An 18-month-old Queensland toddler, who is the size of a newborn, has undergone life-changing surgery after being born with an incredibly rare genetic condition.

Gemma Bergin and Fiachra Deasmhunaigh were told during their pregnancy that their daughter’s growth had significantly slowed in the womb. But it wasn’t until the little girl was 12 months old that they full extent of her condition was discovered.

“We knew she was going to be born quite small but had no idea about her hips or her rare condition until one year after she was born,” Gemma explained.

Ocie is one of only 20 people in the world with IMAGe syndrome, a condition that includes intrauterine growth restriction (IUGR), metaphyseal dysplasia (genetic bone disorder) and adrenal hypoplasia congenita (adrenal gland disorder).

She was born at 37 weeks via planned c-section, weighing just 1.3kg. But it wasn’t until a few months later when she stopped growing and became unwell that the couple were told of Ocie’s rare condition.

“We underwent genetic testing, only available in America, and in June this year those tests revealed Ocie’s condition was inherited from both myself and her dad.”

Her diagnosis came as a ‘complete shock’ to the couple, who recently watched their tiny daughter endure two surgeries at Mater Children’s Private Hospital Brisbane, under the care of orthopaedic surgeon Dr David Bade. Ocie had her hip dysplasia repaired so she will eventually be able to take her first steps.

“Ocie’s condition is incredibly rare. When you get a condition like this, there is no set plan to follow,” Dr Bade said.

“Hip dysplasia is not a condition we operate on in newborns. Ocie is the size of a newborn but she is at an age of surgical intervention to correct dislocated hips.”

Ocie’s casts will be removed by Christmas, and she’ll then be in a baby-sized brace for 10 weeks.

“We can’t wait to see what the future holds for our precious little miracle and watch her take her first steps.”

(main images courtesy Annette Dew)