A family have been left devastated after their three-year-old son was “denied” potentially life-saving heart surgery by doctors. Louis Dagger was born with DiGeorge Syndrome, a complex medical condition that caused him to be born with a congenital heart defect. According to his family he needs heart surgery to ensure that his body continues to get enough oxygen. But after suffering one blow after another, they have now been denied that lifeline.
His parents Ian and Helen say their greatest concern is not having enough time to fight the decision that turned their lives upside down. “This is devastating as he has fought so much and isn’t willing to give up on himself, so why should the medical profession,” they said.
Louis spent the first 17 months of his life in hospital, undergoing two open-heart surgeries at just six and seven months old. Just a month before his first birthday he suffered a traumatic 20-minute cardiac arrest.
But his family finally thought he was finally doing well at home in Merthyr Tydfil, surrounded by his five older siblings. Then just days before Christmas he was admitted to ICU at Noah’s Ark Children’s Hospital in Cardiff after contracting H1N1, a form of flu.
Despite his now compromised immune system the little boy is recovering from his latest ordeal, but in the aftermath of it the medical team at Cardiff found that his conduit, a small tube used to replace damaged heart tissue that had been fitted when Louis first underwent heart surgery, had narrowed. And so once again Louis would require surgery.
Ian and Helen always knew that further surgeries would be part of Louis’ future and were ready to discuss the next steps. But when doctors contacted Louis’ cardiology team at Bristol, the family were told the “heartbreaking” news that surgeons would no longer perform the surgery due to Louis other medical conditions – his hypoxic brain injury and tracheostomy – making the operation too risky.
Ian said: “The decision has devastated us as a family. It’s just horrendous.
“He’s exceeded expectations from day one really, that’s why we are so upset that they’re giving up on him. We’re not naïve and understand the risks and benefits [of the new surgery] and that the benefits have to outweigh the risks. But if he doesn’t have the heart conduit replaced, we will lose him.
“I’m not saying next week – it could be months or even years, we haven’t been given a timeline. But when the time comes, are they still going to say no, when the benefit is he lives and the risk is he dies? They’ve got to do the surgery.”
Ian said that Louis had recently been doing “really well” at home
(Image: Ian Dagger)
Louis with mum and dad, along with his five older siblings
(Image: Ian Dagger)
Louis’ hypoxic brain injury was caused by the 20-minute cardiac arrest he suffered at 11 months old, something his parents put down to the failure of a PEG/J device – a feeding tube – he had been fitted with.
The device was fitted at Bristol Children’s Hospital in January 2022, but problems arose when Louis returned to Cardiff as the NHS fits a different PEG/J device in England, meaning that Welsh medical teams were not sure how to use it.
Louis was transferred to Prince Charles Hospital in Merthyr where he was preparing to be discharged when it was found that the device had failed, meaning Louis had not been getting all the medicine and nutrition he needed for up to 10 days. The family believe the failure of the device contributed to Louis then contracting sepsis.
He suffered several febrile seizures and was intubated before being transferred back to Cardiff. However after arriving, he suffered a cardiac arrest which lasted for 20 minutes.
“It was horrendous,” Ian said. “All I heard was Helen scream on the phone to say ‘Ian, get over’. That was all I heard and I ran across the road to ICU. I was met by the team working on him – there were probably 30 people around his bedside and I just remember there being four people on his arms and legs checking for a pulse, another person bagging him while someone else performed chest compressions.
“The whole ward was there working on him. Other parents were in tears. They were opening the doors and rushing me in, but walking into that was absolutely horrendous.”
Louis with mum Helen
(Image: Ian Dagger)
(Image: Ian Dagger)
Louis was heavily sedated for a number of weeks, and his family were preparing for the worst. At one point there was a suggestion that one of Louis’ legs would need to be amputated.
