A Killaloe mother-of-three has revealed the surreal moment watching her partner’s kidney being transported in a box for her son’s kidney before his vital transplant operation.
Nuala Conway admitted she got upset outside Beaumont Hospital in Dublin after experiencing an emotional rollercoaster over the last year as she and her partner, Denis Costelloe tried to source a living donor for Jayden (13), who was on dialysis due to kidney failure.
“I really broke down when I went out to get some fresh air after Jayden was put to sleep in theatre and saw the surgeons arrive from Beaumont Hospital with Denis’s kidney in a red box.
“It was just crazy and surreal. We recognised the surgeons from Beaumont. It was unbelievable.
“I hadn’t heard too much from Beaumont at this stage and was aware of the sacrifice Denis had made to donate his kidney.
“It has been very emotional over the last year trying to get a kidney for Jayden. It has been a massive whirlwind knowing two in the one house were going through a massive ordeal. Jayden has got a new lease of life thanks to Denis.
“Jayden, who is in Sixth Class in Killaloe Boys’ National School, had no life on dialysis being hooked up so early in the evening. It was very tough for him dealing with fluid restrictions.”
Jayden had to isolate in Temple Street Hospital a week before the operation took place on Monday, June 13.
Denis had his kidney operation in Beaumont Hospital around 8am and Jayden’s transplant started around 12 noon once doctors got the new kidney.
“We didn’t see Jayden until after 6pm. It was a long day. After getting the call that Denis was doing well, Jayden had to be put to sleep, which was really stressful. It was so hard.
“Denis made this decision to donate his kidney to Jayden out of love and it was the most amazing gift he could ever give to anyone. He will transform Jayden’s life but also ours as a family.
It was by no means an easy operation for Denis and we cannot thank his bravery and generosity enough. Recovery can be tough for a donor and it can up to a year for his other kidney to compensate for this loss.”
Nuala had travelled up to Temple Street a week before the surgery and she was joined by her brother, Albert, the night before and he provided great support to her before taking Denis home on Friday.
Because Jayden’s blood pressure was so high before the transplant, it was difficult and a lot more complicated to place him on the list to receive a kidney from a deceased’s donor.
However, thanks to Denis’s generosity, doctors were able to drain Jayden out on dialysis and stabilise him a week before the operation.
When Jayden was born, doctors discovered he had heart complications, pulmonary stenosis. He has also had open heart surgery at three months old.
At nine months old, he was diagnosed with congenital Nephrotic Syndrome and after a biopsy and genetic bloods it was confirmed he had a rare type of fsgs podicin Gene type.
The make-up of his kidney structure was wrong and he would let out a protein from his blood called Albumin.
The albumin would burn through his kidney and cause scarring. He required albumin infusion twice a week in University Hospital Limerick from nine months old.
After a few days, albumin would leak through his urine requiring another return for infusion.
In 2017, Jayden had his first kidney removed and this gave him a lease of life as he didn’t require albumin infusions for 18 months.
However, this eventually put too much pressure on his second kidney and he started dialysis in May 2021.
Nuala and Denis had to be trained in Crumlin Hospital for two weeks to learn how to provide Jayden with home dialysis for 12 hours seven nights a week.
Family stepped in to look after their two other children when they need to take Jayden to hospital.
Jayden needed a PD line inserted into his tummy for dialysis, which was extremely painful.
While this happened, Nuala’s brothers Albert, David and her partner Denis all went to Beaumont to give bloods to check to see if they were potential kidney donors for Jayden.
Denis was told it was unlikely to be him as he wasn’t a blood relative to Jayden.
Nuala recalled Albert was successful in the blood matches but unfortunately didn’t pass the medical and found out he had kidney disease he wasn’t aware of, while David was ruled out after high BP and blood was discovered in this urine.
While on dialysis, Jayden was on a strict 650 mls daily fluid allowance, which was very restrictive.
Following the new kidney, he has a new target of drinking about 1,800 mls daily to keep his kidney functioning.
Nuala said the family have received huge support from the local community.
She thanked all the surgeons, doctors and nurses who were involved with Jayden and Denis who worked around the clock during and after the operations.
After being discharged on Friday, Denis went over to see Jayden for a small party before he went home to recuperate.
Nuala’s neighbour, Carmel Byrne set up a GoFundMe page to help cover some of the cost of taking Jayden to hospital over the next year, which the family will be forever grateful for.
Before the operation, Tracy Howard organised a person to video householders shining a light outside their front door in a show of solidarity for Denis and Jayden during a drive around housing estates in Killaloe and Ballina.
Jayden will be on immunosuppressants and will need to be closely monitored to hopefully keep his new kidney safe and well.
He will be up and down to Temple Street two or three times a week for blood tests over the next few months.
It is understood that a taxi will be provided to take Jayden from Killaloe for his check-ups in Dublin for a few weeks, but the family will have to fund the cost of transport after this period.
Denis (37), who is from Croom in county Limerick, recalled Beaumont Hospital sent off his blood sample for testing in early January and the results came back confirming he was a match in early March.
He had a full medical check-up in Beaumont in the middle of March including a psychological review and was given the green light in early May.
He is thrilled the operation has been a success for Jayden in view of the risk with any operation that something unexpected can go wrong.
“I was a bit apprehensive before the operation. The Irish Kidney Association were very supportive dealing with queries and it was great to speak to donors who had successfully recovered,” Denis recalled.
“My operation after receiving a general anaesthetic lasted about four hours. I didn’t feel anything during the operation.
“When I woke up, I was hooked up with morphine to deal with the pain for the next 12 hours. I just needed rest and sleep after that.
“Day by day, I am building up my strength.”
He encourages people to carry an organ donor card because it can make a huge difference to other people.
For anyone thinking of participating in a live organ transplant, he stressed doctors in Beaumont will not allow this to proceed until all medical checks meet strict criteria.
He said he will have a medical check-up in six weeks before an annual test as part of the excellent aftercare.
To contribute to Jayden’s fundraiser, go to www.gofundme.com and search Jayden Conway’s journey.
East Clare correspondent, Dan Danaher is a journalism graduate of Rathmines and UL. He has won numerous awards for special investigations on health, justice, environment, and reports on news, agriculture, disability, mental health and community.