'The scariest part is the recovery': courageous baby Hugo's fight for life

The Advertiser

20-06-2025

At only four days old, Hugo Holding went through open-heart surgery.
Mum Hayley White, of Cessnock, said Hugo was diagnosed with a heart condition while she was pregnant.
"We were asked if we wanted to terminate the pregnancy. That was a heartbreaking thing to be asked," Ms White said.
"No child asks to be born, but we wanted to say we did everything we could to give him a life.
"It was hard. We knew we'd be choosing to put our baby first and this would affect our other children."
She added that if "any of my children were unwell, there's not a thing I wouldn't do for them".
"I decided my unborn baby deserved that same respect. He is my child."
Ms White sought to raise awareness that one in 100 babies are born with a congenital heart defect.
Hugo's heart condition meant "the whole left side of his heart is small, including his valves".
During surgery in January, he had an aortic arch repair and ASD [atrial septal defect] closure at Westmead Children's Hospital.
Ms White said the surgeons and cardiologists were "amazing".
"You can tell they really do care. They truly want the best for the child," she said.
Hugo was in ICU for two months and a cardiac ward for a month.
During this time, Hugo's dad Tyson Holding lost his job after his place of work was sold.
A GoFundMe, titled "Hugo's Journey", has been started to help the family.
Hugo went home for 10 weeks, but a follow-up echo scan showed his heart pressures were high.
He returned to hospital last month for a diagnostic procedure.
"He lost blood and went downhill. There was an issue with the ventilation machine. At one point, it wasn't working properly," Ms White said.
"He ended up in ICU and didn't bounce back. After two days, they decided to intubate him, putting tubes down his nose and throat to take over the lungs' work."
The doctors were concerned for Hugo's life, so he underwent a second open-heart surgery on May 30, called the Ross procedure, to replace his aortic valve with his own pulmonary valve.
His pulmonary valve was replaced with a donor valve.
"They've said the blood flow is looking a lot better now and his heart pressures are down," Ms White said.
"His recovery so far is a lot better than last time. Fingers crossed he keeps on that path."
Doctors have said Hugo's mitral valve will probably need replacing in future with a mechanical valve.
Now five months old, Hugo is in a ward at Westmead for children with heart conditions.
"After a big surgery, they put them on a lot of opioids like morphine and fentanyl. He's now being weaned from the drugs, which takes weeks.
"The scariest part is the recovery and the things that can go wrong after surgery. It's really hard on the little babies."
The family, including three of Hugo's four siblings, is staying at Ronald McDonald House.
"I would like to give a shout out to Ronald McDonald House and the charity HeartKids," Ms White said.
At only four days old, Hugo Holding went through open-heart surgery.
Mum Hayley White, of Cessnock, said Hugo was diagnosed with a heart condition while she was pregnant.
"We were asked if we wanted to terminate the pregnancy. That was a heartbreaking thing to be asked," Ms White said.
"No child asks to be born, but we wanted to say we did everything we could to give him a life.
"It was hard. We knew we'd be choosing to put our baby first and this would affect our other children."
She added that if "any of my children were unwell, there's not a thing I wouldn't do for them".
"I decided my unborn baby deserved that same respect. He is my child."
Ms White sought to raise awareness that one in 100 babies are born with a congenital heart defect.
Hugo's heart condition meant "the whole left side of his heart is small, including his valves".
During surgery in January, he had an aortic arch repair and ASD [atrial septal defect] closure at Westmead Children's Hospital.
Ms White said the surgeons and cardiologists were "amazing".
"You can tell they really do care. They truly want the best for the child," she said.
Hugo was in ICU for two months and a cardiac ward for a month.
During this time, Hugo's dad Tyson Holding lost his job after his place of work was sold.
A GoFundMe, titled "Hugo's Journey", has been started to help the family.
Hugo went home for 10 weeks, but a follow-up echo scan showed his heart pressures were high.
He returned to hospital last month for a diagnostic procedure.
"He lost blood and went downhill. There was an issue with the ventilation machine. At one point, it wasn't working properly," Ms White said.
"He ended up in ICU and didn't bounce back. After two days, they decided to intubate him, putting tubes down his nose and throat to take over the lungs' work."
The doctors were concerned for Hugo's life, so he underwent a second open-heart surgery on May 30, called the Ross procedure, to replace his aortic valve with his own pulmonary valve.
His pulmonary valve was replaced with a donor valve.
"They've said the blood flow is looking a lot better now and his heart pressures are down," Ms White said.
"His recovery so far is a lot better than last time. Fingers crossed he keeps on that path."
Doctors have said Hugo's mitral valve will probably need replacing in future with a mechanical valve.
Now five months old, Hugo is in a ward at Westmead for children with heart conditions.
"After a big surgery, they put them on a lot of opioids like morphine and fentanyl. He's now being weaned from the drugs, which takes weeks.
"The scariest part is the recovery and the things that can go wrong after surgery. It's really hard on the little babies."
The family, including three of Hugo's four siblings, is staying at Ronald McDonald House.
