In his short life, four year-old Sebastian has spent more than 700 consecutive days in hospital, endured 500 dialysis treatments and gone through so many surgeries and procedures that his parents have lost count. Before Sebastian was born, he was diagnosed with gastrochisis, a rare disorder in which a small defect in his abdominal wall and bowel caused leaking. “The doctors told us there was nothing they could do until the baby was born and even then there could be little hope—it would basically be palliative care,” says his mother, Jasmine, 29.
How we helped
At a home visit, I assessed Sebastian’s and his family’s needs. With so many factors at play, I thought it was important to bring the care team together to plan Sebastian’s transition to school in September, 2009. The team developed a plan with the family that included an assessment for additional supplies and equipment at the school. To support his transition the family agreed to start Sebastian at school 2 days a week initially then increase it to five days week. I also made arrangements to have a paediatric shift nurse to provide care to Sebastian at school. I worked with our medical supply team to ensure Sebastian’s need for large quantities of medical, IV and exceptional supplies could be met.
Sebastian’s parents are very happy with the care and support they received from the care team. “Receiving a drug card and the necessary medical equipment is an enormous burden lifted from us.” “We are especially delighted that Sebastian will be able to attend a French school in September and not the recommended school for special needs children,” says Jasmine.