The parents of a disabled boy with a life-threatening heart condition say they are in a race against time to save his life after the NHS allegedly refused to perform surgery on their son.
Louis Dagger was born on March 1, 2021 with DiGeorge syndrome, a condition caused when a small part of chromosome 22 is missing, which led to a congenital heart defect.
The now four-year-old underwent surgery at Bristol Children’s Hospital aged just six months in a procedure which went two-thirds of the way to fully repairing his heart.
Despite the success of the procedure, Louis suffered a cardiac arrest four months later after developing sepsis when his feeding tube malfunctioned and his medication stopped being absorbed. He was left with a hypoxic brain injury and developed critical care myopathy.
Louis was discharged to his home with his parents, Ian and Helen, and five older siblings in Merthyr Tydfil after a 17-month long stay in hospital. He does daily physiotherapy at home and has regained some movement in his arms and head, and is advancing well neurologically.
But, after a relatively healthy two years, Louis contracted H1N1 avian flu and, when doctors at the University Hospital of Wales in Cardiff carried out tests, they discovered that the plastic conduit fitted during Louis heart surgeries had narrowed as he had grown.
Louis mother, Helen, said this had been planned for, and it was part of Louis surgical plan for it to be upsized.
She said doctors then contacted Bristol Royal Hospital, who are experts in cardiology, to discuss further surgery. But, the hospital declined to carry out the surgery – a decision Helen believes is down to Louis neurological disability.
Now, she and her family are desperately trying to raise the necessary funds to pay for the surgery themselves either in the UK or the US in a race against time to save Louis life.
Louis Dagger was born on March 1, 2021 with DiGeorge syndrome, a condition caused when a small part of chromosome 22 is missing, which led to a congenital heart defect
Louis recently contracted H1N1 avian flu and, when doctors at the University Hospital of Wales in Cardiff carried out tests, they saw there had been some further damage to Louis heart
Parents Ian and Helen are desperately trying to raise funds for Louis treatment
Louis underwent surgery at Bristol Children’s Hospital aged just six months in a procedure which went two-thirds of the way to fully repairing his heart
Louis devoted parents, Helen and Ian, are desperate to raise the funds for surgery
Louis was discharged to his home with his parents, Ian and Helen, and five older siblings in Merthyr Tydfil after a 17-month long stay in hospital
‘From the moment he was born, Louis has been fighting for his life’, she said. ‘He had surgery in 2021 at Bristol Children’s Hospital which was two-thirds of the way to fully repairing his heart. At the time, the consultants were happy with how it went. They told us there was no reason why Louis could not go on and lead a healthy and normal life.
‘After the repair in 2021, he had a cardiac catheterisation to check the outcome, and that was when they told us it had exceeded expectations, and he had his NG tube fitted in Bristol. Unfortunately, no one in Cardiff or Merthyr were familiar with it and it failed. His medication stopped working and he went into septic shock.
‘He had a cardiac arrest in 2022, a few weeks before his birthday. Cardiff were brilliant and they pulled out all the stops to save him. We were there on our knees begging them to save him.
‘His heart recovered really well and was back to pre-arrest state within 48 hours but unfortunately, he had a hypoxic brain injury as a result and developed critical care myopathy. We do daily physiotherapy at home now and he has regained some movement in his arms, and he can now turn his head.
‘Over time, he has really developed neurologically. He’s very cheeky and has a social smile and is doing well. He was finally getting to experience a life that every child deserves.
‘He contracted H1N1 and the doctors at Cardiff carried out an Echocardiogram (Echo) saw there had been some significant narrowing in conduit in his heart. They called Bristol and said we needed to go there because they are experts in cardiology.
‘But Bristol told them no and said there were no more plans for surgery for Louis. They’re attitude totally changed after the stroke – they used to say there was nothing they wouldn’t do for Louis and always told staff in Cardiff to pull out all the stops.
‘We were completely unaware of all this until Louis became poorly with the flu. We were told just before Christmas and we feel we’ve been kept at arms length with updates. We aren’t getting answers we have been chasing, we can’t get a discussion going and they have cancelled meetings with us. We honestly don’t know who is leading the decisions now.’
Louis is the youngest of six children and is ‘doted on’ by his older siblings
Louis turned four earlier this month, defying all the odds stacked against him
Just before Christmas, the family were informed that there were ‘no further plans’ for more surgery
Louis family are now trying to raise the funds for the surgery with a JustGiving page, while dad Ian has even signed up for a charity comedy night
All funds raised are set to go towards Louis treatment, here in the UK or abroad
A meeting has since been arranged with both Cardiff and Bristol hospitals, set to be held next week.
‘We just feel they have just sent him home to die when there is a treatment available’, Helen added.
‘He’s come through so much, and he’s so strong and happy and content. Louis is not just a medical case, he is a beloved son, a brother, a fighter, and a little boy who has already proven his strength time and time again.’
Louis family are now trying to raise the funds for the surgery with a JustGiving page, while dad Ian has even signed up for a charity comedy night.
At the time of writing, just over £800 had been raised.
‘Louis is doted on by his siblings’, Helen said. ‘We have an 11-year-old boy and they are thick as thieves – they are always together.
‘The kids were brilliant when it all happened at Christmas. We have always been honest with them and they have kicked into gear to help with fundraising. But it is very, very difficult as parents. We are shattered.
‘Ian is working flat out to raise funds and awareness. He’s even signed up to do a charity comedy night, which is totally out of character.
‘All we are asking is for donations for a child who has been doing really well and is a much-loved member of a large family. Any funds raised will go towards Louis’s fight for life and surgery either in this country or abroad.
Helen has said she and her family feel that Louis has been ‘sent home to die’
Ian is set to take part in a charity comedy night in a bid to help raise awareness and funds
Louis family are desperate to raise the funds which could pay for the life saving surgery
His mother says that her youngest son ‘deserves to grow up in his family’s arms’
‘Everything we do with him; every nice memory and every nice smile hangs over you. You just can’t switch off and be with him and enjoy him as you always worry that it could be the last time.
‘Louis is full of love, laughter, and an unbreakable spirit. He deserves to grow up in his family’s arms, surrounded by those who cherish him’.
Dr Rebecca Maxwell, Chief Medical Officer for University Hospitals Bristol and Weston NHS Foundation Trust, said: ‘We will always act in the best interests of our patients. Compassion, dignity and respect are at the heart of every decision we make about the right approach to treatment for those in our care. It would not be appropriate to go into specific details regarding Louis.’
MailOnline has contacted Cardiff and Vale University Health Board for comment.
You can find the JustGiving page here.
