Lily’s story

Anyone who’s been in the company of a three-year-old will know that they don’t sit still for long.  Lily was exactly the same until she became unwell back in March.  Now she has to sit in exactly the same place to undergo hemodialysis for four hours every other day.  Her home right now is on Pelican Ward, where she sleeps in one room and has her treatment in another.

Apart from the normal mild range of childhood illnesses, Lily from Neath had been healthy and well until March this year when she developed a stubborn cough that she couldn’t shift.  The family went  back and forward to the GP several times over a three week period but when her feet and eyes started to puff up one Friday afternoon, they really started to worry.  By the following morning, things had got worse and Amy and Ryan decided to take Lily to their local A&E. There, with her condition rapidly worsening, tests uncovered that Lily’s protein levels were dangerously low.  Now critically unwell, she was rushed to the high dependency unit

By the Sunday, Lily was considered stable enough to be transferred by the WATCh team to the paediatric critical care unit at Noah’s Ark. But within an hour of arriving, while having a reassuring cuddle with her dad, Lily turned blue

Ryan says :“While I was holding Lily, I  knew she was very unwell.  It was hard to keep her awake and when she was she said “Lily really not well”.  After that she took a turn for the worse and went blue. My heart broke into a million pieces at that moment but thanks to the fast response from the nurses and doctors,  she’s still here with us today.”

The crash team were called and Lily was sedated and put on a ventilator to save her life.  Still in shock at how quickly their situation had changed, Amy and Ryan were told that Lily was battling three viruses but was also having genetic tests for a kidney disorder which they suspected could be the underlying issue.  Whatever the outcome of the tests, Lily would need to start dialysis and was being put on the kidney transplant list.

Amy says: “ I felt like I was going to lose her. I really thought that she was going to die.”

Two days later and still on the ventilator, Lily went into surgery to have a hickman line inserted.  Four days after that, she was well enough to come off the ventilator and was moved to Pelican to start dialysis.

Lily had woken up to a completely different world to the one she had lived in up to that point. She was in a completely new place surrounded by a whole army of unfamiliar faces who needed to prod and poke her.  The tiny little girl retreated into herself, clutching tightly to the only people who made her feel safe, her mum and dad.

Children with kidney disease often develop high blood pressure because their kidneys lose the ability to filter fluids and regulate hormones that control blood vessel constriction. As a result, restricted diets are necessary to reduce the build up of toxic waste products, prevent bone disease, and avoid life-threatening fluid and mineral imbalances. Having loved her food before, Lily’s diet now consisted of two or three things and her fluid intake had to be carefully measured so it didn’t exceed 450mil a day.  Adjusting to so many dramatic changes would be a challenge for an adult, but for a small child who didn’t even understand why, it was overwhelming.

The first and most vital task was to get Lily onto haemodialysis. For that, she not only needed to sit still for hours but also be attached to a big machine with tubes and wires. Lily was understandably terrified at first but slowly,  day by day, the nurses and play team started to gain her trust.  Play specialists, Donna and Carys provided a constant flow of toys and games for Lily to play with, encouraging her to make slime and play with paint until gradually she started to relax.  Now seven weeks on from her first time, Lily loves her haemodialysis sessions, seeing it as an exciting chance to have Donna and Carys’ full, undivided attention.

Lily is now feeling a lot more confident with the rest of the team too and is quite happy to give cuddles to her nurses and play with her fellow ward mates. Unfortunately, Lily’s blood pressure is still too high to go home and return as an outpatient for haemodialysis and she’ll still need a transplant when the time is right, but at least now her mum and dad know that Lily is happy here.

Play specialist, Donna, says:  “It’s lovely to see how much Lily has come on since we first met her a few months ago.  The opportunities to play haven’t only given her the distraction she needed to get used to the haemodialysis, but in those early days it also made the environment feel familiar to her, because play is normal for all children. It’s amazing to see her ask for the nurses and play team by name now. She feels safe with the hospital team, which is what we wanted to achieve for her. “

Ryan says:  “We can’t thank the doctors, nurses and Donna and Carys enough for all they have done for us and more importantly, Lily.  We’d also like to thank the charity’s sparkle co-ordinators, Emily and Yvette for all that they have done for Lily –  arranging for her to see the fantastic “Gabby’s Dolls House Live” and making her birthday very special. You have all  made this life changing situation bearable!”