Bernard Óg Keaney, the third of Marieann and Bernard Keaney’s sons, had a difficult start in life. Born in Galway University Hospital in 2010, his condition required immediate transfer to Our Lady’s Children’s Hospital Crumlin (OLCHC) where he was diagnosed with kidney failure and more. Immediate treatment included commencing dialysis and the fitting of a colostomy bag.
Marieann only came home to Galway once in the following three months, so serious was Bernard Óg’s condition.
“It was touch and go for a long time,” Marieann says. “Bernard Óg was baptised before he went to Crumlin. We had to tube feed him initially and be trained up on doing home [peritoneal] dialysis. It was a big change learning how to use the machine and how to administer extra medication if he was sick. It involved scrubbing up and everything being so sterile. Dressings had to be changed every second day, too, where the tube was coming out of his side. When he started PEG feeding, that tube had to be kept sterile too. He continued to be PEG fed until after the transplant.”
Working as a care assistant in a nursing home while her husband worked part-time at a golf club as well as farming, rearing cattle and horses, they managed during the difficult years with a lot of support from family.
“It was stressful enough at times,” Marieann says, “but our other two boys, Jack and Patrick who were 10 and four at the time, were very good. My parents and mother-in-law were a great help too. We were lucky we had support.”
Home dialysis took place until Bernard Óg was three years old. When that ceased to be effective, haemodialysis (blood dialysis) was required in OLCHC.
“This had to be done in Dublin three days a week. We used to leave at 4am and be home at 4pm with Bernard Óg three hours on the machine from 8am. We drove for the first while, then transport was provided, which was a great help because only one of us needed to go with him each time.”
That continued for three years until a kidney transplant was possible.
Asked about developmental milestones like walking and talking, Marieann finds it difficult to recall.
“He was so tied up in machines that it’s hard to remember exactly,” she says, “but he didn’t really talk until he was over two and didn’t walk until he was 18 months or so.”
Transplant call came at midnight
He was also on the kidney transplant list, awaiting a donor.
“It was lucky the way it turned out. He was just back on it after a period of being sick when we got the call [that a kidney was available] in December 2016 when he was six.”
The call came when they had gone to bed.
“We set off around midnight for Temple Street and stayed with him until the operation was over.”
Seeing him after the operation was a very emotional experience for the couple.
“The transplant was a new lease of life for him and for the whole family.”
Marieann’s emotions were very complicated, however. That was because of an experience in the Keaney family three years earlier where Bernard Óg’s 23-year-old cousin, Thomas, had died following an unprovoked assault while working in Perth, Australia in December 2013.
His family had gone through the process of deciding about organ donation in the middle of such a traumatic time so Marieann was hyper-aware of Bernard Óg’s donor’s family’s feelings.
“I couldn’t stop crying,” she says. “It was unbelievable to see the improvement in Bernard Óg but we knew it was a young person who died for a kidney to be available and we felt so bad for the donor family, knowing what they were going through. In the end hospital staff encouraged me to focus on Bernard.”
Cousin Lauren Keaney, Bernard Óg, mum Marieann, dad Bernard Keaney with brother Patrick, Roundstone, Co Galway. \ Sean Lydon
The year that followed, 61 hospital appointments took place but Bernard Óg continued to make progress.
“It still meant a lot of trips to Dublin but now we weren’t there for hours at a time. It was just for check-ups.”
Loves his ponies
Bernard Óg is now 12 and has an extra year to do in primary school as he missed a lot due to illness but he is doing very well.
“He is still on a lot of medication,” his mum says, “but he plays football and loves farming and showing his Shetland and Connemara ponies in Clifden, Ballyconneely and Roundstone shows each year. The transplant was a new lease of life for him and we’ll always be grateful to his donor family.”
Cousin Thomas
Lauren Keaney was thrilled to see her cousin that she calls baby Bernard thrive after his transplant.
“It was something we hoped would happen after we donated Thomas’s organs when he died in Australia,” she says.
“We felt that if we made the decision to donate Thomas’s organs in Australia in the middle of our traumatic time, that baby Bernard would get a transplant in time here in Ireland too.”
Five people in Australia benefited from Lauren’s family’s decision to donate Thomas’s organs. Thomas was 23 when he died.
