When Alice was born at 34 weeks, the doctors delivered devastating news to her mum and dad – their newborn baby girl had just 20 minutes to live. Barry and Rebecca had known their daughter was at risk since their 20-week scan had picked up problems, with serious implications for their unborn baby’s safety. But they could never have imagined the difficult road that lay ahead of them.
Alice was born at 34 weeks and when the tiny baby took her first breath and cried, her parents and the medical team could not have been more relieved. But their joy soon turned to panic.
“Within minutes of her birth she needed an emergency tracheotomy. Then she took a turn for the worse and they said we were going to lose her in 20 minutes,” said Mum, Rebecca. Alice pulled through, but the consultant told her parents she had two collapsed lungs and flat brain waves. This meant Alice potentially had permanent brain damage and a decision might need to be taken over whether to switch off her life support. For the following months, little Alice constantly battled against the odds with her life hanging in the balance. The family had an emergency Christening for her and were referred to Tŷ Hafan for end of life care. She was diagnosed with Goldenhar Syndrome - a rare congenital condition.
Alice’s condition is life-long and potentially life-limiting and she also has difficulties with her hearing, sight and swallowing. But with support from Tŷ Hafan, she and her family have continued to thrive.
“Alice is nearly four now and she’s extraordinary.” said Rebecca. “In January, she started mainstream nursery, where she rules the roost and wherever she goes she has a little crowd of friends who all want to look after her and play with her. We’ve just had her first parents evening and the other day I attended her first assembly. She stood on the stage and sang with her classmates. It was such an emotional moment. We never thought we would see that day.”