VBF Establishes European Chapter

Visit VBF Europe!

Imogen was born on September 12th 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 ad 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 was 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 to 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 was 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 of 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.