Alfie was born by emergency c-section at term due to distress. We already knew he had a hole in his heart from the 20 week scan. He was in NICU for a week with feeding difficulties. Three weeks after he was born we got a call to go back to the hospital to discuss some tests which were done during his stay on NICU. This is when we got the diagnoses of 1P36 deletion syndrome which comes with a lot of issues. Visual and hearing problems, heart defects, epilepsy, global delay, kidney problems, low muscle tone (the list goes on).
At 9 weeks old Alfie had his first open heart surgery. A PA band was placed and Alfie seemed to be doing very well except for feeding. He was too tired to feed and using too many calories so a NG tube was placed. Two weeks after surgery he started having seizures and was diagnosed with epilepsy. In 2019 he had his first heart attack and was transferred to PICU in Southampton where he went on to have another two. We spent 6 months in PICU as he lost oxygen to his bowel and brain. He had to have bowel surgery and a stoma bag fitted and a brain MRI showed he had suffered brain damage which has affected his vision.