Jake’s parents first realised that something was wrong when he started vomiting bile at around six hours old. He was whisked away from his mum and dad and they didn’t see him again until the next day. When they did, he was in an incubator attached to wires and tubes and had undergone emergency bowel surgery to remove what doctors thought was a blockage. The surgeons took Rachel and Dave aside and explained that Jake’s condition was far worse than they’d expected, describing what they’d found during surgery as devastating. The vast majority of Jake’s small intestine had necrotised, meaning only around 15cms of it was functioning. This meant that it was impossible for him to absorb nutrients from his food.
Rachel says: “It was very difficult at that point for us to imagine how Jake could possibly survive with the problems he had. Having to find a way to tell our family that we didn’t think Jake would be with us for very long was the worst day of our lives.”
Despite the medical team’s best efforts, Jake was losing weight rapidly. By Christmas the family were taking things hour by hour. Eventually however, Jake began to gain weight as the Neonatal team administered a feed intravenously so he could absorb the nutrition straight in to his blood stream. But they were always having to find different sites to insert the long lines he needed to administer the nutrition because, as is often the case with such a small baby, his veins would often collapse, leaving very few options for providing adequate nutrition.
In March, Jake was taken to Birmingham to undergo a major procedure in which the short piece of his small intestine was cut in half to make two lengths. These were then re-joined, effectively doubling its length.
On June the 19th after a period of recovery, this time back at the Noah’s Ark Children’s Hospital for Wales, Jake had progressed enough to go home where his parents have learnt to manage his needs themselves. Jake’s gut is slowly and gradually learning to adapt and grow and over time will hopefully learn the function as it should. Jake still makes several visits a month to Noah’s Ark, and has been re-admitted 3 times since going home.
Doctors had initially feared that Jake would spend his first birthday in hospital. But thanks, say his parents, to the incredible care he received, Jake made it home early. He has since been able to enjoy trips to the seaside and a family holiday, things his parents feared they would never do with him as a baby, if at all.
Rachel says: “As a family we can’t do enough for the neonatal unit for getting Jake through those first few months of life, when things looked so bleak for him. The neonatal team came to feel like a family who supported us as parents as much as they cared for Jake.”