My daughter was born a normal healthy child, but 1 thing I noticed was the look on the doctors faces when they spotted the birthmark on her right arm, everyone that saw it would pause and study it closely. Something told me this was no normal mark from their reactions, I was right. At 2 weeks her arm started to change colour, it became an intense red colour, the midwife said ‘nothing to worry about, just a strawberry birthmark. At 6 weeks her mark had grown so big I couldn’t get sleeves over it, after a trip to the doctors she was refered to hospital for it to be checked. At 8 weeks her appointment came around & by this time the skin had just started to split , the diagnosis was ‘ULCERATED HAEMANGIOMA’ A condition in where a strawberry birth mark ulcerates, a very rare occurrence!
From then on we were in and out of hospital for months on end, my poor baby’s arm had burst, there were holes appearing and she would cry in agony. Then came the hard part, I was the one that had to dress it morning & night, this continued until she was 6 months! By 7 months her arm was so bad her arm muscle was actually visable, a flesh eating bug had ate away her flesh. I can’t imagine the agony she must have been in. We started her on a very high dose steroid treatment to try & shrink it, it made her so poorly and her face swelled up. She didn’t grow an inch for 7 months, it stunted her growth and damaged her immune system. She wasn’t allowed around children, people had to steralise their hands before they could touch her and at 9 months old, we nearly lost her.
Just a normal illness, gastroenteritis and yet in the space of just 12 hours, she was lifeless, she slipped unconscious in the doctors room that morning and she was rushed to hospital in an ambulance on oxygen. The most scariest moment of my life!!!
We were in hospital for a week and managed to make it out just in time for her first Christmas. Finally we were making progress, a new treatment had just been discovered accidentally, so unfortunately we were the guinea pigs, but the risks of the steroids were worse, so we went for it. At this point we were trying to save our daughters arm and the risk of her developing diabetes or osteoparosis from the steroids.
By her 1st birthday, result, the new medication was working so we could start downing the steroids until she was completely off them. We couldn’t have been happier. Finally at the age of 14 months she was finally allowed to play with kids, to play in the garden, to go to the park, to do what every other child did. It was alien to her, but she soon go into the swing of socialising, me however had to listern to the whispers, the points and stares from ignorant people.
Yes she had a huge scar down her whole fore arm, yes it looked like a burn scar, but the moment an adult said to her ‘oh dear, has your mummy been silly and had an accident’ I was mortified, she thought I had had an accident with a cup of tea. Well, from that day I decided I would stick 2 fingers up to the ignorant people out there and flaunt my daughers beautiful ‘butterfly’ (as her friend calls it) If it didn’t bother my daughter than it didn’t bother me.
She will never remember what happened to her, I will carry the mental scars for her & i’m so glad I can do that for her so she doesn’t have too…I just wish I could have done the same for the pain. That experience has made us into the people we are today…2 years old & I wouldn’t change a thing about her, she’s perfect in everyway..scars and all! I’m so very proud xxx