Tiny Queensland Toddler's 'Life-Changing' Surgery

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 Ni Dheasmhunaigh

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.”

Ocie Ni Dheasmhunaigh

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)

15 Comments

- - radiofreak said
  - 11 Jan 2025
    9:43 am
What a beautiful profound miracle! Praying that further surgeries is successful and for the strength of the parents. May this child grow to become a resilient responsible adult. I have a son with ADHD and autism but this is nothing in comparison to the journey that these parents are going through

- - Mum.of.little.loves said
  - 11 Jan 2025
    12:43 am
What a journey ahead for this family and what an absolute miracle child, I hope that they have everything go smoothly for her surgery and she comes out stronger than ever! Ao much strength to mum and dad to get through this surgery and to all for their hurdles that they face.

- - jenniw said
  - 03 Jan 2025
    9:53 am
What a journey with such determination! I wish Ocie and her parents all the very best.

- - BellaB said
  - 01 Jan 2025
    6:44 pm
I wish the best for her and her family in the coming years. Good luck!

- - mom111059 said
  - 01 Jan 2025
    12:05 pm
Gorgeous little girl. Obviously very loved by her family. I wish her all the best.

- - mom101628 said
  - 28 Dec 2024
    11:31 pm
What a beautiful little girl – her parents are obviously so in love with their daughter that the news of her condition must be terrible to them. I have lived with hip dysplasia for many years, and that can be dealt with but the growth restriction syndrome must have come as a huge shock to these lovely parents. Do hope things finally work out.

- - BellaB said
  - 19 Dec 2024
    6:43 pm
A gorgeous little girl facing some big challenges – best wishes to her and her family.

- - tessie said
  - 19 Dec 2024
    2:18 pm
She has a gorgeous smile and, as the saying goes, all good things come in small packages. Ocie is the best package to have. She may be small but I bet she’s just a dynamo when it comes to loving her parents. I wish her and her parents a very Happy Christmas and look forward to seeing what the future has in store for this little angel

- - mom160270 said
  - 17 Dec 2024
    9:08 pm
I wish this family all the very best.

- - TraceyGail said
  - 17 Dec 2024
    11:27 am
What a gorgeous and happy little girl, her smile is amazing. Life is cruel in what it throws at people sometimes and it seems so unfair. I hope the operation is a success and she can get moving and up and about soon. All the best for a wonderful christmas & future together.

- - sars_angelchik said
  - 17 Dec 2024
    9:25 am
Wow, that poor family have a long road ahead of them. But I’m sure this little cutie will have learned to fight from a very young age. I hope she heals up well and will be taking those first steps soon. It’s going to be the first step of a lifelong battle by the sounds.

- - Ellen said
  - 17 Dec 2024
    9:22 am
Aw bless, she’s so tiny and cute ! I have never heard of this condition before, but thank God we live in this day and age and in a country where proffesional medical care is of a high standard and she has a great medical team around her. I hope & pray the treatment is successful and that she not only will be able to walk but run 🙂

- - mom486197 said
  - 17 Dec 2024
    8:43 am
Wow what a story, I am so glad this little girl survived, she truely is a little miracle. This poor parents and what they went through with their gorgeous little girl must have been so scary and stressful. It is great to see she is progressing and will get to enjoy Christmas with the family.

- - mom93821 said
  - 17 Dec 2024
    5:05 am
Thank you for sharing this story about this incredible family. It is absolutely wonderful that the medical community and professionals can support this precious child and family with this condition. Wishing them a wonderful cast free Christmas; it will no doubt be a very special Christmas for all of the family.

- - ChiWren said
  - 16 Dec 2024
    9:11 pm
Oh my goodness, what a beautiful little girl. I’m always so amazed with modern medicine when I read stories like this. What an incredibly strong family. Wishing the best for them, and that everything goes even better than planned with Ocie’s healing. She’ll be running around the house, keeping mum and dad on their toes in no time.