It was 2.30am at the Neonatal Intensive Care Unit in Harold Wood Hospital. Anxiously we peered through the sides of the incubator. Inside was our newborn daughter, barely one hour old.

Charlotte Ellena, our fourth child, was born a month premature and she came in a hurry. We had been enjoying a day out with friends at Legoland in Windsor when Helen went into labour. The theme-park nurse was most helpful, but urged us to travel home immediately. Never had we driven so enthusiastically around the M25. Thoughts of an emergency delivery on the hard shoulder held little appeal for either of us. Charlotte arrived in the early hours of Wednesday August 28 1996. She was duly named, held and photographed, but as the midwife attended to her medical needs, murmurings began. It was obvious something was wrong. Her swift removal to the special care baby unit caught us by surprise. After three healthy babies, we were somehow not expecting there to be any problem with the fourth.

It was her skin that gave cause for concern. It appeared tight and brittle, particularly across her chest and tummy. It was something like that of an over-cooked chicken, and looked as though it would crack to the touch. Her eyes were fixed open, the nose and cheeks discoloured. Charlotte's tiny hands and feet were shiny, as though encased in plastic. The duty paediatrician acknowledged that there was a problem, but the words he used made little sense to us at first. On repetition, we understood that she had a condition called collodion membrane ichthyosis.

Charlotte was branded a collodion baby, which meant that she was cocooned in a thick, outer layer of skin that needed to be shed like an emerging butterfly if she was to survive. Infection and dehydration were the greatest dangers at first, so she was kept in a warm, humid incubator. Helen was allowed to hold our little daughter for just a few short moments.

This was so different from anything we had ever previously experienced. Having always opted to have baby's cot by the bedside throughout her post-natal stay in hospital, Helen found the next day or so strangely empty. As the medical staff tended to Charlotte's physical needs, the normal bonding between mother and child was more difficult to establish. It was possible to breast-feed Charlotte, but this had to be fitted in between the frequent creaming and washing of her skin, and the various tests that were being carried out. By midday Thursday Helen was discharged and had the agonising experience of travelling home and leaving her newborn behind. The following few days became a constant round of juggling hospital visits, feeds, the needs of the older children and the search to understand more about our baby's condition.

The first thing we discovered was that information about ichthyosis was scarce. The standard family health books said virtually nothing, and the hospital staff could be seen looking up entries in their own medical textbooks. We had recently connected to the Internet, and a search of the world-wide web yielded some material. In particular, we discovered an American support group, the Foundation for Ichthyosis and Related Skin Types (FIRST). This was to become an invaluable source of information and provided the impetus for our own involvement in the setting up of a similar group in the UK.

An early appointment with Charlotte's consultant, Dr Prasad, proved especially helpful. We learned that ichthyosis is a rare genetic skin disorder. In its more severe forms around one in six hundred thousand children are affected. There is at present no cure. The term 'ichthyosis' is derived from the Greek 'ichthus,' meaning 'fish,' and is used to describe a number of conditions in which the skin can appear thick and scaly. Either too many skin cells are produced, or the millions of dry, dead cells stubbornly refuse to shift. As well as being unsightly, infection becomes more likely. Movement and co-ordination may be inhibited, and other medical complications can occur. The cause is faulty copies of genes that are passed on from one generation to the next. We were told that, in a case such as Charlotte's, both parents would have contributed faulty genetic material. So in every respect we were very much in this together. The chance of us producing an affected child was one in four. As Charlotte is our fourth, at least the statistical probabilities proved correct.

Collodion is the name given to a gluey solution used in photographic processing. With ichthyosis, the 'collodion' label refers to the thick, plastic-like outer coating of skin that needs to be shed. Charlotte's incubation was intended to regulate this process. If it happened too quickly, she would suffer rapid dehydration. The risk of life-threatening infection was high. Once the outer layer of skin had shed, it was just possible that she would be left with nothing more serious than rather dry skin. There was a far greater probability, however, that her skin would remain excessively dry, requiring a life-long regime of creams and ointments, with the inevitable practical and social implications. Several changes of clothes a day, and a somewhat different appearance from other children, were predicted.

We were grateful for the frankness of Charlotte's consultant. It would have been so frustrating to have been presented with only partial explanations. We wanted to know what we were dealing with. In addition to our own anxieties, our families and church were keen to be kept informed, and to be able to assist and to pray for us.