Surgeons perform medical miracle on 18-month-old who is newborn-sized

At 18 months old, this Queensland toddler still wears newborn-sized clothes and her elfin size created a massive dilemma for surgeons determined to give her the ability to walk.

Gemma Bergen with her daughter Ocie Ni Dheasmhunaigh who was born with a genetic condition impacting one in 20 worldwide. Picture: Annette Dew

Queensland battler Ocie was born with a genetic disease that affects only 20 people across the globe — a condition that makes her the tiniest bundle of “pure magic”.

At 18 months Ocie still wears newborn-sized clothes and her elfin size created a massive dilemma for surgeons determined to give her the ability to walk.

Ocie Ni Dheasmhunaigh was born at South Brisbane’s Mater Mothers’ Hospital with IMAGe syndrome, a condition that includes characteristics of intrauterine growth restriction (IUGR), metaphyseal dysplasia, a genetic bone disorder and adrenal hypoplasia congenita, a disorder that affects the adrenal glands.

Ocie is unable to stand due to hip dysplasia but thanks to miraculous work by orthopaedic surgeon David Bade, 2025 will be the year she takes her first steps.

Dr Bale and his team performed two surgeries at Mater Children’s Private Hospital Brisbane to repair her hip dysplasia.

Gemma Bergen and Fiachra Deasmhunaigh with their daughter Ocie. Picture: Annette Dew

Dr Bade said hip dysplasia is a treatable condition but left untreated it can cause irreversible damage leading to pain and loss of function later in life.

“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.”

Before operating on Ocie, Dr Bade conferred with colleagues overseas and through the Hip Hope Network, a global group of hip health professionals who collaborate on hip research.

“There was a big team approach at Mater to get Ocie’s surgery underway,” Dr Bade said.

“The first thing we took into account how she would get through surgery, measured blood loss and how she would cope with anaesthetics.

Ocie’s casts will be removed from her legs by Christmas and she will be in a specially sourced removable baby-sized brace for around 10 more weeks.

Ocie Ni Dheasmhunaigh was born at Mater Mothers' Hospital with IMAGe syndrome. Photo: Supplied.

Ocie’s parents Gemma Bergin, a makeup artist, and Fiachra Deasmhunaigh, an orthopaedic registrar, said their daughter’s diagnosis had come as a “complete shock”.

Initial pregnancy scans on the Sunshine Coast revealed their unborn daughter’s growth had

“significantly slowed” inside her mother’s womb.

“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,” Ms Bergin, from Budina on the Sunshine Coast said.

Ms Bergin was 20 weeks pregnant when she was referred to the Mater Centre for Maternal Fetal Medicine (MFM) at Mater Mother’s Hospital, where she was diagnosed with IUGR.

An anxious Ms Bergin attended Mater’s Fetal Growth Clinic several times a week for check-ups, with her unborn baby continuing to measure seven weeks behind expected growth.

At 37 weeks gestation, Ocie was born via a planned cesarean section.

She weighed just 1.3kg and spent almost six weeks in the Neonatal Critical Unit due to ongoing feeding issues.

Ocie Ni Dheasmhunaigh was born at Mater Mothers' Hospital with IMAGe syndrome. Photo: Supplied.

Ms Bergin said Ocie had stopped growing a few months after being born and was so unwell she was hospitalised.

With the help of Queensland clinical geneticist and researcher Professor David Coman, Ms Bergin continued to look into the cause of Ocie’s deteriorating health.

“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.”

Ms Bergin said now that her family have a diagnosis, they know Ocie will need ongoing medical care to monitor issues relating to her condition, including medication for her adrenal glands and monitoring of her growth and bone structure.

She might be tiny in stature, but her fight for survival has been short of remarkable, said Ms Bergin.

“Ocie is so tiny I’ve started learning how to sew, with the hope of making her clothes she can wear comfortably,” she said.

“Ocie still wears newborn clothes. She might be a different height or size to toddlers her age, but to everyone she meets she is pure magic.

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