Committee
Public Petitions Committee, 17 May 2006
17 May 2006 · S2 · Public Petitions Committee
Item of business
New Petitions
Cranial Abnormalities in Babies (PE960)
Claire McCready:
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Plagiocephaly is a condition that can affect up to 50 per cent of babies under the age of one to some extent. Plagiocephaly causes a baby's head to grow in an abnormal shape, and the number of cases has grown dramatically since we were advised to place our babies on their back to sleep, which has reduced the number of cot deaths. A small percentage of babies suffering from plagiocephaly are born with it. A baby can be born with plagiocephaly because of a lack of amniotic fluid in the womb; a difficult birth; a prolonged time spent in the birth canal; or the application of external force to the baby's head—for example, in the use of forceps.However, most babies who suffer plagiocephaly are not born with the condition and those who develop it do so at around four to eight weeks of age. That is due to a number of factors. They may suffer from torticollis, a condition that tightens the neck muscles. Babies who suffer from torticollis find it almost impossible to move their heads in both directions, so they will always lie facing the same way. Plagiocephaly can also be caused by prolonged pressure on the head from hard surfaces, through sitting in car seats or lying on the floor or on cot mattresses. There are also at-risk groups of babies. Plagiocephaly is three times as common in boys as in girls, and premature babies are prone to the condition because their bones are a lot softer. Additionally, it is more common among babies with low birth weight and those from multiple births.We are asking that babies be checked at birth and at six weeks for signs of plagiocephaly and torticollis. If torticollis is identified, the baby should be treated urgently by a physiotherapist to improve their movement. If signs of plagiocephaly are present, the parents should be given advice on repositioning. Simple repositioning advice can prevent the condition from occurring in the first place. Babies should always be placed to sleep on their back, but parents should ensure that the baby's head is not always resting in the same position. A baby should be placed to sleep with their head facing to the right one night, to the left the next night, and to the centre on the night thereafter. That avoids prolonged pressure on one part of the head. Babies should always have supervised tummy time when they are awake, to avoid any pressure being placed on their heads.We ask that babies with torticollis and plagiocephaly be monitored by health professionals until the matter has been resolved. If the plagiocephaly cannot be relieved by repositioning alone, treatment helmets should be made available free of charge by the national health service. At present, the NHS in Scotland refuses to treat babies with plagiocephaly, although two hospitals in England provide treatment—one in Leeds and one in Bristol. There have also been three cases in Scotland in which private helmet treatment has been refunded.All the paperwork that I have from the Scottish Executive states that the general advice that is given to concerned parents is that they should reposition their baby. That is simply not true. I am in touch with about 50 families throughout Scotland, and not one of them was advised to reposition their baby when they first questioned their wonky head. The majority of parents who question their baby's head shape are told that the hair will grow in and cover the deformity or that it will correct itself in time. Most parents are not even told that the condition has a name. Such lack of advice is unacceptable. There are many children in Scotland over the age of five who are living with misshapen heads, proving that the head shape does not always fix itself.Plagiocephaly is mostly a cosmetic issue. The condition can cause ears to be out of alignment by an inch or more, the forehead to be more prominent and the face to be asymmetrical. If the child needs glasses in later life, it can be almost impossible to get them, as standard glasses will not fit. Parents will also find it almost impossible to find their child a bicycle helmet due to their abnormal head shape. Although there is no medical evidence of plagiocephaly causing any specific side effects in later life, the specialist Dr Blecher has observed that severe cases can affect the alignment of the jaw and teeth. It also goes without saying that uncorrected plagiocephaly can open children up to bullying and teasing, which can, in turn, affect their self-esteem. Not enough studies on plagiocephaly have been carried out in the United Kingdom to rule out any side effects.Private helmet treatment costs around £2,000, and the majority of families who go ahead with the treatment have to fundraise or take out a loan to raise the money. That can be extremely difficult—in some cases, impossible—for families who live in rural areas and families on low incomes with little or no support from extended family or friends. The poor babies then go without the treatment that they desperately need.Cranial remoulding treatment works by the baby wearing a specially designed helmet for 23 hours a day. The helmet holds in place the prominent parts of the skull, channelling the natural growth in the head's circumference into the flat areas, which need to round out. That makes the baby's head more rounded and symmetrical, and it can improve facial symmetry and the alignment of the ears. The length of time for which the helmet must be worn depends on the baby's age and the severity of the deformity. The best age at which to start the treatment is around six months, as babies' growth rate reduces dramatically after their first birthday and treatment can take a lot longer. In the first year of life, a baby's head grows about 12.5cm in circumference. That drops to 2.5cm in year 2 and 1.5cm in year 3. Given the fact that the helmet works by channelling natural head growth, it is clear that the most effective time for treatment is up to one year of age. Some babies have been treated successfully at around 18 months, but the treatment takes a lot longer at that age.We feel that it is unfair that people can have cosmetic surgery on the NHS to pin their ears back, to remove tattoos and to have tummy tucks, breast enlargements or breast reductions while our babies are denied the treatment that they desperately need to give them the best start in life.
