Tiny Samuel Roberts was born with a severe combined immunodeficiency (SCID), which means his body is unable to properly fight off infection. Without intensive treatment in the form of a bone marrow transplant, Samuel’s immune system would be significantly weakened, leaving him highly susceptible to illnesses such as severe chest infections and pneumonia. Most babies with SCID who do not receive treatment die before their first birthday, as even a simple kiss from their mum could be enough to prove fatal.
Because SCID babies have a weakened immune system, the immediate concern is to keep them safe from potential infection. Just six weeks after he was born, Samuel was admitted to his Bubble – an 8ft by 8ft area in which he was protected by a cocoon of sterilised, filtered air until his treatment was complete.
He first underwent a course of chemotherapy to reduce the chance of his body rejecting his new immune system, before receiving a bone marrow transplant. The stem cells from his bone marrow donor should help Samuel build a new, strong immune system, which will allow him to go on to live a normal life.
Samuel’s mum, Pamela, said: “One of the hardest things was moving away from Liverpool. I have two older daughters so it split our family in half. When we were in the hospital we would send pictures of Samuel home every day so the family could keep up with his progress. The Bubble Foundation provided families on the ward with iPads and Wi-Fi so we could Skype with others who weren’t able to visit – it was a godsend. Samuel’s dad came to visit on the weekends but his sisters had to stay at home so it was nice for them to see him on video.”
“Living in a hospital setting in a strange city was a lot to get used to. When you first go in it’s quite daunting because there are lots of policies and procedures to follow, like all of the hand washing which is vital to keep the infection risk to Samuel as low as possible. You think, ‘how am I ever going to remember it all?’”
Thankfully, Samuel’s treatment went well, and he’s now been allowed to move back home to Liverpool. Samuel must be closely monitored to ensure his immune system builds back up, meaning the family must take him for check-ups in Newcastle every two weeks.
Families like Samuel’s are supported throughout their child’s stay on the ward by The Bubble Foundation. The charity provides the children with Wi-Fi, Sky television, toys and educational aids to make their lengthy stay in hospital more comfortable, whilst also funding research into better treatments for immune disorders.
Pamela continued: “The staff at the unit have been amazing – they really supported us and helped us at every step of the way through what is a really scary time. Being on my own in Newcastle, it was comforting to know there was lots of support from the Bubble Foundation, and the things they provided like the Wi-Fi to Facetime people at home make your time a bit more bearable.”