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.