‘It’s been so heartbreaking to see Liam disintegrate in front of my eyes for the past year.”
That’s what mother-of-four Pam Dennehy, from Fossa, Co Kerry, says about the deterioration of her youngest child’s health because of scoliosis, curvature of the spine.
Born with cerebral palsy and also with a serious metabolic condition called glutaric aciduria type 1, and already facing many challenges because of those conditions, the development of scoliosis last year has added extra stress to an already demanding situation.
Currently Pam is waiting to be given a date for a spinal operation to correct Liam’s curvature but because the scoliosis is causing such pressure on his organs, she and Liam, who is now 13, are ‘living’ in University Hospital Kerry (UHK) in Tralee.
“It got to the point two weeks ago where I felt that I couldn’t keep Liam safe,” Pam says.
“He has had a reflux issue because of the scoliosis since last January. His curve is to the left so his right side is sunk in on his tummy, on his intestines, so he gets reflux.
“At night when he lies down he could choke on his own fluids. Although a surgeon said that he now needs a night nurse, that hasn’t happened. I’m here because I know that if he needs oxygen or suction or resuscitation in the night that I won’t have to wait 20 minutes for an ambulance. I’m trying to keep Liam well and I’m terrified of not being able to resuscitate.”
Emergency list
Liam has already had his pre-op tests for the spinal operation in Crumlin Children’s Hospital (CHI at Crumlin) but a date is awaited.
“They tell me he is on the emergency list and that we’ll know soon but it so hard waiting. Liam is an incredibly bright, easy-going child who wants to be an author. He’s a pure joy.”
Liam is now at 92 degrees of curvature and is in constant pain while he waits for surgery.
The situation is more tense because of Liam’s metabolic condition – glutaric aciduria Type 1 – which is life-threatening.
“This means that if he gets an illness of any sort – a head cold, anything – his body is at risk of coma, stroke or death.”
Pam describes what she has to do when Liam coughs at night.
“He is 5’4” now and so am I. I have to get him up and sit him on my lap, facing him towards me and ‘be his cough’. My tummy against his enables his cough because of the scoliosis curve affecting him. It’s very difficult because he can’t assist in any way. His body is completely twisted so he is in agony. He has both curvature and vertebral rotation.”
Liam’s condition worsened very rapidly last year. From his curve being 35 degrees back then, it is now 92 degrees, his mother says.
“Once you go over 85 degrees of curvature, you’re in a very dangerous medical place. In some countries if you’re over 50 degrees you’re talking surgery. I’ve also been told this week that because he has now reached over 85 degrees, it could potentially mean two surgeries now. It was always intended to be one but they have left him too long, I believe.”
Pam uses several phrases repeatedly during the interview. ‘I had to fight hard for x’ and ‘it was a battle to get y’.
Fighting for services since Liam was nine months old has left her exhausted.
“Every single aspect of it is a battle,” she says. “You’re already burnt out from the physical aspect of things and you have other children to look after and a house to run. My brain is fried with it all and there is mammy guilt too because I can’t be there as much as I want to be for the older boys but there is nothing I can do.”
Let down
While she wants to be positive and considers herself ‘solution focussed’, Pam feels very let down by the health service.
“It’s like Liam’s case is too complicated,” she says. “Some disabilities are well supported, but not all. With Liam, who has physical disability but no intellectual disability, he literally doesn’t seem to fit into anyone’s box but yet he’s a child who needs more intensive therapies.”
Liam is in 6th class in Fossa National School but he hasn’t been able to attend since last December because his scoliosis has worsened so much.
Fighting for services since he was a baby has meant Pam frequently writes to politicians, to ministers and to the Department of Education.
“It was a struggle to get the Eyegaze computer for him when he was small, for example. Liam communicates via this, with eye movements controlling the mouse, and he uses it to do his homework, play music, draw, change TV channels and play with remote control toys.”
She is concerned about the absence of speech therapy in the past five years also. This is needed not only to help his speech but also his ability to retain his swallow.
Liam pictured with a family pet, called Dog.
“At present, Liam is spoon-fed warm, wet foods that provide the necessary 2,200 calories he needs per day.”
Pam is also waiting for a peanut-shaped physio ball for him since November 2023.
“You’re told it’s ordered or it’s not in yet... You spend all your time chasing services. Getting a stander frame for him was another challenge. There are so many false promises that you become disillusioned.”
While Pam was allotted 10 care hours per week for Liam, the carers who were sent by the HSE haven’t worked out so far, unfortunately.
“Liam’s condition is complex so it’s not every carer can do it and they have to be trained in but not being able to find someone suitable means that I have to do everything for Liam.”
Chair bound
A current struggle is getting a suitable power chair for Liam so that he will be comfortable when he is sitting. He is fully chair bound currently and unable to use a stander or walker or do any exercises due to his pain.
Liam he is now fully chair bound.
“Liam has been chair bound for a year because of the scoliosis so you’re talking muscle deterioration because of that,” Pam says.
“A brace proved very painful for Liam so a matrix seating system chair was recommended. That has involved a lot of appointments and measurements being taken to customise it for Liam. It’s designed to provide support yet allow movement and comfort within that support.
