Baby born with flat head needs £4,500 helmet to save him from skull surgery
A baby might have to undergo reconstructive skull surgery after doctors were ‘too slow’ to treat a deteriorating case of flat head syndrome.
When Henry was diagnosed with plagiocephaly, or flat head syndrome, medics said he would grow out of it like many infants. But parents Alexandra Cafferty and Christopher Brown said the 15-month-old’s condition has got ‘worse and worse’ causing his head to grow towards the left and his eye to get smaller.
Alexandra, 27, told Metro.co.uk their only hope of straightening his skull is by wearing a cranial helmet 20 hours a day for six months. However, they are not available on the NHS and come at a high cost of £4,500, including physiotherapy, which the parents are struggling to afford.
If he doesn’t get the helmet his condition will likely worsen, causing problems such as misaligned facial features, jaw and eyes. The mother, from Bury, Greater Manchester, said the soft spot on his head is closing and if they act don’t act soon they will miss their opportunity.
‘If it closes, his head could continue to grow in the same direction to the left, then it’s possible he’ll need surgery which will leave him with a big scar on his skull stretching from ear to ear,’ said Alexandra, who has launched a GoFundMe to pay for the treatment.
‘If we’d have known from the start we would have been able to save up but with this time frame we don’t have that money lying around.
‘It’s put a lot of stress on us. It’s more the upset of if Henry needed surgery we could be signing his life away.
‘There’s never a guarantee with surgery, there are so many risks. We just don’t want that for him.’
The mother said she and partner Christopher, 45, who works in finance, are frustrated their first born is now facing major surgery due to doctors dismissing it as something he would grow out of.
According to the NHS, plagiocephaly affects one in five babies and the condition isn’t usually of concern as it ‘will often improve by itself over time’.
As a young baby’s skull is relatively soft, it can change shape if there is constant pressure on the back of their head. However, the NHS website said there is minimal evidence to suggest the helmets work.
‘At around four weeks I noticed his head was a different size to other babies but they kept sending me home and saying there was nothing wrong,’ said Alexandra.
‘I knew something wasn’t right but the doctors kept saying it’ll be fine – wait until he’s sitting up. He sat up at four months.
‘But as the months went on it got worse and worse. His eye got smaller on one side. It’s like he had pressure on the left side of his face.
‘I have been putting my foot down about this for almost 15 months now. It’s ridiculous. If they had diagnosed him then he wouldn’t need the surgery.’
Alexandra later took him to see an eye specialist where he underwent a series of ‘invasive’ tests but she said they put it down to a muscular problem.
It wasn’t until they saw a paediatrician that he suggested Henry try a cranial helmet as their last hope before surgery but were shocked it wasn’t available on the NHS.
Due to Henry’s age and the size of his head, there is a now chance he will get head sores and cysts as his skull is not as malleable against the pressure of the helmet.
The couple are willing to take the risk to stop him needing major surgery and said the procedure has ‘worked wonders’ for friends’ children.
The £4,500 they are attempting to raise would also cover physiotherapy which would be needed while wearing the helmet as the pressure can stiffen neck muscles.
Alexandra said: ‘Henry is my baby and I want him to live a happy, healthy pain-free life.’
You can find the fundraiser here.
NHS guidelines on plagiocephaly treatment:
NHS guidance on helmets and headbands
There are specially designed helmets and headbands that some people claim can help improve the shape of a baby’s skull as they grow. These devices apply pressure to ‘bulging’ parts of the skull and relieve pressure from other parts, potentially allowing growth in the flatter areas.
Treatment is started when the child’s skull is still soft, usually at around 5 or 6 months old, and the device is worn almost continuously (up to 23 hours a day) for several months.
But these helmets and headbands generally aren’t recommended because:
– There isn’t clear evidence to suggest they work
– They often cause problems such as skin irritation and rashes
– They’re expensive, typically costing around £2,000
– Your baby will need to be checked every few weeks to monitor their head growth and make any necessary adjustments
– They may be uncomfortable and distressing for your baby
Other advice:
The shape of your baby’s head should improve naturally over time as their skull develops and they start moving their head, rolling around and crawling.
To take pressure off the flattened part of your baby’s head:
– Give your baby time on their tummy during the day – encourage them to try new positions during play time, but make sure they always sleep on their back as this is safest
– Switch your baby between a sloping chair, a sling and a flat surface – this ensures there isn’t constant pressure on one part of their head
– Change the position of toys and mobiles in their cot – this will encourage your baby to turn their head on to the non-flattened side
– Alternate the side you hold your baby when feeding and carrying
– Reduce the time your baby spends lying on a firm flat surface, such as car seats and prams – try using a sling or front carrier when practical