Lilly-Anne’s story – supported by Shooting Star Children’s Hospices
02 April 2020
Lilly-Anne was born five weeks early in June 2013 and from the very start mum Katie picked up on signs that things might not be right with her newborn.
“From the very beginning she just wasn’t feeding probably, she couldn’t drink from the bottle and was grizzly.” Despite this they were sent home from the hospital with the doctors reassuring them that it was down to her being premature and that her feeding would improve.
With Lilly-Anne at home, Katie endured a week of continuous crying and difficulty in feeding. Desperate, she returned to hospital to ask them to look into what was going on with her baby girl. “They eventually admitted her and inserted a tube to help feed her. She wasn’t growing very well so they undertook some tests and told me she was suffering from a gastro-reflux condition; we were given some medication and sent home again.”
Another few agonising weeks passed. “I was still in the same boat of having a child not feeding properly and in distress, so I gave it another week before going back to hospital and demanding they admit her,” explains Katie. This was the start of Lilly-Anne’s lengthy stay in hospital. “She was admitted to our local hospital at 5 weeks old and stayed until she was 4 months old; we were then transferred to Chelsea and Westminster where she stayed until she was 18 months old. We sort of lived between the two hospitals; if we did manage to go home it would only be for a night or so because something else would go wrong.”
When Lilly-Anne was 9 months old she was put on TPN, Total Parenteral Nutrition, to help her gain weight. This method helps people who can’t eat any, or enough food by bypassing the gastro-intestional tract. Fluids are given intravenously into a vein in the chest to provide most of the nutrients the body needs.
At 10 months old, Lilly-Anne was taken to theatre for a bowel biopsy. During the operation it was discovered she was born with malrotation, an abnormality of the bowel which causes it to twist. Following this, she was given two drains in her stomach – a gastrostomy and jejunostomy to help with the fluid build-up in her stomach and bowel, which she still continues to need today. She’s also remained on TPN. “She has to be on TPN for 17 hours a day,” says Katie. “It get put on at 7pm and comes off at 2pm the next day. She has this line, which is a flexible plastic tube, inserted underneath the chest wall through a large vein directly to her heart.” Due to its invasive nature it’s extremely important to be very vigilant that she doesn’t get an infection. “Sometimes bugs can leak into the bloodstream and attach to the inside of the line. We have had lots of stints in hospital due to infections; there is a high risk of septicaemia. Everything has to be completely sterile as there is such a high risk of infection.”
Lilly-Anne remains officially undiagnosed. “Her gut just doesn’t work; we don’t have a reason why, we may never know. It is hard, really hard. Our life is quite restricted and especially as Lilly-Anne gets older she feels more restricted.
“It’s difficult, as a parent you’re meant to do everything right by your child, but when you have a child like Lilly-Anne who needs so much medical help, I feel my role as a parent is taken away. I’m like someone medical to her, but when I come to Christopher’s I can be a mum. I can get involved and play and not have to worry about the medical side of things, just feel like a normal family and enjoy each other’s company.”
It was a home care team that first mentioned Shooting Star Children’s Hospices to the family. “We weren’t getting a lot of support at home so they said they were going to refer us. I wasn’t sure what to expect, what I was going to see, what it was about. I wasn’t keen at the beginning, but when I visited I realised it was a happy place and how invaluable it is! Lilly-Anne adores it, she doesn’t like to leave, she cries when she has to – she loves playing with the doll’s house especially!”
They also use Hospice at Home. “What’s great is they don’t leave Charlie out.” Charlie is Lilly-Anne’s 2-year-old brother. “They like to be together so it’s important to me that during a Hospice at Home visit he’s included and they’re very good at making sure that happens. Hospice at Home is a great service, not only for the supported child, but the whole family.”
Last year Katie had a rare break to take Lilly-Anne away on holiday. “I had organised a nurse to come with us, but Lilly-Anne was worried about the flying as she thought it was going to hurt her tummy. She worries about everything, even silly things, for example in her mind her TPN is on when it’s dark so when the clocks changed she got anxious. It’s not normal for a little girl of 4.” Christopher’s offers play and music therapy for children and their siblings to help work through their feelings and allow them to express themselves. So before she went on holiday Lilly-Anne attended some play therapy to help her relax and reduce her fear.
“Lilly-Anne looks like a normal little girl but it’s a whole different story behind that face, which is hard for people to understand. It’s not a normal life, her medical needs are constant. At Christopher’s Lilly-Anne and Charlie are allowed to just play and be themselves. She likes being free, and that’s what she is here – she’s free.”