History

Nic's Story

Imogen was born on September 12, 2003. She was a beautiful baby and we had no reason to believe that the next ten months of her life was going to be a rollercoaster of emotions with on average two visits a month to various hospitals. This is my story and why my husband Lyndon and I decided to start VBF-Europe.

Imogen was born a week early and was delivered by forceps. My waters had broken for more than twenty four hours so she caught a virus which meant she had to spend a week in the special baby care unit. After numerous tests which included a lumber punch she had the all clear and returned home with us a week later. We were all so excited that things were finally back to normal and we could start to be a family.

Whilst Imogen was in hospital she had two pressure marks on her left side of her face. We asked the doctors and they said that they would fade in time just like her stork marks on her forehead, so we didn’t think too much of it and carried on enjoying our little girl.

Everything was great for a couple of weeks but then one day whilst feeding her I noticed on her lip in the corner of her mouth a red mark which looked like a blister. I showed my midwife that afternoon. She said it was probably a blister from her feeding bottle. I found this difficult to accept due to the location of the mark. Over the next few days the (blister) got bigger and the (pressure marks) got redder and spread over half the side of her face. We were so worried and didn’t know what to do or who to turn to for help. The local GP was concerned but said it was a birthmark and that it would go usually after a few years. She however wrote a letter for Imogen to see the dermatologist but said that due to her age they probably wouldn’t be able to do much until she was a little older.

Being told this was bad enough but within a week the birthmark formed a lump under the skin on the side of her face. It was unbelievable how quickly this grew. We paid privately to see a paediatrician. This I can say with hand on heart was our first and most important step that we took to help our little girl. He looked at her and reassured us that it was a haemangioma and that the swelling should not get much worse. He said he wanted to see her again in six weeks time.

In the meantime the swelling did get worse and before we knew it the left side of her face was the size of a pear. Her eye was pulled due to the swelling, she had no definition to her nose and her ear was that swollen it became part of her cheek. The National Health Service dermatologist sent us a letter to say they wanted to see Imogen. Two weeks later on her first visit to them they said we’ll keep an eye on her and that they wanted to see her the following week. The following week came and they said the same thing on so on for about five weeks. Every week we were hopeful that they would say something reassuring but they never did they just kept saying we’ll see her next week. This wasn’t because they didn’t care it was because they did not how to deal with this sort of thing.

I went to the library but could not find any books on the subject. I went on the internet but due to my lack of knowledge the information I could get hold of only made me feel worse as they showed extreme cases of children with multiple Haemangiomas.

Finally the six weeks came around and we had to re visit the paediatrician that we had initially paid privately to see. This time and ever since he has seen her on the National Health Service. He took one look at Imogen and said he was very concerned and did not expect the swelling to be as bad. He referred her to Great Ormond Street hospital in London and managed to have her seen within the week. In the meantime he admitted her into our local hospital to start her on a course of steroids. She also had to have her heart monitored to make sure it was not working too hard and had a MRI scan which confirmed it was in her ear canal but not her ear drum and down her throat as far as her larynx. Although her breathing and eating were not affected we were convinced she must have been uncomfortable even though we were told she was not.

That coming week Imogen was in three different hospitals. At the end of the week we went to Great Ormond Street hospital where we were told that it was not malignant and showed us other cases of children with similar markings.

Over the next few months it was a rollercoaster, some weeks the swelling looked worse than others. Her facial features were slowly coming back with every visit to the paediatrician and Great Ormond Street and finally we could start to see light at the end of the tunnel.

Imogen has now been off her steroids for a good few months and even though the swelling is still there, it is much smaller and the redness is starting to fade. We realise we have a long way to go and she will probably need treatment at a later date, but we feel as though we have finally won the battle.

We don’t look at her anymore and see a birthmark, probably because we now know she is not in any danger so we carry on with life as normal. All we see is our beautiful baby and realise just how lucky we are to have her.

We see people looking and sometimes even staring, but they don’t mean anything nasty by it they just are not use to seeing that sort of thing every day which is why we wanted to start the Charity/support group not only to help others in the same situation but to try and educate society on what birthmarks are.

Debbie's Story

Charlotte was born 11 December 2003 at 36 weeks gestation. When she was born there was a little red mark on her left cheek which we were initially told was a bruise as a result of the forceps. We didn’t mind at the time because it was her special mark; we called it her beauty spot. When we were discharged, the paediatrician said it was a birthmark and to monitor it for signs of growth or changes in shape.

It was a shock for us to see it double, triple and quadruple in size over the coming months and at 4 months old it started to ulcerate badly. Each day we would have to change her cot bedding and clothing as it would be blood-stained. We also noticed she wouldn’t sleep on her left side so we assumed she was in pain. No-one gave us any advice. Our GP told us to treat it with Vaseline. A Dermatologist we saw just warned us that it would grow a lot more due to the large blue feeder veins around it but gave no advice on treatment, and at this point we were getting to the end of our tether. After much Internet research, I joined a US Support Group and quickly realised that I was not alone and that ulcerations were common. More importantly though, I realised that there WAS treatment for Charlotte’s haemangioma and it should have been recommended sooner. I researched UK specialists and asked my GP to refer me to the Birthmark Unit at Great Ormond Street Hospital where Charlotte had laser surgery to stop the ulcerations. The staff there were wonderful in helping me with the dressing changes; we couldn’t have coped without their fantastic support.

In the meantime, I had done a lot of research on global experts in treatment of haemangiomas and I got in touch with Dr Waner from New York. It was as if our prayers had been answered when he told me that Charlotte’s case was ‘simple’ and that he could remove the haemangioma surgically. We knew this was the right choice for us, as we had already been told by every doctor we had seen that Charlotte would need corrective surgery in the future. The ulcerations meant that her skin would be scarred quite badly and that she would have residual skin, hence a surgical procedure would be necessary. In our case, it was a matter of having surgery now or in a few years time and if we did it now then the skin would have more time to heal before she was of school-age. If the prognosis had been less clear, ie the haemangioma may have disappeared on its own with no scarring, then obviously our course of action would have been a different one.

When Charlotte was 7 months old, Dr Waner excised the haemangioma in Berlin. The surgery lasted just over an hour and she had to stay in hospital overnight and have a check-up two days later before we flew back to the UK. We couldn’t believe the results; all the haemangioma had gone and she was left with one thin scar. He really is an amazing surgeon who touches peoples lives in such a significant way. We still have some way to go with regards the healing process and we may require some scar improvement work in the future, but we are so happy with the results and so happy that we found some information and support when we most needed it for our beautiful baby girl.