Reggie’s cranial helmet treatment story at LOC Kingston

Reggie’s first few weeks

When Reggie was born, he was delivered by Caesarean section after his mum became unwell. During delivery, Forceps had to be used to assist his birth. After delivery he was taken to intensive care, where he stayed for around seven days.

When his parents visited him, his mother noticed that his head shape did not look quite as they expected, but they assumed that the reason for this was because forceps were used to assist with his delivery. His mother asked a nurse whether his head shape was likely to improve, but she was not really given any advice or information.

During the consultant’s ward round, the consultant asked Reggie’s parents whether they had noticed his head shape. They said they had, and they asked whether it would improve. The consultant explained that the reason for Reggie head shape could potentially be craniosynostosis and that he had contacted Great Ormond Street Hospital (GOSH) for advice.

While Reggie was in hospital, he had an X-ray and following this, a formal referral was made to GOSH. The family were seen by GOSH at around 12 weeks. At first, there was some uncertainty over his diagnosis. But there was discussion whether Reggie possibly had metopic craniosynostosis. The consultant explained the different types of craniosynostosis a baby can have and that metopic craniosynostosis is where the suture along the forehead closes too early. This causes a pointed or triangular forehead and closely set eyes.

Reggie’s parents also had concerns regarding the shape at the back of his head. However, during a consultation with a consultant maxillofacial surgeon, they were told that Reggie’s main issue was at the front of his head and they confirmed metopic craniosynostosis. The consultant explained that he required surgery and there were two surgical options. One was to wait until Reggie was around 18 months old and carry out full head surgery. The second which minimally invasive endoscopic strip craniectomy which was usually carried out under 4-6 months, and this was then followed by helmeting therapy.

By now Reggie was 12 weeks old and for Reggie’s parents, the priority was making the right decision for their son. During those early weeks, they had noticed that he did not seem to be progressing as they had expected. Reggie has an older sister, and when they compared his early development with hers, they felt there were differences. He was not tracking well with his eyes and would sometimes scream in distress for no obvious reason. Their focus was on choosing the treatment they felt would give him the best possible outcome.

Choosing the right treatment for Reggie

After been given the options of treatment Reggie’s parents decided to go ahead with early minimally less invasive surgery, followed by helmet therapy. This decision needed to be made within a set timeframe, as six months is the cut-off point for this type of surgery. The surgeon explained that the earlier Reggie had surgery, the better the outcome was likely to be.

When Reggie was three and a half months old, he was seen in the Plagiocephaly Clinic at the London Orthotic Consultancy(LOC) by Jo Drake, Head of Plagiocephaly and Craniosynostosis Therapy Specialist. Jo explained that helmet treatment is far more effective when a child is younger and still growing rapidly, but as the child grows and the cranial sutures close treatment can take longer when a child is older.

Everyone, including Reggie’s parents, were keen for surgery to take place as soon as possible and surgery was planned. Unfortunately, around Christmas time, Reggie became unwell with a cold and chest infection, so the surgery was not able to go ahead. At five months old, Reggie had successful surgery at GOSH.

A week after surgery, the family came were seen by Jo, where Reggie had a 3D cranial and a week later, he returned for fitting his helmet journey began. The family had regular reviews at GOSH but his post-surgical progress and helmet treatment was undertaken at LOC with Jo. Reggie’s mum commented:

“Jo is such an expert in the shape of his head.”

She also described the change after surgery as being “like a lightbulb”, explaining that within a week Reggie had started smiling. Although he remains behind in some areas, he is making steady progress and reaching his milestones which has been very pleasing for his parents. At first, Reggie’s mum was worried about helmet treatment and whether he would tolerate wearing it. However, he adjusted well. His parents were very keen to achieve the best possible outcome for Reggie and followed the Jo’s advice and treatment plan throughout.

Throughout Reggie’s journey, the family felt supported and reassured. During surgery, the different specialists in theatre introduced themselves one by one and explained their role in looking after him. The family also found it helpful to speak with Jo both before and after surgery about the cranial helmet treatment and what to expect.

Reggie had three helmets during his treatment while he was under Jo’s care and his helmet journey last around 18months.

At the start of treatment, Jo gave Reggie’s mum her number in case she had any questions. She also created a group chat so Reggie’s parents could send photos or raise anything they were worried or unsure about between appointments. Reggie’s mum really valued how available Jo made herself. If Reggie needed to be seen, Jo would always try to arrange an appointment that worked for the family, despite them living an hour and a half away from the Kingston clinic.

At each review, Reggie’s parents could see the changes in his head shape, which made the journey to Kingston worthwhile. In the early stages especially, they noticed the changes happening quickly. The before and end scans showed a significant improvement in Reggie’s head shape. His mum described the change as “phenomenal”.

Reggie’s parents were particularly surprised by the difference in the shape of his face and eyes, and felt that, after surgery and helmet treatment, he almost did not look like the same child. Looking back, Reggie’s mum said they were so pleased they chose the less invasive surgery and helmet treatment, as it allowed his head shape to grow and improve quickly over time. For the family, seeing Reggie’s progress and the visible changes throughout treatment made the whole journey worthwhile.

Considering treatment for your baby?

If you’re concerned about your baby’s head shape, we’re here to help. You can complete our free flat head photo assessment form or contact us to book a consultation with one of our experienced orthotists.