“It helps us to think of others being helped,” she says. “Any parent losing a child or a sibling losing a sibling, it’s a horrible time, it’s really life changing so to be able to help is comforting. At least parts of Thomas have gone on and are still living and recipients are happy and making progress. It’s an incredible thing that the body can do with organ donation. It’s a very hard call to come to terms with a loved one’s death but lovely to think that someone else could get the organs. Baby Bernard is our youngest cousin and he is so much fun. Watching him grow has been wonderful. His strength and determination is amazing. Now you’d never think there was anything wrong with him.”
Thomas lives on
Lauren’s mum, Ann, believes that her son lives on through the organ donations.
“I talk to him every day,” she says. “He doesn’t answer back but I think he hears me. We knew he’d want his organs donated because when baby Bernard was born he said, ‘I have two kidneys. I could give him one, I don’t mind.’ That was the sort of person he was. He’d want to help.”
Thomas Keaney had gone to work in a bar in Australia for a year and was about to prolong his stay in order to work on the new children’s hospital in Perth when, tragically, a late night altercation led to serious injury and 10 days later, death. His attacker was later found guilty of manslaughter and grievous bodily harm.
“It was a single punch to the head and his head hit the kerb,” Lauren says. “Thomas didn’t really know what had happened only that he hadn’t done anything wrong. Mam and Dad spoke to him on the phone a couple of times in those 10 days but we had no idea that death was going to be the outcome. Thomas was very healthy and we thought he would come through, so it was a dreadful shock to be told on Christmas Eve that he had taken a turn for the worse and was now in a coma. My parents couldn’t get a flight until St Stephen’s Day and, sadly, they had very little time with him when they arrived. It was the loneliest Christmas ever… Organ donation decisions had to be made very quickly, which wasn’t easy. We were all called to Granny’s house to discuss it over the phone with my parents. We all said, straight away, 100% yes, that if Thomas’s organs are donated and live on and help other people that baby Bernard would hopefully get his kidney too. Now he has and it’s lovely to see him thrive.”
Organ Donor Awareness Week is 20-27 May
This awareness day is organised by the Irish Kidney Association.
Individuals who wish to support organ donation are encouraged to share their wishes with their family and keep the reminders of their decision available by:
carrying the organ donor cardpermitting Code 115 to be included on their driver’s licence or having the “digital organ donor card” App on their smartphone.Organ Donor Cards can be requested by visiting the IKA website or by phoning the Irish Kidney Association on 01 6205306 or Free texting the word DONOR to 50050.
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Bernard Óg Keaney, the third of Marieann and Bernard Keaney’s sons, had a difficult start in life. Born in Galway University Hospital in 2010, his condition required immediate transfer to Our Lady’s Children’s Hospital Crumlin (OLCHC) where he was diagnosed with kidney failure and more. Immediate treatment included commencing dialysis and the fitting of a colostomy bag.
Marieann only came home to Galway once in the following three months, so serious was Bernard Óg’s condition.
“It was touch and go for a long time,” Marieann says. “Bernard Óg was baptised before he went to Crumlin. We had to tube feed him initially and be trained up on doing home [peritoneal] dialysis. It was a big change learning how to use the machine and how to administer extra medication if he was sick. It involved scrubbing up and everything being so sterile. Dressings had to be changed every second day, too, where the tube was coming out of his side. When he started PEG feeding, that tube had to be kept sterile too. He continued to be PEG fed until after the transplant.”
Working as a care assistant in a nursing home while her husband worked part-time at a golf club as well as farming, rearing cattle and horses, they managed during the difficult years with a lot of support from family.
“It was stressful enough at times,” Marieann says, “but our other two boys, Jack and Patrick who were 10 and four at the time, were very good. My parents and mother-in-law were a great help too. We were lucky we had support.”
Home dialysis took place until Bernard Óg was three years old. When that ceased to be effective, haemodialysis (blood dialysis) was required in OLCHC.
“This had to be done in Dublin three days a week. We used to leave at 4am and be home at 4pm with Bernard Óg three hours on the machine from 8am. We drove for the first while, then transport was provided, which was a great help because only one of us needed to go with him each time.”
That continued for three years until a kidney transplant was possible.
Asked about developmental milestones like walking and talking, Marieann finds it difficult to recall.
“He was so tied up in machines that it’s hard to remember exactly,” she says, “but he didn’t really talk until he was over two and didn’t walk until he was 18 months or so.”
Transplant call came at midnight
He was also on the kidney transplant list, awaiting a donor.
“It was lucky the way it turned out. He was just back on it after a period of being sick when we got the call [that a kidney was available] in December 2016 when he was six.”
The call came when they had gone to bed.
“We set off around midnight for Temple Street and stayed with him until the operation was over.”
