies from the southern New South Wales region who begin their lives with a fight. Over 100 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. Dr Guan Koh has since moved to Townsville Hospital and has been replaced by Associate Professor Dr Zsuzsoka Kecskes, who the Newborn Intensive Care Foundation now take their advice from.

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.

About Neonatology

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. 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.

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 she died eighteen months later. I had no time to devote to the establishment of the Foundation during this period.

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

Once Susan died I got back into it and former Chief Minister Kate Carnell launched the Foundation in 1995.

We have a small committee of 4-5 people. 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 into the Centre for Newborn Care.

When we were involved with the Unit we discovered that they were poorly funded. A lot of their equipment was 25 years old. Now, eight years later, they are among the best equipped in the world. 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.

I am blind to obstacles. People give as much as they feel possible at a particular time. The greatest victory is if our assistance has helped save a baby’s life – though we don’t get to hear about it.

In eight years, the Foundation has made some amazing achievements without Government funding. They have raised around $1,000,000 in cash and equipment or support. The majority 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 hospital bought just 2 breast pumps for expressing milk: the Foundation bought three more. 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 must parents 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.

I still keep a photo of Hanna in my top drawer at work. I don’t know why I still keep it there, but I see it every time I open the drawer.

 

Peter Cursley and wife Susan
Peter Cursley and wife Susan

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.

The Unit is still desperate for equipment they cannot afford. New equipment for respiratory therapy is needed because the ventilators they currently use are obsolete. The Unit has to share an ultrasound machine with other departments and it is not always available. They also need such simple things as incubators and monitors. If each family in Canberra donated the small sum of $5, the Unit would have enough money to purchase these essential items. The importance of community support for these endeavours cannot be overestimated. I implore you to 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. Volunteers are also needed for fundraising and increasing community awareness.

Further Information

Further Information and how to donate to the NICF can be found on their website: