Craniosynostosis Awareness Month: Hope and Kharis' Story

This Craniosynostosis awareness month, we are honoured to share twins Hope and Kharis’ story. The girls were born in 2025, and after initial scans identified Hope’s condition, it was later discovered that both Hope and Kharis had Craniosynostosis.

Hear how the family have been supported by Glasgow Children's Hospital Charity and the Royal Hospital for Children's Craniofacial Specialists, in the words of the twins’ Mum, Vikki:

Hope and Kharis’ Hospital Journeys

Twins Kharis and Hope were born in 2025. Their Mum, Vikki, had a very high-risk pregnancy and was consistently monitored as her babies were monochorionic-diamniotic. This meant the twins were identical and had their own sacs, but shared a placenta.

The twins were born at Forth Valley Royal Hospital, where Hope was immediately referred to the Paediatric Craniofacial Team at the Royal Hospital for Children, Glasgow. A few weeks later Kharis was also referred to the same team.

Vikki shares:

“This was a very daunting experience for us, and we had no idea what to expect.  However, my anxieties were quickly diminished when we met the department’s Clinical Nurse Specialist, Lorraine Baillie.”

The twins were both diagnosed with Craniosynostosis, with Hope having a more complex case requiring an endoscopic operation for the ‘Mercedes-Benz’ pattern of Craniosynostosis, meaning she needed three sutures opened which resembled the Mercedes Benz car logo. Hope was the first baby in the UK to undergo this procedure.

Hope and Kharis both underwent their procedures on the same day. By late afternoon the following day, the girls were both back to drinking their milk and smiling away. A week after their operation, the family returned to the children’s hospital to meet with the Orthotics team, so that Hope and Kharis could receive their helmets. They will continue to wear these helmets as part of their recovery.

The girls are now eight weeks on from their surgery and are doing well. Hope and Kharis will continue to be seen by the Orthotics team until they are around the age of sixteen.

“Each and every member of staff were so friendly and supportive.

The time we spent within the children’s hospital, and the care my girls received, went above and beyond my expectations and I was confident they were in the safest of hands.”

Vikki, Hope and Kharis’ Mum

How The Charity and Craniofacial Team Helped

“Prior to the girl’s diagnosis, I had never even heard of Craniosynostosis, so it’s been an intense journey.”

Thankfully, Glasgow Children’s Hospital Charity were there to help. The family were signposted to our Family Support Team, who offer advice to parents who have children in hospital. The team can also provide information about claiming expenses back surrounding food and travel, easing financial worries for families. Vikki was also invited along to the MediCinema, providing a welcomed distraction and break from the intensity of the ward.

Vikki is also very thankful for the incredible support she and her family received from Clinical Nurse Specialist, Lorraine Baillie.

“Lorraine was extremely knowledgeable and was able to answer all my questions, queries and worries.”

Vikki, Hope and kharis' mum

Lorraine was there throughout every step of the journey, ensuring the wellbeing of all family members. She offered support through ward tours and answered any questions and concerns Vikki had along the way.

Raising Awareness

Craniosynostosis is a rare condition in which the sutures of a foetus’ skull close too early, leading to skull growth issues. Treatment often involves surgical correction.

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

The team accept referrals from all over Scotland with a referral pathway (add link) for health professionals to assist referrers with this process.

Glasgow Children’s Hospital Charity is proud to support the craniofacial service and assist in awareness activities.

“It’s extremely important to be raising awareness for Craniosynostosis as it’s such a rare condition and generally not well known.”

Vikki, Hope and Kharis’ Mum