Jamie’s Journey

Jamie is our great nephew who you will all be truly inspired by!! This little fighter has spent the majority of his 5 months in hospital, tackling everything thrown at him!! We have set up this page to enable Jamie to have everything he needs to help him when he returns home.

Here is Jamie’s story,

Jamie was born prematurely on 8th November 2023 where, shortly after his birth, he suffered a seizure and was rushed to Southampton hospital by ambulance. On arrival it was discovered that he had suffered two very large bleeds on his brain during the pregnancy which had left his brain badly damaged and his ventricles completely blocked. In a healthy brain the ventricles provide a space for Cerebrospinal fluid (CSF) to drain away from the brain, providing nourishment and protecting the brain from pressure and infection. Due to the bleed in Jamie his CSF could not drain away and instead accumulated around his brain, causing a rise in pressure and led to him developing Hydrocephalus.

Because of his unique situation, Jamie required a shunt but could not be fitted with a permanent one due to his blocked ventricles. Instead, Jamie was fitted with a novelty ‘temporary shunt’ which would drain into a pocket on top of his head. This procedure removed the need for regular lumbar punctures and allowed Jamie to go home after a month in the NICU. However, this plan shortly failed as the pocket created began leaking due to an abundance of pressure and Jamie was admitted back to hospital a few days later with the need for a permanent shunt to be fitted which would drain into his tummy despite his blocked ventricles.

After a mere 12 days at home following the placement of his permanent shunt, Jamie became really unwell and was admitted back to Southampton Children’s Hospital where he was discovered to have developed meningitis and sepsis as a result of the period in which his temporary shunt was leaking. He immediately had his permanent shunt taken out in replacement of a drain which drained into a bag on the outside of his body and began a two-week course of heavy anti-biotics provided through a longline which took it directly to his heart. Once he fought off the infection he was fitted with a new permanent shunt which once again drained into his tummy. Jamie has had further infections and visits to the hospital undergoing multiple surgeries. Since the 8th November this little boy has not only defied the odds with his brain injury, proving all the doctors wrong and thriving in areas once believed to be impossible for him, he has had to endure several MRIs, both sedated and awake, ultrasounds, lumbar punctures, feeding tubes, 10 brain surgeries, brain drainage procedures and has had minimal days at home. We don’t know what the future will hold for Jamie as we learn to meet his needs and support him in every possible way as we follow his journey, but what we do know is that this little boy does not shy away from a challenge – he really is our little superhero.

Jamie and his inspirational mum (Carla) and dad (Jack) have been so strong throughout this difficult time. It is difficult to know at this stage what Jamie will need in the future therefore we are starting fundraising to help with any equipment, specialist care or support Jamie and his family will need now or in the coming years.

Darren & Kate