...I saw a dermatologist when Hannah was five weeks old. By then, the swelling had pushed her nose and mouth sideways and her right eye upwards. The hospital appointment was traumatic. A lot of people have this impression of a hospital as a haven, because at the hospital, people understand and are empathetic and kind to you. For me, this was not the case. The receptionist had never seen anything like Hannah's condition before, and people stopped in their tracks to take a look.

I expected the nurses to be supportive immediately, but they avoided me like the plague as I sat in the waiting room. It wasn't that they were mean, nasty or uncaring - it was just that they didn't know what to say. And so to avoid what they probably felt would be an embarrassing situation, they skirted around me. I felt ten times worse. One would walk past me, taking a quick peek as she walked behind me, and another would walk past to pin a piece of paper onto the notice-board near to me. No one would meet my eye, but they all had a good look at my baby, one by one.

We were referred to the Occupational Therapy department for a "supporting garment". To my horror, I realised that this would involve Hannah wearing a full face mask around the clock to help deter swelling, unless she was being washed. I decided that this mask was unsuitable from both a safety and medical viewpoint, and the very idea of it repulsed me too. Later my views about its appropriateness were confirmed by experts. I believe this episode emphasises the importance of questioning practice both as a professional and as a patient.

The consultant said that the condition would probably disappear in time, but organised an ultrasound scan of the face nevertheless. When I met the radiologist, there was at last a turning point. She immediately reacted to Hannah's face directly and said "Do you know what this is? I've never seen anything like it in my life!" I warmed to her honesty. She was crying. I knew she had recently had a baby herself. She added "I think I need some help with this." I replied "So do I!"

So at her request, Hannah had an emergency MRI scan. The following week, the results came back. Unfortunately, they showed that the tumour was being fed by the carotid artery, the main artery to the brain. It was thought that it may grow towards the brain, and the worst case scenario would be that she could go blind, or become paralysed on one side of the face, have speech difficulties and even need a tracheostomy or a feeding tube.

I announced to the puzzled consultant that I had had enough. I wanted some expertise immediately. This came in the form of the team at Great Ormond Street Hospital. Her management was discussed fully with us - steroid therapy and interferon injections...

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