en cy cy en en en en en en en lt en en en de su cy de de cy de de az de es cy cy hu cy jbo cy en cy cy cy cy cy cy cy de cy en cy ca cy cy cy fr hbs_lat ca su en en en en fy en cy en cy ta cy cy en cy en en cy su cy da en en cy en cy cy cy cy en es en fr cs cy de cy cy en en fr en en cy cy cy en en en en en cy cy fy de de cy en da en cy en en en en en cy cy en en en en en en en en en en en en en en en en en en en lt en en en en en en en en en en en en su cy de de cy de de az de es cy cy hu cy jbo cy en cy cy cy cy cy cy cy de cy en cy ca cy cy cy fr hbs_lat ca su en en en en fy en cy en cy ta cy cy en cy en en en en en en en en en en en en en en en en en en en cy cy cy cy cy cy en ca cy en en en en nl en en cy cy fy de de cy cy en en da en cy en en en cy en en en en en en en en en pl cy en lt ast it en en en en en cy su en cy cy cy su hbs_lat cy it lt cy cy fy de de en en en en en fa en cy en en en en en cy cs
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home > newyddion > straeon teuluol > alice's story
We were referred to Tŷ Hafan for end of life care. Now look at her – she’s extraordinary.
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.”
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Tŷ Hafan - the hospice for children in Wales
Registered Head Office: Hayes Road, Sully, Penarth, CF64 5XX. A Charitable Company Limited by Guarantee. Registered in Wales: No: 3077406 Registered Charity No: 1047912
Mae'r wefan hon yn defnyddio cwcis er mwyn sicrhau eich bod yn cael y profiad gorau yn ddefnyddio ein gwefan. Drwy barhau tybiwn eich caniatâd i ddefnyddio'r cwcis fel y nodir yn ein polisi preifatrwydd a cwcis