BiographyDaniel was born via a crash section as a result of a uterine rupture. He was deprived of oxygen during this time and suffered an HIE and was born not breathing. He was intubated and cooled to try limit the brain damage caused by lack of oxygen. While in intensive care he had no signs of any brain activity and suffered several seizures due to birth trauma. He was tube fed via an ng tube and then gradually warmed up. Once he was warmed up he started to show some signs of brain activity. He then had an MRI scan which showed extensive damage on both sides of his brain to his basal ganglia. This part of your brain controls all your moments both voluntary and involuntary. I was told that based on the scan results and how Daniel was presenting he was showing signs of an evolving motor disorder which was later diagnosed as cerebral palsy.
Daniel has quadriplegic cerebral palsy and relies on others for all his care needs. He is non mobile, non verbal, doubly incontinent and tube fed. He’s required medical intervention and support since birth.
He was transferred from the maternity hospital to the neurological team attached to the children’s hospital. He developed a cerebral cry which is a very high pitch brain damage cry that he did non stop for hours and this is where his journey with multiple medications began. He then began to experience severe pain and vomiting while being fed and was put under the gastro team. This resulted in numerous efforts and medications to try help Daniel tolerate milk feeds none of which worked and led to failure to thrive. The blended diet was suggested by his consultant when he was old enough for food as a last attempt to feed him. This has worked and he gets blended food down his tube. He now has a mini button in his stomach to feed him into.
Daniel has had multiple surgeries over the years mainly for his stomach, he’s had his hamstrings and hip abductors lengthened, teeth removed due to decay caused by severe reflux and his salivary glands removed to stop choking and aspirating overnight.
Daniel needs 24 hour care and is regularly admitted to hospital for IV fluids when he hits repeated vomiting cycles. As a result of his gut issues he is now under palliative care where they are managing his gut in the best way possible but there is no cure. It is expected that his gut will eventually stop working but there is no expected time scale for this.
Daniel has good understanding and understands when you speak to him. He is learning how to use an eye gaze communication device and can use his eye to eye point and touch your hand to answer yes, no questions. Despite all of this he’s generally a happy boy who enjoys life.
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