Real Life Special – All in the Head

e almost never have to go out looking for a story – in fact we’re honoured and a little humbled, by the sheer number of amazing families who contact us each season to ask if they can share their experiences; and we know from the response that we get to our regular real life features that our readers appreciate them too.

Whether it’s a story highlighting the incredible work done by a particular neo-natal unit, or a tale of one family’s journey while dealing with a particular condition, our hope is that by sharing their stories we not only provide an insight into the huge range of experiences that parents of babies and small children can undergo but also a valuable source of information and reassurance for parents who are going through something similar.

So, this Spring and Summer, we are bringing you a Real Life Special – three stories each season documenting the amazing, and inspirational, experiences of our readers and their children.
Firstly, for many of the parents that we feature in real life stories the medical treatment that their children undergo is a matter of urgency – life and death, even.

But the issues raised are different when the treatment is for something which is primarily cosmetic – and everyone in the NHS is telling you not to worry about it.

This was the situation that Andrea Massingham Kansal faced when she realised that her baby daughter’s head was not symmetrical. “We first noticed that Amara had a flattening on the right side of her head when she was about six weeks old. She had a strong preference to lie on her right side and always favoured turning and lying that way.”

Andrea consulted her GP, but was told not to worry. “We were given the standard response – that it’s quite a common condition and that there have been a number of such cases since the back-to-sleep campaign started. Amara is blessed to have lots of thick hair and we were told that this would be a benefit as her hair would ‘cover and hide’ any flatness!”

Andrea and her husband Shashank followed the advice that they were given by NHS doctors to reposition Amara when she was sleeping but they were still concerned about the situation. “I would get up in the night to reposition her head,” says Andrea, “but the next time I checked she would be lying on the right side again.”

Andrea and Shashank tried various other remedies including making a mustard seed pillow – a traditional method used in the Indian subcontinent, where Shashank’s family is from – to cradle the head and offer support; and consulting a cranial osteopath.
They also went back to their GP who referred them to a consultant but the official advice remained that the condition was purely aesthetic and to try repositioning Amara.

After three months of trying the various remedies the improvement to Amara’s skull shape was negligible and the osteopath recommended that Andrea and Shashank consider helmet therapy – a treatment, not available on the NHS, where the child wears a specially made helmet for 23 hours a day in order to correct the shape of their head. “We’d researched online and we were aware of the treatment,” explains Andrea. “My mother and I were keen to start it immediately but Shashank needed convincing – he was concerned about the lack of information and research about the longer term effects on children who undergo the therapy.”

However, shortly afterwards, on his way to work, Shashank saw a group of about twenty children and noticed that several of them had abnormally shaped heads. “He phoned me whilst still on the train,” says Andrea, “and said we should get in touch with the private clinics immediately.”

Andrea and Shashank made appointments at two central London treatment centres. “Of the two, the first appeared to be more of a business rather than a medical treatment facility and definitely lacked empathy. They were more focused on us making full payment in advance, that day, and promoting their selection of patterned and coloured helmets, rather than the actual details of how the babies respond to such treatment and Amara’s individual case.”

“The staff at the second centre, Ahead4Babies, were extremely helpful and reassuring. We met with a maxillofacial surgeon who observed Amara and took measurements. He was very knowledgeable and explained at length the pros and cons of undergoing treatment. The staff at this centre suggested that we go home and think it all through.”

At £2000 the treatment is not cheap, and it wasn’t covered by Shashank’s company health insurance policy but he and Andrea decided that it would be money well spent. “At this stage the asymmetry of Amara’s head was at 14mm. It was prominently visible, at least to our eyes. After two very stressful nights we decided to go ahead with the treatment and informed the clinic.”

A helmet for Amara, based on her head measurements, was custom made in Germany and ten days later, the family went back to the clinic for a fitting. “This appointment lasted approximately two hours and the doctor had to make several adjustments to the helmet to ensure that it was sitting correctly on Amara’s head. We were shown how to fit the helmet properly and how to clean it. We were advised to keep a check that no rashes or redness developed where the helmet was fitted and to dress Amara in lighter clothing than usual as she would retain more body heat wearing the helmet.” 

Although Amara was not initially too enamoured with her new headgear, within a few days she had become accustomed to it and life for the family continued as normal. “People generally didn’t make any comment about Amara’s helmet,” says Andrea, though sometimes children would point and ask their parents why she was wearing it. I would explain that it was to help Amara’s head grow into a perfect shape like theirs. On only a few occasions, when I was tired and felt I would rather avoid any questions, did I remove the helmet before going to the supermarket. I never saw or met any other children wearing helmets except, of course, at the clinic.”

Amara had the helmet for four months and during this time she visited the London clinic five times for the helmet to be adjusted and to have measurements taken. “Within the first two months, progress was dramatic – the asymmetry had been reduced from 14mm to 6mm,” says Andrea. By the time Amara had finished the treatment, her asymmetry was at an imperceptible 2mm and her parents were delighted.

“We’re very happy with the results and we feel relieved that we went ahead with the treatment. Despite the reassurances of doctors and consultants, we didn’t want to regret, in years to come, not having helped Amara to have a perfect head shape. We would like her to have a normal childhood and to avoid any bullying or feelings of being different that having an abnormal head shape could have brought.”
Next, a tale of how the latest medical equipment saved a new-born baby’s life.