Benjamin's story

Benjamin was born on 23rd March 2005, he was 6 months old when he was finally diagnosed with a venous malformation

At our 6 week check, the doctor was concerned that his bruising had not yet gone and so referred us to a consultant at Hinchingbrooke Hospital. A few weeks later we visited this consultant who told us that it was not a bruise and he did not know what it was. At this point I was shocked and confused and obviously quite upset. He then asked if we wanted to be referred to a colleague of his at Addenbrookes Hospital. We jumped at the chance.

When Benjamin was 6 months old we finally got to see Dr Tariq Ahmad who immediately diagnosed Benjamin with a venous malformation. He explained everything in detail and advised that we wait and see how his birthmark develops. We visited every 6 months until Benjamin was 3. At this point his lip had swollen considerably, causing him discomfort. Since birth, we had not been able to leave the house without people asking "what's he done to his face". However now Ben was older, they asked him directly and his confidence decreased. Tariq advised that we go ahead with surgery to try and kill off some of the veins that were causing his lip to swell. He underwent a 2 hour operation involving sclerotheraphy, this also including tiny stitches to strangulate the veins. Benjamin's recovery was awful, he couldn't eat or drink properly for weeks. This surgery was repeated 9 months later and they also cut his lip and took out some of the big veins. This took him almost a year to recover properly. He lost an awful lot of weight and became very angry.

Unfortunately Benjamins lip swelled up again after a year to the same size it was previous to surgery, which can happen and is unknown at the time of surgery. When visiting Tariq again a year on, he talked to us about the possibility of visiting Tobian Muir at The James Cook University Hospital, Middlesbrough. He had heard that Mr Muir was carrying out a breakthrough treatment in birthmarks using a drug called Bleomycin, originally used as a cancer treatment.

We visited him in July last year and Benjamin started treatment in September. It is a day treatment and the drug is injected into his lip under GA. This takes seconds to do and the recovery is instant. There is no discomfort and Benjamin can eat and drink as normal. Benjamin has had 7 treatments so far and Mr Muir has now said there will only be one more around his lip area as he is struggling to find any more blocked vessels to inject into. Benjamin's lip no longer swells and has hopefully stopped growing. The next course of injections will take place under his eye as that has started to bulge slightly. We can only hope that it will have the same effect as it has had on his lip.