A clinical specialist at the Royal Children's Hospital neo-natal unit, Sharon Downes specialises in the nursing management of babies with the condition.

Last week, the Point Cook resident was named the first recipient of the Dame Elisabeth Nursing Development Scholarship, which offers a unique opportunity to

travel overseas to continue her invaluable work into the Pierre Robin sequence.

The condition is generally diagnosed shortly after birth. Affected babies are generally born with cleft palates, a posterior retraction or displacement of the tongue and an extremely small jaw, which can lead to an obstruction of the airway.

One theory is that at some stage the tip of the foetus's jaw becomes stuck in the point where each of the collar bones meet, effectively preventing its growth.

When the foetus begins to move at about 12 to 14 weeks, the movement of the head causes the jaw to pop out of the collar bones.

Ms Downes said the medical profession was still making new discoveries about the condition.

"Babies will often have breathing and feeding difficulties and struggle to put on weight," she said.

"It was traditionally thought it was only found at birth, but we know now it can present later on.

"It's something which they generally outgrow by six months, but in the most severe cases they require an operation.

"One of my colleagues said it was one of the only conditions in which the more cases he saw, the less he understood about it."

A new surgical technique called internal mandibular distraction, which lengthens the jaw and clears the patient's airway, has alleviated the need for tracheostomy in severe cases.

As part of her scholarship, Ms Downes will attend conferences and visit leading craniofacial surgeons and nurses in the US and United Kingdom.

Once she returns, the scholarship will allow her to continue her research into the condition and IMD corrective surgery over the next 12 months.

"Some overseas hospitals have nurses dedicated to the IMD procedure, so it will be great to learn the latest techniques," she said.

"Because there's been a lack of available information, I'll also be developing information brochures and education sessions for parents."