Jasmin thought baby boy Ollie was fine until a routine test at two weeks old
A new mum has been told her baby has a life-limiting condition that cannot be cured on the NHS- but she wants to fly him to the USA in a bid to save his life. Jasmin Roberts, 24, says baby Ollie was only diagnosed by accident when she took him for monitoring at two weeks old.
Jasmin, from Wrexham, said: “Before Ollie was diagnosed, I was a first-time, young mum, already overwhelmed in the way that all new mums are. I was working as a customer advisor for Lloyd’s Banking Group, just two weeks postpartum, and juggling life with a newborn and a house I’d recently bought as a renovation project. It was a lot, emotionally, physically, financially, but I was trying my best.
“I’d had a horrific labour with Ollie, fourth degree tear, episiotomy, haemorrhage, two hour emergency surgery. I was still recovering when we found out about Ollie’s heart. I obviously had all the usual worries too: is he feeding enough? Sleeping enough? Am I doing this right? But deep down, I believed he was healthy. I believed he was safe. Because that’s what I’d been told.”
But then Ollie was diagnosed with a very rare and complex heart condition: pulmonary atresia with ventricular septal defect and major aortopulmonary collateral arteries (PA-VSD MAPCAs). Ollie was diagnosed completely by accident, as part of a routine prolonged jaundice screening at just two weeks old.
Jasmin’s midwife referred them to their local hospital, and as part of the screening, they checked Ollie’s oxygen saturations. It was 85%. “Everything happened so fast after that,” Jasmin said. “One minute, there was just a nurse in the room, the next, a whole team of doctors appeared and rushed him down to the PICU.
“They weren’t sure if it was sepsis or a heart condition, but they couldn’t scan his heart until the morning. So they had to starve him of milk, just in case. That night was unbearable. Listening to my two-week-old newborn scream with hunger, knowing I couldn’t feed him, it was agony. I felt so helpless. I was pumping at the time, and not even able to give my baby the milk. It was torture.”
Once tests had been done, Ollie was diagnosed with the rare condition. “The diagnosis broke me,” she said. “I felt like it was my fault, like I’d done this to him. I was drowning in guilt, grief, and confusion. I spent night after night on Google, scaring myself even more, trying to understand a condition I’d never even heard of.
“One day, I had what I thought was a healthy baby. The next, I was being told his future was uncertain, and I didn’t even know if he’d grow up at all. It tipped my whole world upside down. I developed severe postpartum depression. I was referred to the perinatal mental health team, put on antidepressants for the first time in my life, and I’ve had breakdowns bad enough to involve crisis teams.
“There were times I genuinely didn’t want to be here anymore. The pain was, and still is, unbearable. But I kept going. I had to, for Ollie. And I still am. I’m not in that place now, but it’s where I was, and it’s important people understand just how heavy this has been. No parent should have to feel that kind of fear. No child should be left without hope.”
The condition is life-limiting without surgery, and three different UK hospitals have told Jasmin they can’t operate on Ollie. They have only offered her palliative care, which Jasmin says as his mum, she can’t accept.
There’s one hope: Stanford Children’s Hospital in California, who are world leaders in treating Ollie’s exact condition, have accepted Ollie for life-saving surgery. “When we were told Ollie was palliative, that nothing more could be done, I couldn’t accept it,” Jasmin said.
“I refused to just sit there and wait for my baby to die. I already knew about Stanford in California from other mums online with children with Ollie’s condition. They’re the leading experts in Ollie’s exact condition.
“The surgeon who would operate on him, Dr. Hanley, is the same man who pioneered the surgery that could save Ollie’s life. Even Alder Hey, our UK hospital, have admitted that Stanford has more expertise when it comes to Ollie’s condition. The hardest part? The only reason we have this hope is because I pushed for it. I referred Ollie myself.
“I sent over 4,000 images, his full medical history, and communicated directly with Stanford’s international team. One nurse in our UK hospital even remarked ‘What? Did you find that online or something?’ as if it isn’t a world leading hospital. If I hadn’t done that, we would still be on a ‘there’s nothing we can do’ pathway. That thought haunts me every day.”
But the cost of Ollie being treated at Stanford is expected to be over £3m, way beyond anything Jasmin could afford alone. She’s started a fundraiser to ask people to contribute to help towards saving Ollie’s life. “I would ask people to give anything they can to save my baby’s life,” Jasmin says.
“This isn’t about giving him a nicer life. It’s about giving him one at all. The surgery that could save him exists, but for Ollie it’s only available in America. And without it, Ollie will die. With it? It’s a full repair. Ollie’s heart would be fixed.
“I’m not a charity. I’m a mum doing everything I possibly can to give my son a chance. I’m not asking for help because it’s easy, I’m asking because it’s the only way.
“Every single donation, every poster shared, every pound raised, it gets us one step closer to the surgery that could give Ollie a future.”
Jasmin wants to ask others to give even a pound if they can, explaining every small amount will help towards the immense challenge of raising £3m. “Ollie is my best friend in the whole world. He’s everything to me,” she adds.
“None of this is easy. Before all of this, I’d never even posted a photo of him online. But I’d go to the ends of the earth for my son, and right now, that means putting our story out there and asking for help. My experience of motherhood has been trauma after trauma. But if he gets the surgery he needs, if he gets to grow up, then it’ll all be worth it.
“I wish people knew how hard it is to raise a baby who turns heads for the wrong reasons. I wish they knew how much strength it takes to fight a system that won’t help him, to chase answers no one wants to give, to be both his mum and his only advocate.
“Mostly, I wish people could see Ollie the way I do, not as a rare case, or a tragic story, but as a little boy who deserves to live a long, happy life.”
Donate to Jasmin’s fundraiser here: https://gofund.me/d81583780
