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plagiocephaly (flat head syndrome)

3 replies

torgrosset · 15/11/2005 01:25

Hi! My 4½ month old daughter has plagiocephaly (pronounced play-gee-o-kef-a-lee) also known as flat head syndrome and I am wanting to raise awareness with other parents. My daughter has a severe case & her flat spot is assymetrical by 25mm. It is also affecting her ears, forehead and face.

Plagiocephaly is an increasingly common condition in babies in the UK, whereby the head has become flattened at the back. Great Ormond Street Hospital says that some reports estimate that it affects half of all babies under one. It can be caused in the womb before birth, after birth by stiff neck muscles (torticollis), or by excessively long periods of time spent with the head resting in one position on a firm flat surface.

More cases of plagiocephaly have been seen since the advent of the ?back to sleep? campaign, where parents are advised to place their baby to sleep on its back. This advice is good and is saving lives. However, the advice is not complete and should be supplemented with recommendations that would ensure that plagiocephaly is avoided in the first place ? or improved if it is already present. Simply recommending that babies be carried more, be given regular supervised ?tummy time? during the day, be taken off their backs and not placed against hard surfaces continually, would dramatically reduce the incidence of plagiocephaly in this country.

Where plagiocephaly is suspected or even diagnosed, many midwives, health visitors and GPs consistently advise parents that their babies? heads will round out on their own or that future hair growth will cover the deformity. This is simply not true in many cases and is advice that is unacceptable to the majority of parents.

If there is a plagiocephaly or deformity, and the baby is under six months old, an approach called ?repositioning? can be used. This is where the parents minimise the amount of time that the baby rests on the flat spot of the head.

If a baby is over six months old, or if repositioning has become impossible due to the baby?s increased mobility and strength, then cranial remoulding treatment should be considered. A custom-made helmet gently reshapes the baby?s head as it grows, giving it greater symmetry and a better shape. The baby wears the helmet for 23 hours a day, typically for around 12-16 weeks. The helmet is designed to create a pathway for the baby?s head to grow to a more symmetrical shape as it develops. It does not prevent normal growth from occurring, but simply redirects the growth to the places that need it. It fits snugly on all areas of the head except the flattened part, holding them steady and gently guiding the growth only to the flattened area. Treatment is currently not normally available on NHS & parents have to pay around £2000 for private treatment.

There is an on-line petition being run to try to get the NHS educated & to change their views of plagiocephaly. The link to the petition is www.ipetitions.com/campaigns/plagiocephaly/

If you are worried about your babies head shape, there is a UK support group groups.msn.com/PlagioUK/plagiouk.msnw that offer loads of help & advice.

Please help us to help other babies.

Thank you.

OP posts:
mogwai · 19/11/2005 09:38

Thanks for that information

My 5 month old daughter has a flat spot on the back of her head. It's most noticable when her hair is wet. I hadn't thought about the facial asymettry thing being linked, but both my husband and I had independently noticed that she has one eye and one cheek bigger than the other when we hold her in front of the mirror.

However, aren't all faces asymettrical? Therefore when we hold her up to the mirror, it's just not the view we normally see. I think our eyes are accustomed to seeing her the other way so perhaps they accommodate for any difference in shape/size?

I mentioned this to my health visitor at her 12 week jabs. She had a feel, said "it doesn't seem too bad" and then said there was no point worrying about it because there was no treatment for it anyway.

I don;t know what to think about it really. I looked on some websites and saw all these American kids wearing helmets and wondered whether it's all just a big hoo-har?

moondog · 19/11/2005 10:03

Mogwai..my nephew had similar.
Sister did a lot of reading and thanks to sessions with a physio and an osteopath (and devoting lots of time and energy to carrying out the exercises religiously) the problem has resolved itself.
My nephew also had torticollis (head pulled to one side) which again is now sorted.

Aero · 19/11/2005 10:18

My neice was born with this - the back of her head was flat and still is now. Her hair has grown over and no-one would ever know. She is a normal, happy and intelligent child and at seven years old, it has had no hindering effects on her life whatsoever.
I guess at the time though, they would have been more reassured by other parents whose children had the same condition.

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