*PLEASE READ THIS* - IT COULD HELP YOUR BABY!!!

[torgrosset]

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.

The frustrating thing about this is that it is really simple to measure whether the deformity is mild, moderate or severe. The majority of the NHS refuses even to acknowledge it as an issue - because, I guess, of the cost of funding it for every child who has some asymmetry of the skull.

If they were to simply limit treatment to severe cases who were severe at say, 5 months then they would be treating the cases where the deformity will cause functional problems.

My own GP refused even to glance at my baby's head. It turned out my son had severe plagio and went into a helmet privately at 7 months. He made some progress but unfortunately for him it was too late and he is still clinically severe (at age 4) although looks a lot better than he did. I have lobbied the department of health on the issue via my MP but to no avail.

I repeat - it is really easy to say which babies have it severely. If you are worried, go to your HV or GP and insist on a measurement. The asymmetry measurement is normally held to be 12mm - the brachio measurement I think varies due to age.

I.e. 12 mm plus = severe.

In my culture (asian) we are very aware of this condition and babies are put down on different sides in order to get the head to form a round shape. My mum was always nagging me to be aware of flat head and put dd1 down on her sides but, beacause I was just a nervous first time mum I was terrified of doing this (ever mindful of Back to sleep campaign) and she ended up with quite a flat head at the back.

I agree with the OP more should be done to make parents aware that this could happen if babies spend too much time on their back, the problem does not sort itself out.
For dd2 I used a special pillow with a hole in the middle and now for dc3 I have got a Lilla Kuddis pillow which helps but does not completely prevent flat head. The only thing that prevents it is to change the sides of the heads in contact with firm surfaces.