Dear Editor

As it emanates from two of the UK’s major craniofacial units it is disappointing to see the missed opportunity that the paper, ‘Management of Plagiocephaly’ by Saeed, Wall and Dhariwal presents and it is saddening that it reiterates previously stated positions without offering anything new in the debate on cranial remoulding. The paper selectively quotes previous research, interprets data to support a pre-formulated argument and offers anecdotal evidence from newspaper articles as fact and valid reference. My European and American colleagues are astounded at the UK medical community’s attitude on head shape deformities and are open mouthed when hearing what parents who come to see us have to say about their doctor’s advice.

My interest is that I manage a clinic in Leeds offering cranial remoulding (or ‘helmet’) therapy. I take the UK clinical lead for our organisation on cranial remoulding and treatment is offered privately to parents simply because they cannot access treatment through their local hospital.

Sadly, it is not unusual for us to have infants who had perfectly normal head shapes at birth, present to us with asymmetries of over 20mm and head widths significantly over 100% of the length (normal is 78%). These infants have severe head shape deformities and a referral to a CF unit for reassurance will not resolve the problem, no matter how much it is dismissed. Prevention is obviously preferred and improved early advice would prevent many of these deformities but to simply ignore them is negligent. Many parents of older children, having followed their doctor’s advice subsequently correspond with me ask for treatment which we are unable to start as they are now too old to treat. Despite the assertion in the paper, correction does not spontaneously occur after the sutures have fused at age 24 months and I’d be really interested to understand the mechanism by which the authors explain that it will.

Our experience is that if aggressive repositioning is not entered into at the time of first notice, usually at 8 weeks, the head shape will not resolve to any great extent and probably will worsen. Advice on head positioning, “tummy time” and torticollis management should be given at birth with an emphasis on placing the baby on the back to sleep. If there is still a significant plagiocephaly by the age of 5 to 6 months when an infant should be rolling independently and sitting unsupported, then cranial remoulding treatment should be considered.

The paper identifies that a ‘small number’ of patients were managed conservatively and spontaneously self corrected. In a peer review paper published in such a journal, this surely cannot be accepted without comment. How many were in the study, at what age were they on referral and end of monitoring, what was the severity of deformity before and after monitoring and how was this quantified, what advice was given to effect the changes and were the parents as happy with the result as the authors?

There are glaring deficits in range of quoted research. Where were the two Graham studies on plagiocephaly and brachycephaly which found a significant difference in outcomes between repositioning and orthotic intervention? Where is the discussion on Kordestani; Developmental Issues, Siatkowski; Visual Field Problems, Balan; Auditory Response Delays, Clarren; Developmental Concerns, Panchal; Developmental Issues; Plank; 11 of 13 untreated infants showed no improvement or Bialocerkowski's review of the literature which did a far better job than was attempted here?

Recently published papers exploring the neural development of infants with plagiocephaly (Kordestani, Collet, Clarren) were mentioned but glossed past with no comment. Our anecdotal evidence suggests that these infants may experience some motor or neural delay, but it is beyond our scope to explore this. Where are the papers from the authors investigating these issues?

The paper quotes Hutchinson and extrapolates the findings into the conclusion that head shapes naturally resolve. I would argue that this is a misreading of the paper which identified that of the infants who had a skull deformity at 12 months, 46% still have a severe skull deformity at age 2. So much for natural resolution in these cases! The other 54% don’t resolve to zero but only cross an arbitrary line which is still a significant deformity. Hutchinson states that at 24 months, 3% (of an initial 200 infants) had a severe deformity. This is 1 in 30, so at least one in each school class, probably with as many as two or three. I would argue that the lifelong psychosocial implications of this will be of greater significance than wearing a helmet in a loving protected environment for a few months in early infancy?

The paper calls for a randomised controlled trial. I fully agree and as the authors know we have been active in offering our patient data, either as a historically treated group or for a randomised control trial, but my invitation has been met with no takers for whatever reason.

The few downsides reported in the paper seem to have been gleaned from newspaper articles which as we know are a reliable source! These are contact dermatitis which is usually no more severe than nappy rash, and pressure sores which can be likened to a simple pressure area from a new pair of shoes. If correct management is instituted from the start, these problems are minor and should be put into context rather than being seen as reasons for not treating. The same should be said for parental payment if the Trusts are not willing to fund. This treatment is recognised in many other countries and although it may not be available on the NHS, it is effective and invariably brings about positive results as evidenced in the Graham papers which the authors did not incorporate.

Finally, we come to the advice that the major UK CF centres do not endorse cranial remoulding treatment. In fact, two UK CF centres do offer provision of an untested type of orthosis without apparent treatment protocols or quantified outcomes. Eventually, many parents who have tried these orthoses come to us for verifiable, structured treatment of their infants.

I would argue that these normal healthy infants have an advice induced deformity which is being neglected, with information on and access to treatment being denied for dogmatic reasons which may ultimately have budgetary rather than clinical origins. I’d also suggest that UK infants are being damaged by the absence of treatment and may be subject to additional problems as a result of the advice, which is neither scientific nor objective, provided in this paper.

Stephen Mottram MBAPO Clinical Specialist Orthotist and Cranial Remoulding Specialist