DEFYING THE ODDS

How Ben continues to defy all odds

Through two undiagnosed life-threatening illnesses, Ben has been left with life-long physical and cognitive consequences and relies on the full-time care of his parents. But from such trauma has come hope, with the ten-year-old continuing to amaze medics with his progress. NR Times meets the inspirational family

After almost losing his life twice, and living with the consequences of a double leg amputation and significant brain damage, ten-year-old Ben has been through more than most in his short life. But despite the huge trauma that has faced he and his loving parents, Sally and Dan, they are all looking to the future with renewed confidence. Having come close to death through meningitis as a baby, and then again after sustaining significant cognitive and functional damage through a cardiac arrest - which medics were so certain he would not survive, they allowed him to return home for palliative care - six years later, Ben is now thriving with the support of his therapy team. With regular visits to his physiotherapist and occupational therapist, he is making strong progress, and is even looking towards being fitted with ‘stumpie’ prosthetics to allow him to stand. Despite the fact that the profound brain damage and physical impact has left Ben severely disabled, with a reduced life expectancy and the likelihood he will never have mental capacity, the family continue to find the positives in every day - and particularly in how Ben continues to defy all expectations. The outlook now could not be more different to those few short years ago, when Sally and Dan were twice warned their beloved son may not make it. “This is the happiest we’ve been in years, Ben is doing so well, it’s amazing how far he’s come,” reflects Sally. “He’s now just happily doing his thing, he is totally the boss in our house, we wouldn’t have it any other way. “But it’s been a long road, looking back on it. At the time, you just get through it because you have to, but recently I was looking through some of the things I’d kept from when he was in hospital and honestly don’t know how we did it. “On reflection, it was the most horrific thing anyone could imagine, and some of the things we saw and had to experience were things no parent should go through.” And for the family, the trauma of what happened to their son is made all the more horrific by the fact on both occasions, medics failed to realise the gravity of Ben’s illnesses until it was too late. With meningitis, in 2012, Ben was sent home from his local hospital with a supposed ‘viral infection’, despite the beginnings of a rash beginning to develop - only hours later, he was rushed back to hospital, and transferred to Great Ormond Street due to the gravity of his situation. He spent three weeks in intensive care, and more than three months in the specialist centre in total, where Ben - only eight-and-a-half months old - underwent the amputation of his right leg above the knee, his left leg below the knee and part of his right hand. “I’ll never forget that image of him after we took him back in, having known something was wrong all along. He was lying there, he was huge through being pumped with water, his skin was black. It was like a nightmare. I’ll never, ever forget it, and we’ll never get over it,” says Sally. But while Ben’s outlook was initially bleak, his recovery stunned medics. After discharge and once he settled at home, he began to progress with crawling and talking, and began attending school. Cruelly, it was just as the opportunity came to be fitted with prosthetics that tragedy again struck the family in April 2016, when Ben began to be affected by a number of problems, from sickness to lethargy, none of which were

considered to be serious. This went on intermittently until November. “Every time we went in, they could never get his blood pressure on the machine, but it wasn’t followed up and we didn’t realise how important that was,” says Dan. “He was still having ongoing treatment at Great Ormond Street, and when they realised there was no blood pressure readings, they insisted they did it manually. “When it came back as 280, they didn’t believe it, they said it was too high for a child’s blood pressure. It was only when one of the doctors tried the machine on herself and it was accurate that all of a sudden the panic set in.” Through undiagnosed and untreated hypertension, Ben began having seizures which resulted in cardiac arrest, and, in a chilling echo of four years previous, again he was rushed to Great Ormond Street. “That’s when all the madness started and there were sirens and people running in from nowhere,” says Sally. “It felt like he was being treated forever. The next time we saw him was in intensive care. He didn’t look like Ben anymore. We were

It has been a very hard road, but after we got through that first year and Ben found his new pathway, we have been able to feel much more confident

warned that the worst might happen.” Following his cardiac arrest, Ben was left with severe brain damage, renal failure, and profound cognitive and physical disability. MRI scans laid bare the level of brain damage Ben had sustained, and provision was made for him to return to a hospice near his home. “But by now it was 12 days before Christmas, our Great Ormond Street consultant was amazing and she said we could go home. Ben wasn’t well enough to go home, but given the circumstances, they allowed us to take him back home for him to pass away,” recalls Dan. But incredibly, since that time, Ben has made an astonishing recovery. Not only getting through Christmas 2016, but continuing to progress since that time, to the point he has reached today. “I remember going to one appointment and the doctor was looking at his scans. She said ‘I take it this child passed away?’ She couldn’t believe he had survived with the level of damage there was,” says Sally. “It has been a very hard road, but after we got through that first year and Ben found his new pathway, we have been able to feel much more confident. “Genuinely, he has defied expectations and he’s continuing to do really well. He is interacting with us, he understands things, and the therapy is making a huge difference.” Forced to endure repeated hospital visits for various conditions and complications over the years, Ben has been home-schooled since the outbreak of COVID-19 in March 2020, and has not been to hospital at all during that time. Both parents have given up work to care for him full-time, ensuring they can be together all the time, supporting each other in the process. “Ben is what gets us through, he’s the reason we cope and why we can do this,” says Sally. “But the worry is constant - I wake in the night all the time to check he’s still breathing, that nothing else has happened. I won’t leave him and have a lot of issues around that. “I don’t think we’ll get over what we’ve been through, I don’t think it will ever leave either of us.” Both Sally and Dan continue to be haunted y the wish they had pressed medics more on both of Ben’s serious illnesses, but instead trusted the advice they were given by doctors. “You wish so much afterwards that you’d challenged what they’d told you, but you trust that the doctors know best,” says Dan. “There are times looking back when I knew we were right, but because the doctor told us otherwise, I believed it. “And while most of the time the doctors will be right, if you have any doubts or concerns, you need to speak up about them.” “I’d say push for answers to the questions you have, don’t feel silly or like a persistent, pushy parent. Keep asking if you’re concerned about something, ask another doctor,” says Sally. “It’s so hard for us now as we see parents being told their child has a viral infection and instantly you wonder if that’s all it is, should they be pushing to see if it’s something more? People say knowledge is power, but I’m not sure that’s always true - it almost feels like we know too much after all we’ve been through. “For example, we were asked to sign a Do Not Resuscitate when Ben had his cardiac arrest - but after all he’d been through, and how he’d fought and fought and come through since he was a baby, we knew our son. Despite the advice, we could never sign that. You know what’s right for you. “I’d say never feel stupid, never be afraid to ask questions, and do what feels right.” The family are being supported by Emma Doughty at Slater + Gordon Lawyers, who is acting for them in their claim against the hospital which failed to diagnose Ben on both occasions. She took over their claim from another law firm. “We’re so lucky to have Emma, she’s been absolutely amazing,” says Dan. “We’ve only known Emma for a short time, unfortunately we went to another law firm initially and nothing happened for a long time, but Emma has made things happen so quickly. We’re so grateful for her help.”