Alexia was born prematurely on 31 August 2010 four weeks earlier than expected. Proud Mum Lizzie had been monitored during her pregnancy and given extra scans as doctors had been concerned that the baby was very small.
Alexia weighed only 3lb 7oz at birth and spent the first 11 months of her life in hospital as she was diagnosed with Coffin Siris syndrome (a rare genetic disorder which causes developmental delays), Pierre-Robin Sequence (lower set ears and jaw), she has a small ASD on her heart, (Atrial Sept Defect, also known as a hole in the heart) and Subglottic Stenosis, a narrowing of the subglottic airway. Due to the narrowing of her airways she underwent surgery and had a tracheotomy fitted in September 2010 (a tube inserted into an opening in the neck to help you breathe without using your nose or mouth).
When she was one-year old, due to her complex medical needs her parents were told about Bluebell Wood Children’s Hospice. Lizzie said they were very apprehensive at first as they didn’t know anything about children’s hospices and were unsure what to expect, however they soon fell in love with the place.
Alexia began to leave the hospital for a few days at a time and stay at Bluebell Wood. Here, her medical needs would be taken over by the care team so that her mum and dad could have a break and they would even get their meals cooked by the hospice. When Alexia eventually left the hospital after 11 months she was admitted to Bluebell Wood while they prepared for her to go home.
“Every time we get here she just smiles from ear to ear” said Lizzie “and is keen for us to leave so she can enjoy the place on her own. It gives us chance to have a break and when we stay at Bluebell Wood we get a full night’s sleep as Alexia can often stay awake throughout the night.”
“It also gives us the chance to meet other parents and talk to them about their experiences” added Lizzie.