Stuart and Michelle’s daughter, Millie, was born with a large birthmark that restricted her breathing. Here, Michelle talks about how Millie responded to a pioneering treatment, traditionally used for heart conditions.
More than just a birthmark
"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 the
Dermatology unit at Great Ormond Street Hospital when she was just 17 days old.
"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.
"The treatment has 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 after the treatment 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.
