21 Aug Selena’s story: Through her mother’s eyes
Meet Selena – she is a funny, loving, and carefree 5-year-old, but her journey through life so far has not been an easy one. Selena’s first diagnosis came before she was even born, ‘Multicystic dysplastic kidney disease’. A disease that we believed would mean one of her kidneys would never work, but the other would work well and take over the required function.
It is possible, and quite common, for people to live healthy lives with a single kidney.
Unfortunately, it didn’t take long after she was born for her doctors to realise that this wasn’t the case. Within her first year of life Selena had multiple hospital admissions due to bladder and urinary tract infections, and her pediatrician decided to book her in for a Micturating Cysto-Urethrogram to see if renal reflux could be the cause of so many infections.
That very same afternoon, on our way back from the hospital we received a phone call, from the other end of the line came words that we were woefully unprepared for; words that changed our lives forever. “Selena has chronic kidney disease, and sometime in the near future she will require dialysis or a kidney transplant.”
This was the real start of our journey. At only 18 months old Selena went for her first big surgery – a full ureteral reimplantation, which was successful in slowing down her infections, however she continued to have numerous hospital admissions. She was unable to fully empty her bladder alone, and had to be catheterised 5 times a day, in addition to this she required erythropoietin injections 2-3 times a week. At 3 and a half years old her disease progressed to ‘End stage kidney failure’ and she was flown up to Starship hospital to start dialysis. Selena spent 2 years on dialysis and during that time was in and out of hospital with complications such as peritonitis, site infections, anemia requiring blood transfusions and iron infusions, continued erythropoietin injections multiple times a week and another major surgery – a full parathyroidectomy.
On September 20th, 2023, at around 1am, we received a phone call. “We have a kidney for Selena”. It was finally time for a transplant! Full of both anxiety, and excitement, we made our way into Starship Hospital to prepare for a whole new chapter. The next day, a week shy of her 5th birthday, Selena received a deceased donor kidney transplant and after a few days in intensive care, and then a little while longer on a regular ward, we were off home ready to navigate a life off dialysis.
Life post-transplant has been very positive for Selena. She has much more energy, was able to start school and is getting to experience a more balanced childhood, with much less hospital time. Unfortunately, her journey is far from over. One thing we wish was more understood about kidney disease is that it is a lifelong battle.
Kidney transplants are amazing, and we have seen firsthand how much they can increase quality of life – however they are not a cure. Selena is still having regular check-ups to ensure her kidney is functioning well and will be on immune suppressants for life, and we live in a constant battle between being grateful for her transplant and being worried for her future. So far, in her 5 years of life, Selena has spent hundreds of days in hospital, had over a dozen operations, and been through countless treatments. Kidney failure is a journey that is difficult to articulate, but it is one that I am certain we would not be surviving without the unwavering support of friends and family, the incredible nephrology team at Starship hospital and the amazing people at Kidney Kids New Zealand.