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I fear for my son’s future living with kidney disease

03 May 2024

At 20 weeks pregnant, Haley Harrison and her husband, Adam, from County Down, Northern Ireland, were told that their child, Jenson, would be born with just one functioning kidney. Now four years old, Jenson is making his parents hugely proud with his positivity, despite the many hospital stays, scans, blood draws and need for regular medication. 

Haley says: “He doesn’t let anything get in his way and takes everything in his stride. He is our positivity, but we do fear for the future with existing treatments for kidney disease. We aren’t sure his functioning kidney will get him through his adult life.” 

Little boy lying in hospital bed during a a visit to check his one kidney
Jenson during a hospital visit

A difficult pregnancy

Haley’s pregnancy with Jenson was a very different experience to that with her first child. Before he was born, Jenson was diagnosed with a multi-cystic dysplastic kidney, and Haley required weekly scans to monitor his growth and blood flow. 

Haley says: “This was a scary time as we hadn’t ever heard of this condition before. It was really worrying. Due to the complexities, we weren’t sure what would happen when he was born.” 

Doctors recommended an induced birth to avoid going beyond the due date, and Jenson was born in September 2019. Haley says: “Straight after he was born, the worry set in for us and the what ifs. However, he was able to urinate after six hours, and the doctors’ concern became less urgent. We were discharged and told we would be brought back for a scan to assess his situation further.” 

Jenson required antibiotics to prevent infection, and after two weeks he had a DMSA (dimercaptosuccinic acid) scan and an ultrasound to check his kidney function. Doctors confirmed that Jenson’s right kidney was not functioning at all, and he was referred to a paediatrician and a nephrologist for quarterly check-ups. 

Looking after Jenson’s kidney

Protecting the function of Jenson’s left kidney is a priority, and the family have to constantly consider the impact of daily life. Haley says: “Jenson is so independent already and ensures he drinks enough water every day. His teachers are also good at making sure this happens now he has started school.” 

“Jenson’s blood pressure and possible scarring on the functioning kidney are our main concerns now. We are waiting for a scan to assess what future treatment might be necessary. There are so many questions going through our minds. Will he need a transplant? Will his blood pressure negatively affect him? Will he take on all this worry when he is older?” 

“I fear his blood pressure will keep giving him headaches and he’ll need medication for most of his life. We hope his life won’t be impacted too greatly by his illness.” 

Improving treatments

Haley and Adam are optimistic that further research into kidney disease will improve the treatment options available to Jenson in the future, and, ultimately, his quality of life, should his left kidney fail. Haley says: “We hope research into kidney disease continues to grow and benefits people who need it.” 

There is currently no cure for kidney disease and existing treatments, such as dialysis, are demanding and exhausting. There are roughly 5,800 people waiting for a transplant in the UK and it can take years to receive one. On average, a transplant will last just 20 years before another is needed.   

At Kidney Research UK, we are funding crucial research into new and better treatments for the estimated 7.2 million people living with kidney disease in the UK. Help us to transform treatments and make transplants last forever.  

Help transform treatments for children like Jenson.

young blonde hair boy, in hospital having a kidney check up
Jenson, having a check-up

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