Oscar was born at home 1 week before his due date. Straight away he struggled with feeding, breastfeeding was impossible as he couldn't latch on. I tried bottles but milk would come back through his nose. He failed his newborn hearing test so was referred to an audiologist. At 4 months, he saw a pediatrician. When he had examined Oscar he said he would refer him to an ENT and geneticist as his facial characteristics could point to a genetic problem. He has a small chin, low set ears, a stridor etc. He is also prescribed a high calorie milk as he was failing to gain weight. I had to take him weekly to be weighed, it was during a weigh in that his health visitor had concerns about his development and his left hand was bunched up into a fist and floppy. I then spoke to the pediatrician who referred Oscar for a brain scan which resulted in his first diagnosis of cerebral palsy 3 weeks before his first birthday. His second diagnosis was in the January 22q11 deletion syndrome (2nd most common genetic condition after downs) and something I had never heard of!! ENT reviewed him for his noisy breathing & nasal regurgitation, the noisy breathing should improve itself as he grows. They then referred him onto the cleft team who diagnosed a sub-mucoslal cleft palate. He had his first palate repair Oct 2016 and will probably need a further operation sometime this year.
Audiology were testing his hearing every 3 months and finally fitted him with hearing aids when he was 15 months old. Since then he is under the care of physio, orthotics, dietitian, respiratory, orthoptics, speech and language, cleft surgeon, ENT, audiology, and occupational health.
He is now 5 and attends a specialised school where he is thriving. His speech still has a long way to go but at school they use total communication picture boards & signing which is helping ease his frustrations.