Our daughter Millie was born with a large birthmark that covered the lower part of her face, neck and part of her chest. She began to have problems with feeding and was transferred to Great Ormond Street Hospital (GOSH) at only 17 days old to see the specialists on the Dermatology unit.
More than just a birthmark
It quickly became apparent that it was more than just a birthmark. Millie was diagnosed with a benign tumour of the blood vessels called a haemangioma. It was growing inside her airway and causing her problems breathing. She was immediately put on high dose steroids to try and shrink the tumour.
Only three days later her breathing had severely worsened. She was rushed to intensive care for eight days before being transferred back to Peter Pan Ward to continue her treatment. During her stay at GOSH Millie had a number of operations, including a tracheostomy, which creates an artificial airway to help her breathe.
After six months she was finally stable enough to take home. With help from the ward nurses and a tracheostomy nurse specialist, we were taught how to look after her away from hospital although one of the hardest things was not being able to hear her laugh or cry.
A brand new treatment
When Millie’s condition deteriorated again, only weeks later, she was rushed back to hospital. The dermatology team mentioned a new and untried treatment, using propranolol, a beta-blocker traditionally used to treat heart conditions. Millie was the first child to be treated for a haemangioma at GOSH with this new medicine and the results were amazing.
It’s completely changed her life. The tumour was really sore and she never liked to be touched or picked up because it gave her so much pain. But then we were able to kiss and cuddle her, and within a few days she was able to move her head from side to side.
Despite various attempts, the hospital had been unable to remove her tracheostomy. But in April 2010, Millie had an operation to reconstruct her airway using cartilage from her rib cage. Her operation was followed by a long stay in intensive care and some complications but overall it was a success.
Our little fighter
Over time, the haemangioma has reduced in size and faded in colour. Millie has been left with scarring on her face, neck and ears, but she is a lively, happy and loud little girl. She’s a little fighter. Right from the beginning she was not going to let this thing beat her and we are just so proud of everything she has had to overcome.
This is, in no way, the end of Millie’s journey at Great Ormond Street Hospital. She still has some speech problems because of the damage to her mouth, but she can basically do everything a normal three-year-old can do. I sometimes worry about how people will react to her when she starts school as my instinct is to protect her. As far as I’m concerned she is beautiful. We are just glad she has been given the chance to live her life like any other little girl.
She still has lots of laser and plastic surgery to come to help correct the damage done by the haemangioma, but thanks to the amazing doctors, nurses and play staff there, Millie has a future for which we will be forever grateful.
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