A MOTHER struggling to fund treatment for her baby son’s serious medical condition says it is “cruel” it is not paid for by the NHS.
Rachel Hughes’ five-month-old son Jaden was diagnosed with a severe form of plagiocephaly or ‘flat-head syndrome’, meaning part of his skull is misshapen.
Miss Hughes, from Shotton, thought a special helmet – which must be worn 23-hours-a-day – could help reshape Jaden’s skull.
The treatment is not routinely available on the NHS due to a lack of clinical evidence to support its use and Miss Hughes said she is now paying the £2,000 cost herself.
She said finding the money for the treatment – which she was informed of during consultations with doctors at the Countess of Chester Hospital in Chester – has been tough.
“Parents are put in an impossible situation,” she said. “It’s cruel to know about a treatment that could help, but isn’t funded.”
Ian Harvey, medical director at the Countess of Chester Hospital NHS Foundation Trust, said his paediatric team would welcome the opportunity for a further discussion with the family about their concerns. Jaden’s condition can be caused during or after birth and when pressure is applied unequally to different areas of the soft skull tissue.
The condition is not uncommon in newborns and often corrects itself early on.
But more severe imbalances can continue into childhood and be associated with spinal problems as the child grows.
It may also contribute to other problems such as glue ear, headaches, migraines, teething discomfort, jaw and dental problems.
When she first noticed Jaden’s head was asymmetrical, Miss Hughes, 31, was unconcerned.
Her elder son’s head was misshapen when he was born and had righted itself as many do.
“I thought the same thing would happen with Jaden, that it would go back on its own but it kept getting worse and I knew it wasn’t right,” she said.
“Jaden was diagnosed at the Countess of Chester Hospital with a severe form of the plagiocephaly.”
On a scale of one to 20 – with 20 being the most severe – Jaden was diagnosed at 19, Miss Hughes said.
Miss Hughes said she was told by Jaden’s doctor the condition might still correct itself, but also about a special helmet that could help.
The lightweight helmets – or cranial orthoses – are worn for 23 hours a day and are individually moulded to a baby’s head shape, with space left around the flat spot so growth is channelled into the area which needs to “round out”.
The helmet is adapted as the baby’s head grows during twice monthly visits to a clinic, with treatment generally completed after about six months.
Miss Hughes was able to arrange a payment plan, allowing her to pay for Jaden’s treatment gradually.
But she said finding the cash was a struggle.
She said it was unfair other children with the condition were being deprived of the help.
“They say the condition can correct itself in some cases, but what about the cases it doesn’t?,” she said.
“Every time I put the helmet back on Jaden, I think about all the other mums – the ones who are told their child has this condition and want the treatment but can’t afford it.”
Mr Harvey said: “Our doctors make clinical judgments and recommendations every day based on their knowledge and understanding of best practice and taking into account the needs of the individual patient.
“Our paediatric team would welcome the opportunity for a further discussion with the family so we can talk through these concerns, answer their questions and discuss the options available for treatment.”