Tom’s Story

It was a big decision for me to have a third baby as I have type 1 diabetes which puts pregnancy into the “high risk” category, but David and I wanted another baby. At 36 weeks my doctor was very concerned about extreme maternal antibody levels and planned a semi- emergency caesarean section. Unfortunately David was in England on business but got straight on a plane. My mother came with me for the birth on Saturday 1st July 1995. The paediatrician said my baby son had a birthmark from knees to navel and I didn’t think too much about it. Tom was taken to the special care nursery which is standard procedure for babies of diabetic women. Later the paediatrician came to see me and said my baby had a giant congenital bathing trunk nevus which was unrelated to my diabetes. The following day David came from the airport and together we went to the special care nursery to see Tom. We were alone with our son and un-swaddled him to check out his birthmark - a mid-wife had warned us that it was very big. When we saw Tom we were shocked and very upset. I cried a lot of tears over the next few days and I had a lot of guilt. The usual round of inquisitive doctors came through and one young doctor asked me how I was coping with such a rare and huge birthmark – it was nice of him to ask even though it was a bit of a silly question! Tom was a delightful baby and a super gorgeous toddler who made us laugh constantly. I was fairly protective of Tom’s nevus and mostly kept it covered. We saw a variety of doctors who gave us conflicting advice and information. Tom kept seeing the paediatrician until he was about 12 and he still sees the original dermatologist and surgeon who saw him days after he was born. Tom had some “tidy up” surgery on his back at 4 and 8 months of age which we all dealt with well. Due to the size of Tom’s nevus removal wasn’t suggested. When Tom hit puberty two large lipomas (fatty tissue) grew gradually from his hips and were removed separately when they became very uncomfortable and unsightly. Tom has also struggled with other problems including speech and learning. Over the years Tom has had the odd mean comment from boys at school but he’s coped amazingly well, only needing a few sessions with a psychologist to help him during his teenage years. His siblings and extended family around him haven’t treated him any differently which is mostly good but sometimes I know Tom would have liked a bit of extra sympathy. Tom is now 18, has finished school, has a part-time job, has a very nice girlfriend (who is ok with his nevus) and is a well-adjusted young man with a bright future. Tom is a special person who has a deep sense of caring for others. He is rather shy but has a great sense of humour once he gets to know you. If I had one magical wish it would be to swap his nevus for normal breathable skin as Tom suffers so much in the hot weather. Tom is slowly becoming more at ease in his own skin. David and I are very proud of Tom and wish him every success in his adult life.

By Jenny Roberts (Tom’s Mum) Published 2014

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