"I would like to give a shout out to Ronald McDonald House and the charity HeartKids," Ms White said.
At only four days old, Hugo Holding went through open-heart surgery.
Mum Hayley White, of Cessnock, said Hugo was diagnosed with a heart condition while she was pregnant.
"We were asked if we wanted to terminate the pregnancy. That was a heartbreaking thing to be asked," Ms White said.
"No child asks to be born, but we wanted to say we did everything we could to give him a life.
"It was hard. We knew we'd be choosing to put our baby first and this would affect our other children."
She added that if "any of my children were unwell, there's not a thing I wouldn't do for them".
"I decided my unborn baby deserved that same respect. He is my child."
Ms White sought to raise awareness that one in 100 babies are born with a congenital heart defect.
Hugo's heart condition meant "the whole left side of his heart is small, including his valves".
During surgery in January, he had an aortic arch repair and ASD [atrial septal defect] closure at Westmead Children's Hospital.
Ms White said the surgeons and cardiologists were "amazing".
"You can tell they really do care. They truly want the best for the child," she said.
Hugo was in ICU for two months and a cardiac ward for a month.
During this time, Hugo's dad Tyson Holding lost his job after his place of work was sold.
A GoFundMe, titled "Hugo's Journey", has been started to help the family.
Hugo went home for 10 weeks, but a follow-up echo scan showed his heart pressures were high.
He returned to hospital last month for a diagnostic procedure.
"He lost blood and went downhill. There was an issue with the ventilation machine. At one point, it wasn't working properly," Ms White said.
"He ended up in ICU and didn't bounce back. After two days, they decided to intubate him, putting tubes down his nose and throat to take over the lungs' work."
The doctors were concerned for Hugo's life, so he underwent a second open-heart surgery on May 30, called the Ross procedure, to replace his aortic valve with his own pulmonary valve.
His pulmonary valve was replaced with a donor valve.
"They've said the blood flow is looking a lot better now and his heart pressures are down," Ms White said.
"His recovery so far is a lot better than last time. Fingers crossed he keeps on that path."
Doctors have said Hugo's mitral valve will probably need replacing in future with a mechanical valve.
Now five months old, Hugo is in a ward at Westmead for children with heart conditions.
"After a big surgery, they put them on a lot of opioids like morphine and fentanyl. He's now being weaned from the drugs, which takes weeks.
"The scariest part is the recovery and the things that can go wrong after surgery. It's really hard on the little babies."
The family, including three of Hugo's four siblings, is staying at Ronald McDonald House.
"I would like to give a shout out to Ronald McDonald House and the charity HeartKids," Ms White said.
At only four days old, Hugo Holding went through open-heart surgery.
Mum Hayley White, of Cessnock, said Hugo was diagnosed with a heart condition while she was pregnant.
"We were asked if we wanted to terminate the pregnancy. That was a heartbreaking thing to be asked," Ms White said.
"No child asks to be born, but we wanted to say we did everything we could to give him a life.
"It was hard. We knew we'd be choosing to put our baby first and this would affect our other children."
She added that if "any of my children were unwell, there's not a thing I wouldn't do for them".
"I decided my unborn baby deserved that same respect. He is my child."
Ms White sought to raise awareness that one in 100 babies are born with a congenital heart defect.
Hugo's heart condition meant "the whole left side of his heart is small, including his valves".
During surgery in January, he had an aortic arch repair and ASD [atrial septal defect] closure at Westmead Children's Hospital.
Ms White said the surgeons and cardiologists were "amazing".
"You can tell they really do care. They truly want the best for the child," she said.
Hugo was in ICU for two months and a cardiac ward for a month.
During this time, Hugo's dad Tyson Holding lost his job after his place of work was sold.
A GoFundMe, titled "Hugo's Journey", has been started to help the family.
Hugo went home for 10 weeks, but a follow-up echo scan showed his heart pressures were high.
He returned to hospital last month for a diagnostic procedure.
"He lost blood and went downhill. There was an issue with the ventilation machine. At one point, it wasn't working properly," Ms White said.
"He ended up in ICU and didn't bounce back. After two days, they decided to intubate him, putting tubes down his nose and throat to take over the lungs' work."
The doctors were concerned for Hugo's life, so he underwent a second open-heart surgery on May 30, called the Ross procedure, to replace his aortic valve with his own pulmonary valve.
His pulmonary valve was replaced with a donor valve.
"They've said the blood flow is looking a lot better now and his heart pressures are down," Ms White said.
"His recovery so far is a lot better than last time. Fingers crossed he keeps on that path."
Doctors have said Hugo's mitral valve will probably need replacing in future with a mechanical valve.
Now five months old, Hugo is in a ward at Westmead for children with heart conditions.
"After a big surgery, they put them on a lot of opioids like morphine and fentanyl. He's now being weaned from the drugs, which takes weeks.
"The scariest part is the recovery and the things that can go wrong after surgery. It's really hard on the little babies."
The family, including three of Hugo's four siblings, is staying at Ronald McDonald House.
"I would like to give a shout out to Ronald McDonald House and the charity HeartKids," Ms White said.