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From the first breaths 

Effie and Georgie Koufalus could not hold their precious baby girl Madelin for the first three weeks of her life. 

Born on 22 February 2016, Madelin weighed only 480 grams when she arrived at 23 weeks and three days and was taken to the Women’s and Children’s Hospital Neonatal Intensive Care Unit (NICU). 

“She was my third pregnancy, the first was born still at 20 weeks and our second had anencephaly,” said Effie. “After seven rounds of IVF, Madelin was our miracle baby.” 

Madelin spent 150 days in hospital, and like many babies within the NICU, was part of life-saving trials through the University of ���˲�Ʊ’s Robinson Research Institute. 

“Of course we said yes, we wanted to help any other families that we could,” Effie says. “It’s also one of the reasons I started volunteering at the hospital cafe – I wanted to give back.” 

The Robinson Research Institute (RRI) is opposite the Women’s and Children’s Hospital. The researchers in the Institute focus on solving the puzzle of healthy human reproduction and child development. 

Professor Michael Stark is the leader of RRI’s Neonatal Medicine Group, as well as the Head of Neonatal Services at the hospital. “I’ve been here for 15 years now and, over that time, advances in our ability to care for the most pre-term babies means delivery at 23 weeks is now not uncommon,” he says. 

“For us, the first 5 to 10 minutes after delivery is crucial. We’ve done some pretty great stuff with patients, but we still lose some. I deliver a lot of those messages to families because it is quite a tough specialty.” 

As RRI’s almost 50 research groups focus on different aspects of early life, Professor Stark leads a multidisciplinary team centred on improving neonatal survival free of neurodevelopmental impairments. 

There are 14 intensive care beds and 35 special care beds for babies born at, or transferred to, the WCH. For some, the treatments they receive as part of their care double as trials for RRI. 

“Some of the babies in the unit might be in a couple of trials at once,” Professor Stark says. 

“Sometimes, time doesn’t allow to seek permission before we deliver treatment for a condition, so we’ll deliver the treatment and then go back and explain to the parents what we did, an approach called deferred consent. 

The parents want to be involved, they want the best for their own kids, but they also want to help the next people coming through, so recruiting is never a problem.

“We also explain that we’re working on a trial in this space and offer the opportunity to participate. The parents want to be involved, they want the best for their own kids, but they also want to help the next people coming through, so recruiting is never a problem.” 

The trials are taking things back to the fundamentals, exploring the impact of changes using information from other demographics. 

“One of the big trials we’re working on is about blood use in transfusions. We are hoping to answer questions, su