A mother's life-saving gift

For brave little Harry, the transition from pre-school to ‘big school’ was “easy-peasy”. Every day he wore his uniform with pride, gave mum a big wave goodbye and spent lunchtimes playing with his new friends. Harry always came home with a cheeky grin and a dirty shirt - the markings of another great day.

His proud parents Nigel and Evelyn never expected school would soon become Harry’s form of respite.

In mid-2018 when initial bloating in Harry’s tummy started spreading to other areas of his body, they rushed their little boy to the Emergency Department at Sydney Children’s Hospital, Randwick. There, doctors quickly became concerned for Harry’s kidney function after finding unusual protein readings in some routine tests.

After further assessment, doctors confirmed their 5-year-old boy had kidney disease. A frightening diagnosis that was the start of a long and exhausting year-and-a-half battle for the whole family.

The months that followed meant Harry spent less time in the classroom and more in Hospital. His kidneys couldn’t filter his blood properly and remove waste, causing a dangerous buildup of fluid and many other complications to his body.

Harry’s team of renal consultants worked tirelessly to find the underlying cause of his condition and why his response to medication was so poor. Through a biopsy and genetic testing, Harry was found to have a genetic (ACTN4 gene) mutation causing focal segmental glomerulosclerosis (FSGS). The prognosis was Nigel and Evelyn’s biggest fear - end-stage kidney failure. The kidney failure was rapid and within weeks of the diagnosis Harry was on dialysis to stay alive.

Dialysis was a hard period for the family. Harry had a dialysis catheter surgically inserted into his peritoneum for daily dialysis running 10 hours every night. The procedure could occur at home which is great for children. However, dialysis was accompanied with much medication, meticulous diet restrictions and strict fluid intake and a rigorous cleaning and disinfecting regime. The kidney failure also meant that Harry was endlessly tired and nauseous. Caring for their son was a full-time job between Nigel and Evelyn. For Harry, it wasn’t the loss of his favorite moments like bath time and swimming lessons that upset him the most. It was the loss of the independence, and surprisingly, the routine blood pressure checks and blood tests that were most scary.

Everyone at the Hospital stepped in to help Harry and his family. The multidisciplinary team could always make Harry laugh; so important in the frequent Hospital visits. Kirsty, from the wonderful child life therapy team, helped him make a very special toy doll who, just like Harry had to undergo blood pressure checks and blood tests, which made the process easier for him to get through.

A kidney transplant was the only option for Harry to have a future healthy life. Finding a compatible donor can take years. If you are lucky to have a potential living donor, this is shortened. His mum, Evelyn, was his best chance. For Harry, it was a long nine month wait while the renal team tirelessly steered the complex donor work up process. Nigel and Evelyn agonisingly watched their son’s condition deteriorate, to a point where he needed continuous dialysis.

Throughout it all, Harry still found the energy to attend school most days for a couple of hours. For Harry, school offered a sense of normality, and was something to look forward to every day.

The long wait finally came to an end on the 25th of November 2019, when Harry received the greatest gift of all. It wasn’t the latest set of Lego or a new iPad, but something much more special- one of his mum’s lifesaving kidneys.

Now, just 5 months post-transplant, Harry is doing remarkably well and is looking forward to returning to school. He’s regained his strength, loves to sing, dance and play schoolyard tip with his friends.said Jess.

For his parents Evelyn and Nigel, the incredible support and kindness from all Hospital staff was amazing. Looking back, Evelyn shares; “I am so grateful for the support from all doctors and nurses. Everyone was so kind and always tried their best to make Harry laugh and stay strong- which at time was very difficult. I can’t thank them enough!”

Although Harry’s condition will need frequent review and daily medication for his lifetime, for now, he’s just enjoying being a kid again. His parents hope Harry’s kidney will last many long years, but another transplant down the track may be necessary.

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