This is Sam’s story he has a Nasal Tip Haemangioma

We first noticed that Sam's nose was a little blue at the end when he was about one month old.  I mentioned it to the doctor at his 6 week check and she immediately told me that he had a haemangioma. She explained that there was nothing that could be done and that we would just have to sit it out.  Funnily enough, I had seen a documentary on TV some time ago about a little girl with an upper lip and nasal tip H, so I kind of new what she was talking about from the start.  It was quite a shock though, but the doctor did not seem overly concerned about it and advised a follow-on appointment in 3 months.

After doing a bit of internet research, my husband and I were in a state of panic, realising how aggressive these things can be.  We found out that there were treatment options available and that we needed to see a specialist pretty quickly.  As Sam's H was on his nose, it was unclear at that stage whether it would have an impact on his breathing and we were pretty scared.  I went back to the doctors first thing the following morning, wanting a referral to a specialist.  Our GP was just great and set us up with an appointment with a dermatologist at our local hospital for a week later.

Our initital appointment with the dermatologist was a little disappointing as our high hopes were disappointed when he said that he had not seen a nasal tip H at this stage of development before.  His specialism was laser treatment which is very effective for superficial Hs but not for the deep kind, as in Sam's case.  He went through the treatment options with us though, and after consulting with his colleagues, advised that nature would eventually take care of it.  Although we really appreciated discussing Sam's case with him, we did not feel comfortable with this approach, as it did not correspond to the advice that we were reading about on the internet; where the general consensus seemed to be that nasal tip Hs generally do not involute to a cosmetically acceptable level and that surgery is recommended between the ages of 1-3 years.

So we carried on with our internet research and discovered that there is a Vascular Anomalies Clinic at the Birmingham Children's Hospital.  At the same time we found the fabulous VBF sites and message boards, which have been a real life-line.  As NHS appointments can involve a long waiting list, we initially saw the doctor at BCH on a private basis.  She did not tell us anything new about Sam's H, but we found it very reassuring that she seemed very familiar with his type of H and had seen several at that stage before.  She confirmed that surgery would be an option for Sam which would be carried out before school-going age.  This advice was in line with what we had read and we were comforted by the fact that we had found a doctor at a specialist clinic who would take care of Sam.

Since then, Miss Waters has absorbed Sam into her NHS list and we have seen her twice.  Just sitting in the waiting-room and seeing the other children with Hs running around is a great experience.  Sam is lucky in that his H is slow-growing and does not affect his breathing, so the next time we will go back will be when he is 2 years old and that is when he will have the proper assessment for surgery.  We also continue to see the dermatologist; he is very interested in Sam's case and has looked into potential new treatments for Sam, such as Imiquimod.  We see him on a quarterly basis and really appreciate being able to discuss any changes in Sam's H with him.