“As long as we have a heart beat we have hope”
Aedan defies all odds and celebrates his third birthday with the gift of life- a new kidney
Aedan, from Castletown in the Isle of Man, has just celebrated his third birthday, an extra special birthday as it was a milestone his family never thought he’d reach.
Whilst mum Shirley was pregnant with Aedan, Aedan was diagnosed with PUV (Posterior Urethral valves). This condition is only found in boys and affects the urethra which means that waste products filtered by the kidney are not able to flow through the urethra to the bladder. Additionally, Aedan’s lungs and kidneys weren’t developing properly. Devastatingly, the family were told to prepare for the worst and not to expect to leave the delivery room with their baby and started palliative care planning before he was even born. Aedan’s parents Shirley and Paul even bravely enquired about donating Aedan’s organs so that their little baby boy could save another life.
Thankfully Aedan defied all odds. Aedan was delivered by planned c-section at Liverpool Women’s Hospital. Aedan was then transferred to Alder Hey the day after he was born as his kidneys needed attention and he stayed there for three months. Aedan’s lungs were functioning as they should however, he had severe kidney disease. This was initially managed through medication with a view to dialysis and a kidney transplant in the future.
The family wanted to make sure Aedan was as strong as possible before he had a transplant and was trained by the renal team at Alder Hey to carry out Peritoneal dialysis.
Aedan’s doctor, Dr Henry Morgan, Consultant Nephrologist explained:
“Peritoneal dialysis is a treatment for kidney failure that uses the lining of your abdomen, or belly, to filter your blood inside your body. For Aedan’s family, this meant that the dialysis could be carried out at home. However, Aedan was prone to infection and kept getting Peritonitis (an infection of the inner lining of your tummy) which meant his dialysis wouldn’t work. We looked at his options and we knew we needed to bring him here to Alder Hey for Haemodialysis, a treatment to filter wastes and water from your blood, as a healthy kidney would do. Aedan’s best option for the future however would be a transplant, rather than a lifetime of dialysis and the specialist renal team here could prepare him for that.”
Aedan and his parents would catch the red-eye flights three times a week from the Isle of Man to Liverpool. Aedan had to have several trips to theatre over the course of his treatment, to fit lines for his dialysis and to repair his bladder and urethra. Mum and dad stopped counting after 12! Earlier in 2023, the renal and cardiac team worked together to fit a new line for his dialysis-but it wasn’t working and without it he wouldn’t survive. Aedan was urgently put on the deceased donor list (a list of all the people in the UK who are waiting for an organ from a deceased donor). Aedan’s parents weren’t a suitable donor match and it was Aedan’s only option. The family knew that as long as he had a heartbeat, they had hope.
Mum Shirley said:
“In August 2023, we received the call we’d been nervously waiting for and prayed would come. There was a kidney waiting for Aedan. We grabbed our bags and Aedan and his dad Paul went to Manchester Hospital by air ambulance and I followed with all our stuff, closely behind. The surgery took approximately six hours and everything went smoothly. The kidney was a great match and Aedan was well and sat up in his cot, giggling and laughing on just day five. I couldn’t believe it.”
Aedan recently celebrated his third birthday and his first outside of hospital, a milestone they thought he might never reach. Aedan went to the aquarium and Manchester Airport visitor centre as luckily Aedan loves planes and can even name most of them! He will soon fly home to be reunited with his three older brothers and they can’t wait to see him.
Aedan’s Mum Shirley said:
“We are so grateful to the renal and dialysis team at Alder Hey in particular, who looked after us so well, during our lengthy stays and helped us get Aedan ready for his transplant. We don’t know what we would have done without them.”
Dad Paul said:
“We’re also so thankful to those who are donors, without them our little boy wouldn’t be here celebrating his third birthday.”