Ian said: “His eyes were rolling in the back of his head. With his neurology, doctors told us to expect the worse and that this might be the best Louis would get. That was devastating – seeing how he was, he was not moving, his eyes flickering, he was struggling to breathe. Every time they took his intubation tube out of his throat, he would collapse. He was in a very bad way but he kept on fighting and proved doctors wrong.
“He’s now smiling, recognising us and remembers things that we tell him. He chooses things with his eyes – if you ask him which toy he wants, he’ll look at them both and make a conscious decision, before looking at the one he wants.”
Ian said that refusing to do the surgery due to Louis’ brain injury and tracheostomy is “effectively signing a death warrant for him and making him terminal because he’s disabled, which is horrendous.” He also explained that Louis has had surgeries since the brain injury, so is confused why this is such a risk factor for the heart surgery.
Louis was eventually stable enough to be discharged just before Christmas in 2022, after spending the first 17 months of his life in various hospitals. The family, who are originally from Devon, uprooted their lives and moved to Merthyr when Louis was born for them to be closer to him while he was originally being treated in Bristol.
The family have depended on Ronald McDonald House, a charity that provides free accommodation for families on the hospital site in Cardiff and communal areas for families to spend time away from the ward.
Ian and Helen are able to stay there while Louis’ oldest brother stays home with the other children.
Ian said that the period of time where Louis was first in hospital was “horrendous”. The family were adjusting moving to a new country, living out of hotels and trying to visit a very poorly Louis during Covid, all while juggling home schooling Louis’ siblings on the computers at Ronald McDonald House.
Despite the challenges, the children are all doing well in school and want to help their parents fight for Louis to get the surgery. Ian said: “They’ve had to manage everything other children have to alongside everything going along with Louis. It’s such a challenge but they’ve risen to it amazingly.
“They love him so much so it’s been amazing while he’s at home. He’s a massive part of the family. He waits for his siblings to come home from school and they rush straight to him. They don’t see his disability, they just see Louis.
“Even in hospital, whenever the kids went in to see him in hospital, his demeanour, his stats, his outlook, all just got so much better.
“There was one instance around his first birthday when, even though he was sedated, the kids came in and his saturation levels went through the roof. When they left, they went down again. It was clear that the kids being there helped him and they’ve really brought him on.”
Louis’ siblings visiting while he is in hospital
(Image: Ian Dagger)
(Image: Ian Dagger)
When Ian had to go back to Ronald McDonald House to tell the children that Louis was no longer going to get heart surgery just before Christmas, he said they “wouldn’t stop crying”. Louis’ youngest sister Primrose, who is six, even started looking for private hospitals who could carry out Louis’ surgery.
“They shouldn’t have to do that,” Ian added. “They’re fighting for him too. It breaks my heart to see my kids doing that but I’m proud of them for what they’ve done.” For the latest health and Covid news, sign up to our newsletter here
Ian explained that the family’s greatest concern is that they don’t know how long they have with Louis to fight the decision. As Louis’ brain injury happened 18 months ago, they questioned why they have not been told since that further heart surgery was not on the cards.
“We could’ve been dealing with this decision 18 months ago if they’d have told us at the time of his brain injury,” Ian said. “We could’ve spent all that time fighting for Louis, speaking to lawyers, getting more information, rather than at the last minute when we’re fighting against time we may not have.”
The family are consulting with lawyers and are looking into their next options. They have set up a GoFundMe page to raise money to try and get Louis surgery elsewhere, whether it be in the UK or abroad.
They are hopeful that Louis will be able to return home in the coming weeks so they are able to be together as a family, where they can “make as many memories a possible”. However, Ian said they will live with the “constant worry that Louis may take a turn for the worse and his heart won’t be able to take it without the surgery.”
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.”
A spokesperson for Cardiff and Vale University Health Board said: “As a Health Board we are unable to comment on individual patient cases. However, we would ask Louis’ parents to contact our concerns team who will be able to discuss any concerns they have around their son’s health care.”