Charlie is my third child to be born with an unbalanced translocation of chromosomes. My first child, Shaun, was stillborn at 39 weeks. Charlie has an older sister, Caitlin, who also has the same rearrangement with both physical and mental disabilities, although not as severe as Charlie. Her original prognosis was might not walk, might not talk! She has surpassed this and surprised us all.
Charlie has undergone many operations since he was just 2 days old! He has had X-rays, ultrasounds, DMSA scans, CT scans, MRIs. He's had ops on his boy bits, Inguinal hernia repair, gastrostomy inserted, cleft palate repair three times, not long after the first repair Charlie got pneumonia and needed to be intubated which broke the repair but thankfully saved his life! The second repair he suffered a serious infection so had to go back for his third repair! Charlie has had his spinal cord detethered with as much as was safe to remove of the sacral lipoma. However he was unable to urinate so he had a SPC inserted. This has since been removed! He has had a run of ambulance admissions from mucus plugs and absences and since had epilepsy diagnosed. He is extremely susceptible to chest infections which also results in frequent stays in hospital. He has also recently suffered a serious water infection which resulted in him being admitted to hospital for a week and was discharged last weekend.
Despite all of the above he is a happy little boy, full of smiles and brings a lot of love to us all.