Defying expectations

Jake was born prematurely on 26 November 2020 weighing 2lb 5oz (1.05kg) at 30+1 weeks’ gestation due to reduced movements and severe pre-eclampsia.

At 24 weeks, Jake had been diagnosed with a heart defect (Tetralogy of Fallot) after being being diagnosed with IUGR (Intrauterine Growth Restriction) earlier in the pregnancy. We knew a stay in NICU might happen.

Uncertain future

Jake’s first of many surgeries was an operation for a hernia. The day after his surgery, he started having clonic seizures. After an MRI, we sadly discovered that he had suffered a stroke. His future was uncertain. We were told he might never walk, he might never talk and he might never live an independent life.

Complications

In April 2021, Jake had his next operation: open heart surgery to fit him with a BT (Blalock-Taussig) shunt. We were still inpatients at this time, staying in the Children’s Cardiac Ward in Queen Elizabeth University Hospital (QEUH) in Glasgow. Unfortunately this surgery was also filled with complications.

Sadly after this operation, Jake developed a condition called necrotising enterocolitis (NEC) and we almost lost him. He underwent lifesaving surgery that left him with a temporary stoma bag for two years. 

6 months later….

After 181 days of incredible care from the teams at the Royal Aberdeen Children’s Hospital and QEUH Glasgow, Jake eventually came home. He has since gone on to have his stoma reversed and has had a second open heart surgery, which was successful and had no complications. 

First steps

Jake’s stroke left him with cerebral palsy. After years of physio and occupational therapy, he took his first unaided steps in 2024 and is now unstoppable! His stroke affected his speech and ability to speak. He has been learning Makaton and has a few words, including “baby” which is what he calls his little brother and best friend, Finn.

For a little boy who has been through so much, Jake is incredibly happy. He loves his family and going to nursery, doing puzzles, swimming and playing at the park. He always has a smile on his face and lights up the room. We’re incredibly lucky to have him and cannot thank the amazing team of nurses, doctors and surgeons who saved his life.

Thanks to Katie for sharing Jake’s story.