“The first one hasn’t been a success and I had to push for a second opinion and fitting. That process has gone on since March 2023 but we’re supposed to have the final fitting today.”
Over the years Liam has availed of help from the Brothers of Charity in Tralee and Enable Ireland in Cork and his school has been supportive and Pam is very glad of that but she has also had to do a lot of training herself.
“I’ve had to learn through the good and the bad of it,” she says. “I’ve learned to do physio, I’ve trained in assistive technology so that I could teach school staff how to use the Eyegaze computer. Liam is now an independent user of that, he doesn’t need any help.”
The stress of all the care is now telling on Pam, she says.
“It’s burnout, really. I hear nurses saying to me ‘look after yourself’ but how do I do that? I don’t get the luxury of just being a mum at present.”
Scoliosis is where the spine twists and curves to the side. It can affect people of any age but most often starts in children aged 10 to 15.
In around eight in every 10 cases the cause of scoliosis is unknown. This is called idiopathic scoliosis.
Less commonly it may be caused by congenital scoliosis, where the bones of the spine didn’t form properly in the womb or because of an underlying nerve or muscle condition such as cerebral palsy or muscular dystrophy. This is called neuromuscular scoliosis.
In older adults, it can happen because of wear and tear of the spine with age.
Treatment for scoliosis depends on age; how severe the curve is; and whether it’s likely to get worse with time. Many people will not need treatment and only a small number will need to have surgery on their spine.
Symptoms of scoliosis
A visibly curved spine Leaning to one side Uneven shoulders One shoulder or hip sticking out The ribs sticking out on one side Clothes not fitting well Back painTreatment
A plaster cast or plastic brace may be fitted to stop the curve getting worse until the child stops growing. Sometimes surgery may be needed to control the growth of the spine until an operation to straighten it can be done when they stop growing.
Awaiting a taskforce
327 children on a waiting list: The most recent figures from February 2024 showed that there were 327 children waiting on scoliosis-related surgery with CHI, Crumlin; 100 were waiting for more than four months. A waiting time of no more than four months has been recommended by ministers for health since 2017.
Minister for Health, Stephen Donnelly, has now undertaken to convene a taskforce, to include patient representatives and clinicians, and has written to advocacy groups to get their view on the terms of reference of the taskforce.
Scoliosis support
You can find Scoliosis Awareness and Support Ireland Scoliosis Ireland at facebook.com/scoliosisawarenessandsupportire
scolawaresuppire@gmail.com 087 7781570 or 087 9739932
Read more
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‘It’s been so heartbreaking to see Liam disintegrate in front of my eyes for the past year.”
That’s what mother-of-four Pam Dennehy, from Fossa, Co Kerry, says about the deterioration of her youngest child’s health because of scoliosis, curvature of the spine.
Born with cerebral palsy and also with a serious metabolic condition called glutaric aciduria type 1, and already facing many challenges because of those conditions, the development of scoliosis last year has added extra stress to an already demanding situation.
Currently Pam is waiting to be given a date for a spinal operation to correct Liam’s curvature but because the scoliosis is causing such pressure on his organs, she and Liam, who is now 13, are ‘living’ in University Hospital Kerry (UHK) in Tralee.
“It got to the point two weeks ago where I felt that I couldn’t keep Liam safe,” Pam says.
“He has had a reflux issue because of the scoliosis since last January. His curve is to the left so his right side is sunk in on his tummy, on his intestines, so he gets reflux.
“At night when he lies down he could choke on his own fluids. Although a surgeon said that he now needs a night nurse, that hasn’t happened. I’m here because I know that if he needs oxygen or suction or resuscitation in the night that I won’t have to wait 20 minutes for an ambulance. I’m trying to keep Liam well and I’m terrified of not being able to resuscitate.”
Emergency list
Liam has already had his pre-op tests for the spinal operation in Crumlin Children’s Hospital (CHI at Crumlin) but a date is awaited.
“They tell me he is on the emergency list and that we’ll know soon but it so hard waiting. Liam is an incredibly bright, easy-going child who wants to be an author. He’s a pure joy.”
Liam is now at 92 degrees of curvature and is in constant pain while he waits for surgery.
The situation is more tense because of Liam’s metabolic condition – glutaric aciduria Type 1 – which is life-threatening.
“This means that if he gets an illness of any sort – a head cold, anything – his body is at risk of coma, stroke or death.”
Pam describes what she has to do when Liam coughs at night.
“He is 5’4” now and so am I. I have to get him up and sit him on my lap, facing him towards me and ‘be his cough’. My tummy against his enables his cough because of the scoliosis curve affecting him. It’s very difficult because he can’t assist in any way. His body is completely twisted so he is in agony. He has both curvature and vertebral rotation.”
Liam’s condition worsened very rapidly last year. From his curve being 35 degrees back then, it is now 92 degrees, his mother says.
“Once you go over 85 degrees of curvature, you’re in a very dangerous medical place. In some countries if you’re over 50 degrees you’re talking surgery. I’ve also been told this week that because he has now reached over 85 degrees, it could potentially mean two surgeries now. It was always intended to be one but they have left him too long, I believe.”