In the same item of business
The Convener:
Lab
Our next petition is PE960, by Claire McCready, which calls on the Scottish Parliament to urge the Scottish Executive to ensure that cranial abnormalities of...
Claire McCready:
Plagiocephaly is a condition that can affect up to 50 per cent of babies under the age of one to some extent. Plagiocephaly causes a baby's head to grow in a...
The Convener:
Lab
Thank you for that detailed introduction. Members will be grateful to know a lot more about the subject than they did before.
Mr Gordon:
Lab
Potentially, I could have experience of the issue as, after an interval of 25 years, I have an infant at home. The issue was drawn to our attention by health...
Claire McCready:
If the condition gets worse, a major operation will be required later in life to correct the deformity, whereas helmet treatment does not involve an operatio...
Mr Gordon:
Lab
How old was your son when he was finally referred to a neurosurgeon?
Claire McCready:
At my own request, Robbie was seen by a neurologist a month ago, when he was 11 months old.
John Scott:
Con
I am very concerned that this condition is growing as a result of the back to sleep campaign, which has been successful in eliminating cot deaths. Have you c...
Claire McCready:
With regard to plagiocephaly and brachycephaly, the most valuable thing for parents is advice on repositioning. Because of difficult births through lack of a...
John Scott:
Con
Which NHS boards in Scotland have funded the treatment?
Claire McCready:
The health board in South Lanarkshire, which covers East Kilbride and Motherwell, funded the treatment twice, and I am 90 per cent sure that the health board...
Rosie Kane:
SSP
That was really interesting. I had never heard about this problem, yet what you are saying seems to be common sense. You spoke about early intervention possi...
Claire McCready:
As you know, all babies have mandatory checks performed on them when they are born and again at six weeks of age. Recently, eight-month check-ups have been d...
Rosie Kane:
SSP
Given that, as you said, the moulding process happens very early, from birth or even before birth, do you envisage educating women during pregnancy? As I sai...
Claire McCready:
Totally—100 per cent. We need to work alongside the Scottish Cot Death Trust—sometimes known as SIDS—on the problem. I spoke on the phone to some members of ...
Rosie Kane:
SSP
I want to ask about the treatment with the helmet that you have described. For how long is it required, and at what point? Is it specially moulded for the ch...
Claire McCready:
Yes. Each helmet is made specially. Every child has a different shape of head. No two babies will have the same shape of head, whether or not they have plagi...
Mandy Muir:
We travelled down to Leeds for a scan for Annabel, who is 11 months old.
Claire McCready:
Thirdly, there is a moulding process. I do not have experience of it, but that is used by another supplier down in London. The supplier I use treats babies o...
Mandy Muir:
Annabel's helmet was fitted when she was eight months old, so she is classed as an older baby. At the start of the treatment her head was 15mm misaligned. Sh...
Claire McCready:
Robbie was an older child, too. He was more than nine months old when his helmet was fitted. His head was 15mm misaligned, which meant that one side of his f...
Ms White:
SNP
The costs seem to be high, especially if you have to travel to London. I have a constituency case in which the person paid £1,850 for a helmet as well as hav...
Claire McCready:
Yes. Obviously, checks must also be carried out, because parents might read the information but not adhere to the guidance. The Scottish Cot Death Trust coul...
Ms White:
SNP
I wrote to Lewis Macdonald about the matter. Five children have been fitted with helmets at Yorkhill hospital. NHS Lanarkshire paid for treatment for two chi...
Mandy Muir:
Yes. I had to fundraise for the treatment. Annabel was diagnosed with plagiocephaly when she was about five months old and it took us three months to raise t...
Claire McCready:
We had to fundraise, too. Because Robbie was older we booked the treatment and went down to London—we knew we would have to find the money later. Thankfully ...
Ms White:
SNP
You are saying that if proper antenatal advice and checks were given, you would not have had to go through the distress that you have gone through and paid t...
Claire McCready:
I would not have had to go through the majority of it. It cannot be avoided if babies are born with it, and repositioning might not fix that. For other babie...
Mandy Muir:
The condition was antenatal with my daughter Annabel. She was a breech baby and faced my spine, so her head was stuck under my ribs and it was a bit flat whe...
Ms White:
SNP
If you have other children, they will also have been involved.