BiographyPhoebe is a twin. She is twin 1 and they were born prematurely at 34 weeks. Her sister was the poorly baby when they were born and Phoebe was doing fantastically. She moved from nicu to special care within a week.
On day 15 Phoebe had 2 major bleeds in her brain, one on each side and from this point she lost the movement in her legs and arms and also lost her sucking reflex. The next day the consultant told me that it was touch and go if she would make it through the night and if she did then she would be in a vegetative state. A few days later Phoebe woke up. She was out of the danger zone and was discharged a week later.
After a few days at home Phoebe became unwell due to aspiration of milk and her swallow was unsafe so we were admitted back into hospital to have an NG tube fitted, which later got changed to PEG then button.
When Phoebe was around 3 months old we had an appointment with the neurosurgeon who said Phoebe had hydrocephalus and she needed brain surgery. Two days later she was having EVT done which lasted 7 months. She then had another brain surgery to have a shunt fitted which only lasted 6 months and we had to go back and have it fixed as the shunt had broken. She has recently been back again but luckily it just needed an adjustment.
When Phoebe was 7 months old we attended a consultant appointment and he just mentioned that Phoebe had cerebral palsy, he thought we already knew.
From then she has medicine for stiffness, a wheelchair, standing frame and specialist seating. We have had to move house so that she can have a downstairs bedroom and wet room as she can't get up the stairs and uses her wheelchair for everything. Phoebe has had multiple hospital admissions due to her different needs. She also has epilepsy which is controlled through medicine but doesn’t always work. She is learning to communicate using PECS as she can really struggle to communicate and express what she wants and needs.
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