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This petition is being created by parents of babies suffering from plagiocephaly, and is aimed primarily at the NHS Scotland and Scottish Executive. We are planning on submitting this petition to the Scottish Parliament towards the end of May 2006. We are asking that the following 4 points are considered.
1. The NHS modify their current legislation to include mandatory evaluation of babies (at birth and 6 week check up) for plagiocephaly and torticollis. Should torticollis be present, the baby should then be treated by a physiotherapist urgently. Should signs of plagiocephaly be present then parents should be advised of repositioning techniques. These techniques should include:-
Supervised tummy time when baby is awake
Ensuring that the baby does not spend prolonged time with his/her head resting against hard surfaces (eg. car seat, buggy, play gymn on floor).
When baby is placed to sleep on his/her back (as advised by SIDS "Back to Sleep" leaflet). Parents should be advised to ensure that baby's head is placed to the left one night, right the next then centre. This is to avoid prolonged pressure on one part of the skull.
2. The Scottish Executive/NHS update their current leaflet on Cot Death "Back to Sleep" to include information on Plagiocephaly and preventative measures (repositioning).
3. Funds should be made available for a medical trial to take place with unresolved cases of Plagiocephaly (babies around 6 months of age) using cranial remoulding treatment (helmet). The helmet is individually moulded to the baby’s exact head shape via a short casting session, and is worn for 23 hours a day. The helmet fits snugly to the unaffected area and leaves space around the flat spot so that any growth is channelled into the area which needs to 'round out'. Therefore, leaving baby with a more symmetrical head shape and facial asymmetry is also improved.
4. When the trial is completed and proven successful. Cranial remoulding treatment (helmets) should then be provided free of charge from NHS Scotland where necessary.
Should points 1 & 2 be adhered to, this in turn will reduce the number of cases dramatically. Therefore, cranial remoulding (helmet treatment) should in turn be unnecessary in the majority of cases.
What is Plagiocephaly?
Plagiocephaly is a disorder in which the back or one side of a baby’s head is flattened. The number of babies suffering from plagiocephaly has dramatically increased since the “Back to Sleep” campaign was introduced. Great Ormond Street Hospital estimates that plagiocephaly affects 50% of babies under the age of one to some extent. It can be caused by lack of amniotic fluid in the womb during pregnancy, but more commonly after birth, (positional plagiocephaly). The main causes of positional plagiocephaly are torticollis (stiffening of neck muscles) and prolonged periods of time spent resting with baby’s head in one position on a firm, flat surface. Because baby’s heads are soft to allow for the incredible brain growth that occurs in the first year of life, they are susceptible to being “moulded” into a flat, abnormal shape.
What is Torticollis?
Torticollis is a condition that causes the tightening of muscles in the neck. Babies affected by torticollis find it almost impossible to turn their head in both directions. This in turn can be a huge contributing factor towards positional plagiocephaly a baby suffering from torticollis will always lie with their head facing the same side.
What advice is currently given to parents?
Where plagiocephaly is suspected or even diagnosed, many Health Visitors, GPs, Midwives and Paediatricians consistently advise parents that the head will round out in time, or the child’s hair will grow in hiding the deformity and misalignment of ears. This advice is not true in all cases and is unacceptable to the majority of parents. Rarely are parents advised to reposition their baby or even told that the condition has a name. |
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http://www.headstart4babies.co... (the only U.K. charity who can arranges for babies with plagiocephaly to be treated for the condition by cranial remoulding (helmet) treatment. They also give out free advise to worried parents and can if required put parents in touch with other families in their area).
torticolliskids.org (information on torticollis)
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My name is Claire McCready and I am the mother of Robbie (10 months) who suffers from Plagiocephaly and is currently undergoing helmet treatment. At present the treatment is not available on the NHS and no private clinics are located in Scotland.
Robbie's treatment cost £1700 through http://www.headstart4babies.co... (the only charity in the U.K. to give out free advise to parents on Plagiocephaly and help arrange helmet treatment if required). Though this petition has been created independently by concerned parents of babies suffering from plagiocephaly. |
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