Daisy Lowe was born 8 weeks early. She was immediately diagnosed with Pierre robin sequence and remained incubated for the next 7 weeks. During this time she had numerous desaturations and episodes requiring bagging and masking and she required regular suctioning. I was adamant that she could not swallow and centrally she was referred to ent. However before the referral took place she was taken off all her monitors and at seven weeks old, in the middle of the night, she choked on her own secretions and suffered a cardiac and respiratory arrest. I nearly lost her. She was ventilated and it was not thought that she would make it through the night….. However being the tough little cookie she is she got stronger and stronger and came off her ventilator. She had suffered severe brain damage and I was then told she would be vegetative for the rest of her life…..
At last the ophthalmologists diagnosed her with moebious….. She has all the classic symptoms…. She remained in hospital for the first six months of her life. She now has severe hie and complex epilepsy and has very complex needs however….
My daughter can see, she loves watching Mr. Tumbles, and In the night garden, she loves swimming and cuddling. She has an enormous temper on her!! She can stand and sit assisted. She is far from vegetative!!! She is the light and soul of my life and an inspiration to most adults!!! She is my true hero!!!!
Many Thanks! – Kath Lowe