Craniosynostosis Awareness Month: Aria's Journey

September is Craniosynostosis Awareness Month. Here is 6-month-old Aria's journey with the rare craniofacial condition known as Apert Syndrome:

What is Craniosynostosis?

Craniosynostosis is a condition where one or more of the gaps in an infant's skull (sutures) fuses prematurely, which can affect cranial growth, skull development and head shape.

It affects approximately 1 in 2500 births, and treatment involves surgical correction.

'Raising awareness for this condition is so important as there are a number of treatment options available to parents that can be offered depending on age of the child at diagnosis. Early recognition allows empowerment of parental choice.'

Lorraine Baillie, Craniofacial CNS (Clinical Nurse Specialist)

The Craniofacial Service in Glasgow provides assessment and treatment to all children throughout Scotland with a variety of craniofacial conditions.

It is one of five National Service centres throughout the UK.

They are a multi-disciplinary team of Cons Neurosurgeon, Cons Maxillofacial Surgeons, Geneticist, Ophthalmologist, Orthotist, Clinical Coordinator and Nurse specialist.

The team accept referrals from all over Scotland and have a concise referral pathway for health professionals on RHC website to assist referrers with this process.  

Glasgow Children's Hospital Charity is proud to support the service by holding a restricted fund specifically for the craniofacial service and assisting in awareness activities.

Aria's Journey

6-month-old Aria was born with Apert Syndrome, a rare genetic disorder affecting just 1 in 165,000 births.

Apert Syndrome causes fusion of the skull, hands, and feet bones and is characterized by deformities of the skull, face, teeth, and limbs.

Aria's Mum, Nicola, told us:

'Aria was referred to the Gentetics Team at the Royal Hospital for Children in Glasgow who were so helpful at explaining everything to us.'

'Due to Aria's syndrome and the craniofacial bone fusing too early prior to release, we were told that there could possibly be a delay in development which is any parent's biggest fear.'

'Aria is still very young, but so far she is meeting all of her milestones and excelling!'

ARIA'S MUM, NICOLA

'Aria is receiving the new helmet therapy treatment which we feel lucky to have received along with all treatments and consultants we are under.'

'Aria had her sutures removed at 11 weeks old and her first hand release at 16 weeks.'

'Children with Apert Syndrome are absolute warriors! It’s important to us to raise awareness about her condition so that other parents and children can understand.'

ARIA'S MUM, NICOLA

'I cannot thank the team at Glasgow enough - Mr Sangra, Mr Halsaid, Lorraine Baillie and Mel Dixon (orthotics) in particular have all been outstanding on Aria's journey for her craniofacial issues.'