Kayla was diagnosed with fluid on her brain whilst she was still in the womb and the doctors said she would not survive birth. Her mum, Claire, was devastated and prepared herself for the worst. But Kayla proved them wrong, she survived birth and today she is a bright, cheeky 6 year-old.
She can’t communicate but she’s clever and babbles away. She also has a mischievous streak! She is stronger than anybody expected. But Kayla has lots of medical problems and has been admitted to the Paediatric Intensive Care Unit many times in her short life. As well as Congenital Hydrocephalus Kayla has Schizencephaly, a rare birth defect which affects brain function. She has numerous development delays, epilespsy and feeding problems. She is fed through a tube and has a Gastrostomy for her medicines. She takes a bewildering amount of medication each day to manage her conditions and prevent her seizures.
Claire explains how difficult it is to care for a child with severe health issues, “It’s a 24-hour, 7-day-a-week job. There is no break and no rest. Kayla has very disturbed sleep so I never sleep a full night. There are no holidays, no sick days, no days off. It is exhausting and can be very lonely.”
Kayla was almost 2 when a nurse at the hospital mentioned The Donna Louise to Claire; her first thought was “What do you know that I don’t?” She was still concerned when Tracey, from the Care Team, came to visit them at home and she was half-hoping that Kayla would not meet the criteria, and not be accepted to the hospice. She was accepted, and when Claire came to look round she sat outside in the car for an hour, too scared to come through the door, all the time thinking, “This is not right, this is a place of death.” When she eventually plucked up the courage to come in, she found something very different to what she expected, she was surprised by how homely if felt, a “home-from-home.” In fact Claire now calls The Donna Louise Kayla’s ‘second home’ and the staff her ‘second family’. She says, “It’s a fun place, there is so much happening and so many things for Kayla to do whilst she is here. She comes for respite stays, it’s like a little holiday for her, and she’s not bothered when I leave her. She cries when she has to leave!” Claire stayed with Kayla on her first few visits; it’s hard to leave your sick child with somebody else.
But now she walks away knowing that Kayla is safe, happy and having fun. Claire explains that it is like a holiday for her too, “It’s a real break for me. I don’t do anything particularly special, just normal things that other people take for granted. I put my feet up, with a cup of tea and watch the TV. This is a real luxury. The whole support we get from The Donna Louise is epic. I’ve made so many friends who understand what we are going through, and I feel less alone. Kayla’s brother Bradley is 11 and he enjoys coming for the sibling’s activities too.”
And when life gets too much, Claire knows that she can call the hospice for support, “One day I was on my knees, I had dropped Kayla at nursery and was coming to the hospice for a mum’s pamper session. I felt like I could not go on and arrived at the hospice in tears, the counsellor was there for me to talk. I don’t know where I would be without this place. I would be lost. I am so thankful to the supporters who help keep The Donna Louise open. You’re all angels, thank you for helping my child, for helping everybody’s children. Kayla loves you!”