13-month-old Lucia Deerson is undergoing major surgery on her skull, so her brain can develop properly.Julie Akmacic, and Peter Deerson, and their children Lucia 13-months, and Max 2-years-old.Photo: Jamila ToderasJulie Akmacic and her husband Peter Deerson noticed something wasn’t quite right with Lucy’s skull when she was just a few weeks old.
But it took eight months for her to be diagnosed with craniosynostosis, a condition where a baby’s skull fuses together, limiting the brain from growing normally.
Now, the Canberra family begins the new year preparing for their baby to have major surgery to remodel and reconstruct her skull, at just 13 months old.
“We had a gut feeling that there was something wrong when she was a couple of weeks old,” Ms Akmacic said.
Usually when a baby is born, the plates of the skull are not completely fused together, allowing the skull to expand as the baby’s brain grows. In Lucy’s case, however, her skull is fused together, meaning her brain has grown out at her forehead and at the back of her head, causing her head to have more of a football shape, Ms Akmacic said.
“In Lucy’s case the skull joints are fused so it’s restricting the growth of her brain. So without the surgery she could be damaged, go blind, have learning difficulties, or behavioural problems,” she said.
“She could be not only mentally impaired but physically impaired. The brain is looking for a way to grow so she would look physically deformed as she grows older.”
Around one in 2500 babies has the condition, which develops at about 20 weeks’ gestation. Doctors don’t know what causes it.
“We took Lucy to an allied health professional when she was two weeks old to see what they thought and continued to take her until she was eight months old,” Ms Akmacic said.
“They agreed her head was an odd shape but despite noticing overlapping sutures [skull bone joints] they didn’t seem worried and told us her head should improve over time – something we now know would never be the case without surgery.
“Following a development check with a maternal and child health nurse, a recommended visit to a paediatrician and a good look at her skull through a CT scan, the diagnosis was evident – Lucy’s sagittal suture was complete fused and the fontanelle was already closed.”
The Deerson family still has a wait for the surgery. Lucy is due to have the life-changing procedure on March 6.
Ms Akmacic and Lucy will travel to Adelaide, where they will be looked after by the n Craniofacial Unit. Mr Deerson and their older son Max, who is two, will remain at home.
“She would have a very difficult life without the surgery,” Ms Akmacic said.
The surgery is called a cranial vault removal, which involves creating a zig-zag shape opening from ear to ear, and removing the suture that runs from the front of her skull to the back. The surgeon will also create gaps in the side of her skull, “like sun rays”. This will allow Lucy’s brain to revert to its correct shape, and for her brain and skull to continue to grow normally afterwards.
Ms Akmacic is trying to raise awareness about the condition, due to the lack of knowledge that led to a delay in Lucy’s diagnosis and because there is very little information available to the family when the diagnosis is made.
“I think it’s really important to raise awareness locally because my understanding is there’s a few families locally as well,” she said.
“When I found out that my baby had this condition I had no idea what to do.”
Ms Akmacic has started a blog and found support through an n Facebook group with other families that have a child with craniosynostosis. She has met with another local family who have also had a baby with the condition.
“It’s a big deal, and this is why it’s so important that we’re all looking at our baby’s heads and their soft spots.”