BiographyNed was born via cat 1 emergency c section at 28 weeks in very poor condition. He was born with bilateral grade 4 brain bleeds, sepsis, collapsed lung, hole in his heart and very difficult to manage hypotension. Before we’d even laid eyes on Ned we were told about the condition he was born in, given the worst case prognosis and advised to withdraw care. My desperately longed for child.
But Ned clung on to life. However, after being transferred to a higher level NICU, on day 6, we were told our baby was so sick, we wouldn’t be bringing him home. My heart shattered into a million pieces and I begged the doctors to “throw the kitchen sink” at him. They didn’t think he would survive the journey but he did. Slowly, he started to prove the doctors wrong and on day 13, came off the ventilator and onto c-pap, then 2 days later onto hi-flow. He had his first emergency surgery at 35 weeks for an infected hydrocele. He eventually came home 1 week before his due date, weighing less than 5 pounds.
He had double hernia surgery in June 2017. Starting in July, Ned`s head circumference started to increase rapidly and he was eventually diagnosed with hydrocephalus as a result of his brain bleeds at birth. He had his first emergency brain surgery on a Saturday in September 2017. The device fitted very quickly failed and he was in theatre again days later having another emergency brain surgery. This shunt failed again and another emergency brain surgery was performed in December 2017.
Ned has quadriplegic cerebral palsy which affects his whole body. He is unable to sit unaided and requires full support for all activities and cares.
In February 2019, Neds seizures returned with a vengeance and he was placed in an induced coma at our local hospital and transferred to a PICU facility. Ned`s epilepsy is diagnosed as drug resistant and he has unfortunately been placed in an induced coma on many occasions over the past 5 years. He has been assessed for the brain surgery for epilepsy at GOSH, however, recent MRI images show further damage to Ned`s brain and he is therefore not a suitable candidate for the surgery.
Due to poor weight gain and sensory difficulties, including a massive oral aversion, Ned had a gastrostomy fitted in July 2023.
Ned has optic nerve damage to both of his eyes which has left him severely sight impaired.
Ned is now almost 8 years old. The road for him isn’t easy, however, he is an absolute joy. He is generally, a very happy, smiley boy with a very strong willed personality! He may be non verbal, but he will let you know if he does or doesn’t like something!
|