Seeing him after the operation was a very emotional experience for the couple.
“The transplant was a new lease of life for him and for the whole family.”
Marieann’s emotions were very complicated, however. That was because of an experience in the Keaney family three years earlier where Bernard Óg’s 23-year-old cousin, Thomas, had died following an unprovoked assault while working in Perth, Australia in December 2013.
His family had gone through the process of deciding about organ donation in the middle of such a traumatic time so Marieann was hyper-aware of Bernard Óg’s donor’s family’s feelings.
“I couldn’t stop crying,” she says. “It was unbelievable to see the improvement in Bernard Óg but we knew it was a young person who died for a kidney to be available and we felt so bad for the donor family, knowing what they were going through. In the end hospital staff encouraged me to focus on Bernard.”
Cousin Lauren Keaney, Bernard Óg, mum Marieann, dad Bernard Keaney with brother Patrick, Roundstone, Co Galway. \ Sean Lydon
The year that followed, 61 hospital appointments took place but Bernard Óg continued to make progress.
“It still meant a lot of trips to Dublin but now we weren’t there for hours at a time. It was just for check-ups.”
Loves his ponies
Bernard Óg is now 12 and has an extra year to do in primary school as he missed a lot due to illness but he is doing very well.
“He is still on a lot of medication,” his mum says, “but he plays football and loves farming and showing his Shetland and Connemara ponies in Clifden, Ballyconneely and Roundstone shows each year. The transplant was a new lease of life for him and we’ll always be grateful to his donor family.”
Cousin Thomas
Lauren Keaney was thrilled to see her cousin that she calls baby Bernard thrive after his transplant.
“It was something we hoped would happen after we donated Thomas’s organs when he died in Australia,” she says.
“We felt that if we made the decision to donate Thomas’s organs in Australia in the middle of our traumatic time, that baby Bernard would get a transplant in time here in Ireland too.”
Five people in Australia benefited from Lauren’s family’s decision to donate Thomas’s organs. Thomas was 23 when he died.
“It helps us to think of others being helped,” she says. “Any parent losing a child or a sibling losing a sibling, it’s a horrible time, it’s really life changing so to be able to help is comforting. At least parts of Thomas have gone on and are still living and recipients are happy and making progress. It’s an incredible thing that the body can do with organ donation. It’s a very hard call to come to terms with a loved one’s death but lovely to think that someone else could get the organs. Baby Bernard is our youngest cousin and he is so much fun. Watching him grow has been wonderful. His strength and determination is amazing. Now you’d never think there was anything wrong with him.”
Thomas lives on
Lauren’s mum, Ann, believes that her son lives on through the organ donations.
“I talk to him every day,” she says. “He doesn’t answer back but I think he hears me. We knew he’d want his organs donated because when baby Bernard was born he said, ‘I have two kidneys. I could give him one, I don’t mind.’ That was the sort of person he was. He’d want to help.”
Thomas Keaney had gone to work in a bar in Australia for a year and was about to prolong his stay in order to work on the new children’s hospital in Perth when, tragically, a late night altercation led to serious injury and 10 days later, death. His attacker was later found guilty of manslaughter and grievous bodily harm.
“It was a single punch to the head and his head hit the kerb,” Lauren says. “Thomas didn’t really know what had happened only that he hadn’t done anything wrong. Mam and Dad spoke to him on the phone a couple of times in those 10 days but we had no idea that death was going to be the outcome. Thomas was very healthy and we thought he would come through, so it was a dreadful shock to be told on Christmas Eve that he had taken a turn for the worse and was now in a coma. My parents couldn’t get a flight until St Stephen’s Day and, sadly, they had very little time with him when they arrived. It was the loneliest Christmas ever… Organ donation decisions had to be made very quickly, which wasn’t easy. We were all called to Granny’s house to discuss it over the phone with my parents. We all said, straight away, 100% yes, that if Thomas’s organs are donated and live on and help other people that baby Bernard would hopefully get his kidney too. Now he has and it’s lovely to see him thrive.”
Organ Donor Awareness Week is 20-27 May
This awareness day is organised by the Irish Kidney Association.
Individuals who wish to support organ donation are encouraged to share their wishes with their family and keep the reminders of their decision available by:
carrying the organ donor cardpermitting Code 115 to be included on their driver’s licence or having the “digital organ donor card” App on their smartphone.Organ Donor Cards can be requested by visiting the IKA website or by phoning the Irish Kidney Association on 01 6205306 or Free texting the word DONOR to 50050.
Read more
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