Little Toby Wornham was diagnosed with an extremely rare life-threatening condition while still in his mother’s womb, and was only saved thanks to a pioneering treatment
Smiling Toby Wornham looks the picture of health, but he is one of only 50 people in the world known to have an ultra rare heart condition.
After his heart defect was detected during mum Jenny Wornham’s 20 week scan, his life was saved by a tiny umbrella-like device.
Jenny tells The Mirror: “We feel very lucky. If you met Toby, you wouldn’t know what he has been through.”
Jenny, 30, who lives in Hampshire with her shipping manager husband Connor, 31, Toby and their eldest son, Arthur, four, says doctors picked up a problem and identified an extra pulmonary blood vessel during her scan, which was diverting blood away from her unborn baby’s lungs and putting an impossible strain on his heart.
“‘It was such a shock when we heard what was wrong with Toby. We had been so thrilled when I had fallen pregnant with him and Arthur was so excited to be getting a sibling.
“But now we were being told that he had a life-threatening issue with his heart and we didn’t know what the future was going to hold.”
The tot was diagnosed with a condition called pulmonary arteriovenous malformation (PAVM) – an abnormal connection between pulmonary arteries and veins in the lungs. It leads to reduced oxygen levels in the blood and potential blood clots, leading to strokes.
It’s so rare that the hospital cardiologist told the couple he had only seen one case like it in his career, with fewer than 50 such cases known of across the globe.
Miraculously, the condition was only detected because Toby was so wriggly in his mum’s womb that the sonographer had to take extra time with the scan – and spotted something wasn’t right.
“It was a miracle it was picked up on the scan at all. It would have been life threatening for him if he’d been born without being diagnosed first,” says Jenny, who runs her own art business.
Jenny was referred to Southampton General Hospital, where she was monitored until Toby was born in October 2024, weighing 7Ib 10oz.
Surgeons were hoping he would get to five days old before he needed lifesaving surgery, but at just three days old his condition deteriorated.
Medics operated immediately, inserting a tiny 7mm cocktail umbrella-like device known as an MVP.
The appliance is designed to expand within the body, plugging Toby’s extra blood vessel, in order to stop blood flow and relieve pressure on his heart. It will remain in him for life.
“He was so tiny, and to see him needing surgery was heartbreaking. When he came back up after the operation it was traumatic – he was covered in tubes and wires.”
But after ten days in hospital, Toby was allowed home. He has now made a full recovery – although initially, took aspirin daily to keep his blood thin. Doctors will continue to monitor his progress over the coming months.
“Toby idolises his brother; the two of them have such an incredible bond,” smiled Jenny.
“And now we’re looking forward to the future with our miracle boy.”