Mum's worry at flat head syndrome

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After baby Phoebe was diagnosed with flat head syndrome her mum was determined to seek a cure. Amy Willis reports.

When mother-of-one Jessica Coombs noticed her baby’s head was flattening on one side, she like any mother was worried something was wrong with her baby girl.

Jessica, 32, who lives in Oxford Road, Marlow, with her husband Nicholas, 38, also noticed their three-month-old daughter Phoebe was only sleeping on one side and her face had become asymmetrical.

“It was upsetting to see,” said Jessica. “The flattening of the head had pushed everything forward on one side of her face.”

A visit to the GP diagnosed flat head syndrome or Plagiocephaly – a condition where a baby’s soft skull becomes misshapen as a result of prolonged pressure on one side.

The condition does not affect brain development or function.

The GP also said the muscles on one side of Phoebe’s neck had shortened, a condition called Torticollis. The muscle shortening had caused Phoebe’s face to become asymmetrical as well as restricting head movement.

But there was nothing the GP could do on the NHS as both conditions are deemed ‘cosmetic’ and are therefore not covered. The GP simply suggested the problem may correct itself naturally.

Faced with the possibility of their daughter’s head remaining permanently misshapen, Jessica and Nicholas turned to the internet for advice.

Jessica said: “After looking on the internet I realised that I wasn’t going through this alone. There were lots of mums and dads across the country whose babies were in treatment.”

After researching the condition Jessica and Nicholas found the it could be easily cured with a special type of helmet which remolds the head to the shape it should be. The treatment costs around £2,500.

Jessica said: “We debated about whether or not to make an appointment at the Technology in Motion from Ossur clinic, but I knew it would be something I would regret not doing, rather than regret doing.
“I didn’t want Phoebe to come home from school in the future and say ‘why didn’t you do something about it?’”

Jessica and Nicholas eventually agreed to the treatment and Phoebe wore the helmet for 23 hours a day from the age of four months until 10 months. Jessica said: “I was a bit worried at first and the first night was difficult, but she accepted it very well and it just became part of the routine.”

Phoebe has now had the helmet removed and her head and face are back to normal. But her parents are frustrated more advice and treatment is not available on the NHS.

Jessica, who is pregnant with her second child, said: “It is quite a common problem so at the very least doctors should advise parents about what they can do and what treatment is available. Parents shouldn’t have to turn to the internet for advice. There should be some sort of a service available on the NHS.”

Flat head syndrome affects around one in three babies to some degree and one in 30 severely suffer from the condition. Although it is considered to be cosmetic, it is thought to also cause problems with the eyes, ears and jaw, and migraines.