Kaychanel and her family access care and support from East Anglia’s Children’s Hospices (EACH). Kaychanel has a condition called Vacterl Sequence and also has a tracheostomy. This is her story.
Kaychanel’s mum Louise said: “When I had scans I was told there were many complications with the pregnancy including a lack of amniotic fluid and problems with many of the baby’s organs including the heart, bladder, oesophagus and kidneys. I was offered a termination. I then discovered I was having a little girl and I decided I wasn’t going to let go and continued with the pregnancy.”
Within hours of being born, Kaychanel was taken to Great Ormond Street Hospital (GOSH). Louise and Kaychanel spent the next three months at GOSH while surgeons performed a number of very complex operations.
Kaychanel and her family have been supported by EACH since she was two years old. Kaychanel has been for day care and overnight stays and has taken part in music therapy and specialist play sessions too. More recently Kaychanel has been receiving dialysis at Quidenham hospice.
Kaychanel goes to Quidenham hospice four times a week for sessions of dialysis which last four hours at a time. Kaychanel had previously had a kidney transplant with an organ donated by her step father but contracted septicemia which left her feeling very ill, with seizures, fluctuating blood pressure and dramatic weight loss. Despite attempts to save the organ, it had to be removed.
EACH is the first children’s hospice in the UK to deliver dialysis, and Kaychanel is only one of six children in the country who receive dialysis outside of a hospital setting. Three EACH nurses at Quidenham have received specialist training from staff at Great Ormond Street Hospital in London to be able to administer treatment and one more is due to receive training shortly. This means there will always be someone to deliver dialysis to Kaychanel.
Together for Short Lives supports, lobbies and fundraises for services like East Anglia’s Children’s Hospice in Quidenham, so they can continue to deliver incredible care that is a lifeline to thousands of children like Kaychanel and her family.