Jamie was born at term following a normal pregnancy. He didn't look like I'd imagined, he was A LOT smaller than my first born & his immediate oxygen requirements gave cause for concern. He didn't come home for 2 weeks while we tried to establish a feeding regime and feeding difficulties continued in the following months at home until he had to be taken back into hospital for an NG tube; he was failing to thrive.
Feeding issues continued for many years and several different means were tried until a GJ tube & fundoplication were were done. Jamie has had many hospital admissions, particularly in the first 6 or 7 years of his life. Besides surgery to place his feeding tubes, he has had his tonsils & adenoids removed and open heart surgery to repair an ASD. Serious infections have also led to hospital admissions, 2 of which resulted in respiratory arrest and another (when he had sepsis) leading to full cardiorespiratory arrest. At this point Jamie went blind, deaf & his liver failed - it is beyond miraculous that he survived!
There are roughly just 250 children worldwide with a diagnosis of Bohring-Opitz Syndrome (BOS); Jamie is the only one in Ireland (North & South) but true friendships have been formed online with other BOS families.
Jamie can't walk or talk, he has epilepsy, scoliosis, congenital heart disease, dystonia, compromised hearing & vision, obstructive sleep apnoea, gastroesophageal reflux disease & he's the size of a toddler. He is the strongest, bravest, most loving little boy. He goes to school every day and to NI Children's Hospice for respite. We love him beyond measure & we wouldn't change him for the world x