When she was pregnant, Amanda Kamani did everything she could to stop her type 1 diabetes from putting her babies at risk.
As a nurse who had worked in NICU, the West Auckland mum was particularly worried about neonatal hypoglycaemia – a potentially dangerous dip in blood sugar levels following birth.
"I was really worried that my first baby, Tobias, would have low blood sugars and be put in NICU," said Kamani, who had tested her own blood sugar levels during her pregnancy, some days testing herself up to 18 times.
"He probably would have ended up with a tube down his tummy."
She leapt at the chance to sign up Tobias, now 4, for prequel research to a major Kiwi-led study dubbed hPOD, which is now under way in hospitals and stands to improve the care of up to a third of all babies born.
It involved rubbing either a specially-designed sugar gel, or a placebo, into the inside cheeks of at-risk newborns an hour after birth.
Researchers believe the inexpensive gel could prevent them from getting neonatal hypoglycaemia, which remains the only readily preventable cause of brain damage in infancy.
Kamani also put her second son, Xavier, now 2, in the main hPOD trial, which is investigating whether giving the gel to at-risk newborns can prevent low blood sugars.
"It was so easy – just a prick on the heel to test their blood sugars, which they would have had done anyway because both babies were at-risk, and then rubbing in the gel."
The study has just received a major boost with a $2.8 million investment from the National Institutes of Health, the main agency of the US government responsible for biomedical and public health research.
It was rare step for a New Zealand study not part of a US-based collaboration to receive such a grant.
"This shows how unique and important this research is," said study leader Distinguished Professor Jane Harding from the University of Auckland-based Liggins Institute.
"We are delighted because this will allow us to be sure we can finish the study, including the follow-up."
Neonatal hypoglycaemia affects one in six babies.
Left untreated, it can cause developmental delay, brain damage and lowered education outcomes later in life.
The previous ground-breaking "Sugar Babies Study", also led by Harding, showed the sugar gel works as a treatment for low blood sugar, and it was now widely used here and a growing number of other countries, including the UK, Australia, and the US.
"We thought if it works well to treat babies with low blood sugar, could we use it to prevent babies getting low blood sugars?," Harding said.
"If we could do that, we might reduce the number of blood tests they need, reduce the amount of angst that families experience, and potentially even prevent brain damage."
Low blood sugar often meant babies had to go into an intensive or special care unit, separating mother and baby just as they are trying to establish breastfeeding.
Currently, there was no proven preventative, and many at-risk newborns are given formula, which can also disrupt breastfeeding.
At-risk babies – up to a third of all born - are those born preterm, smaller or larger than usual, and babies whose mothers have diabetes.
When the research team tracked some of the babies from The Sugar Babies Trial, they found that children who had experienced low blood sugar as newborns were two to three times more likely to have difficulties with executive function, or skills for problem-solving, planning, memory and attention.
The risk was just as high for problems with visual-motor co-ordination, or skills for fine control of movement, and understanding what you see, at age 4.5 years than children who had normal blood sugar levels.
Strikingly, children who had experienced a drop in blood sugar not detected by routine blood sugar monitoring were four times more likely to have difficulties with these skills.
"This shows that even brief periods of slightly low blood sugar are associated with increased difficulties at 4.5 years, so finding a preventative may well be important," Harding said.
The hPOD trial is about halfway towards its target of 2129 newborns, and is being run at: Auckland City Hospital, North Shore Hospital, Whangarei Hospital, Waikato Hospital, Tauranga Hospital, Hawkes Bay Hospital, Whakatane Hospital, Southland Hospital, and five Australian hospitals.
Pregnant women interested in finding out more about the study can visit the hPOD study page, or email hPOD@auckland.ac.nz.
Other funders are the Health Research Council, CureKids, Lottery Health and the Waikato Medical Research Foundation.