Pam uses several phrases repeatedly during the interview. ‘I had to fight hard for x’ and ‘it was a battle to get y’.
Fighting for services since Liam was nine months old has left her exhausted.
“Every single aspect of it is a battle,” she says. “You’re already burnt out from the physical aspect of things and you have other children to look after and a house to run. My brain is fried with it all and there is mammy guilt too because I can’t be there as much as I want to be for the older boys but there is nothing I can do.”
Let down
While she wants to be positive and considers herself ‘solution focussed’, Pam feels very let down by the health service.
“It’s like Liam’s case is too complicated,” she says. “Some disabilities are well supported, but not all. With Liam, who has physical disability but no intellectual disability, he literally doesn’t seem to fit into anyone’s box but yet he’s a child who needs more intensive therapies.”
Liam is in 6th class in Fossa National School but he hasn’t been able to attend since last December because his scoliosis has worsened so much.
Fighting for services since he was a baby has meant Pam frequently writes to politicians, to ministers and to the Department of Education.
“It was a struggle to get the Eyegaze computer for him when he was small, for example. Liam communicates via this, with eye movements controlling the mouse, and he uses it to do his homework, play music, draw, change TV channels and play with remote control toys.”
She is concerned about the absence of speech therapy in the past five years also. This is needed not only to help his speech but also his ability to retain his swallow.
Liam pictured with a family pet, called Dog.
“At present, Liam is spoon-fed warm, wet foods that provide the necessary 2,200 calories he needs per day.”
Pam is also waiting for a peanut-shaped physio ball for him since November 2023.
“You’re told it’s ordered or it’s not in yet... You spend all your time chasing services. Getting a stander frame for him was another challenge. There are so many false promises that you become disillusioned.”
While Pam was allotted 10 care hours per week for Liam, the carers who were sent by the HSE haven’t worked out so far, unfortunately.
“Liam’s condition is complex so it’s not every carer can do it and they have to be trained in but not being able to find someone suitable means that I have to do everything for Liam.”
Chair bound
A current struggle is getting a suitable power chair for Liam so that he will be comfortable when he is sitting. He is fully chair bound currently and unable to use a stander or walker or do any exercises due to his pain.
Liam he is now fully chair bound.
“Liam has been chair bound for a year because of the scoliosis so you’re talking muscle deterioration because of that,” Pam says.
“A brace proved very painful for Liam so a matrix seating system chair was recommended. That has involved a lot of appointments and measurements being taken to customise it for Liam. It’s designed to provide support yet allow movement and comfort within that support.
“The first one hasn’t been a success and I had to push for a second opinion and fitting. That process has gone on since March 2023 but we’re supposed to have the final fitting today.”
Over the years Liam has availed of help from the Brothers of Charity in Tralee and Enable Ireland in Cork and his school has been supportive and Pam is very glad of that but she has also had to do a lot of training herself.
“I’ve had to learn through the good and the bad of it,” she says. “I’ve learned to do physio, I’ve trained in assistive technology so that I could teach school staff how to use the Eyegaze computer. Liam is now an independent user of that, he doesn’t need any help.”
The stress of all the care is now telling on Pam, she says.
“It’s burnout, really. I hear nurses saying to me ‘look after yourself’ but how do I do that? I don’t get the luxury of just being a mum at present.”
Scoliosis is where the spine twists and curves to the side. It can affect people of any age but most often starts in children aged 10 to 15.
In around eight in every 10 cases the cause of scoliosis is unknown. This is called idiopathic scoliosis.
Less commonly it may be caused by congenital scoliosis, where the bones of the spine didn’t form properly in the womb or because of an underlying nerve or muscle condition such as cerebral palsy or muscular dystrophy. This is called neuromuscular scoliosis.
In older adults, it can happen because of wear and tear of the spine with age.
Treatment for scoliosis depends on age; how severe the curve is; and whether it’s likely to get worse with time. Many people will not need treatment and only a small number will need to have surgery on their spine.
Symptoms of scoliosis
A visibly curved spine Leaning to one side Uneven shoulders One shoulder or hip sticking out The ribs sticking out on one side Clothes not fitting well Back painTreatment
A plaster cast or plastic brace may be fitted to stop the curve getting worse until the child stops growing. Sometimes surgery may be needed to control the growth of the spine until an operation to straighten it can be done when they stop growing.
Awaiting a taskforce
327 children on a waiting list: The most recent figures from February 2024 showed that there were 327 children waiting on scoliosis-related surgery with CHI, Crumlin; 100 were waiting for more than four months. A waiting time of no more than four months has been recommended by ministers for health since 2017.
Minister for Health, Stephen Donnelly, has now undertaken to convene a taskforce, to include patient representatives and clinicians, and has written to advocacy groups to get their view on the terms of reference of the taskforce.
Scoliosis support
You can find Scoliosis Awareness and Support Ireland Scoliosis Ireland at facebook.com/scoliosisawarenessandsupportire
scolawaresuppire@gmail.com 087 7781570 or 087 9739932
Read more
Meet the Maker: Caoimhe M Flanagan
Emerging consumer trends for dairy products
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