Isla was born facially disfigured. Now her mother, Anna MacInnes, has started a support group for other parents whose children look different

I don’t really know where to start but I guess when my daughter was born is a good enough place. Isla was born seven weeks premature by emergency section and weighed in at 4lbs. She was in the neonatal and special nursery for three weeks. During this time I noticed a small pink mark by her left eye. I thought she had been lying on that side for too long. It was so faint and small I didn’t really think anything of it. But about a week later I decided to ask one of the doctors about it. I was told it was a birthmark and it was nothing to worry about. How wrong that doctor was.

We came home from hospital when Isla was four weeks old. The mark rapidly became darker and the eyelid began to swell. At six weeks her left eye was totally covered by this swollen red eyelid and she couldn’t open it. So we went to our GP who referred us to the local hospital. After another month we got an appointment at the hospital to see an opthimologist. All this time the birthmark had continued to grow at an alarming rate.

That’s when the comments started. Everytime I went out of my house the reactions would start. The looks of disgust and ‘OH MY GOD’ rang in my ears, day after day. There were the ‘Oh, poor thing – has she hurt herself?’ and the ‘Look, elephant child’ comments. Mostly it was just the long stares and pointing of fingers. Some people looked at me as if I had caused the mark.

Sometimes I just wanted to hide away. Sometimes I was so fed up that if someone even looked twice I would snap at them. It all got so hard to bear. At the hospital I learned more about my daughters birthmark. It’s called a strawberry haemangioma. The usual pattern means that it would grow rapidly for months before it would start to shrink. This could take up to 12 years depending on the size. There was no option for surgery as the haemangioma stem is in her brain. To try and cut this out would risk bleeding in the brain which could be fatal. Secondly, as the birthmark was over the eyelid, the next problem was Isla’s sight development. The first advice I was given was that Isla was blind in that eye and that there was nothing that could be done. I didn’t believe this and after much stomping around we found a specialist in Manchester and finally got correct advice and treatment.

The treatment suggested was steroid injections, which involved Isla having a general anathestic and being injected straight into the eyelid. This would cause the lid to swell and become very painful but within days the eyelid and the haemangioma began to reduce in size.

She is now eighteen months and although she’s still having treatment, the doctors are pretty sure Isla’s eyesight can be saved. Isla is now having total occlusion patching of her good eye to try and make the other eye work. She has to wear the patch all day except for two hours where she can use both eyes. This is to be done for three weeks. After this, she will get more steroid injections and an operation to correct the squint she has developed. She will need some cosmetic surgery later on to improve the colouring and appearance of the skin and she’ll always need glasses. Apart from this, the future looks good.

I truly feel that if I hadn’t had access to medical information, through my job as a Research Nurse, I would have accepted the first doctor’s advice. I spent many hours on the Internet researching medical papers, which led me to believe that there were other options for treatment. I know Isla’s eyesight was worth fighting for.

This is when I decided I wanted to help other mothers whose children look different, to find support and accurate information. I searched the net time and time again but sadly came to the same conclusion. There was no support for parents in my area and if I wanted to do something I would have to do it myself. Luckily, I met up with Dr Rennie, a Consultant opthamologist who had seen Isla before he retired. He was also interested in setting something up. He too had first-hand experience as the parent of a child that looked facially different. So we got together and started the ball rolling. The AFDA (Aberdeen Facial Disfigurement Association) was on its way. The idea of the group is to give parents access to accurate advice/support that otherwise they might not have. Talking to parents, we have discovered that no matter what the facial difference is, the reactions from people are the same and the same support is needed.

The first meeting of AFDA was on the 8th of Nov 2000. The association is based in Aberdeen and we hope to have monthly meetings. The contact numbers for AFDA are:
Anna MacInnes: 07773484770 or 01224 876007 (after 6pm)
E-mail: anna.macinnes@abdn.ac.uk
Alistair Rennie: 01358 720442
E-mail: alistairrennie@hotmail.com

Anna MacInnes originally posted some of this information on the ivillage UK board: Parenting in the UK.