Trisomy 18 is the second most common autosomal numerical chromosomal disorder, having an incidence of 15 per 100,000 live births. Historically only about 10 percent of affected babies survive past their first birthday.
Vital Pediatrics for Complex Kids, LLC has cared for 7 babies with Trisomy 18 in a 2 1/2 year period. Among these, 3 have died, all in the first six months of life. Two were receiving concurrent care on hospice. One had been followed prenatally.
Two children, ages 2 years and 4 months, respectively, are benefitting from multidisciplinary medical care, rehab, developmental intervention, and palliative support. A third survivor's parents discontinued her palliative care at age 1 month. A fourth patient, age 2 months, is on a ventilator with pneumonia while awaiting cardiac surgery.
Our experience endorses a rigorous problem-oriented approach and careful re-assessment of goals of care as the trajectory of the condition changes. We have noted a sense of satisfaction in caregivers and family members from these interventions.
See an article from The American Journal of Medical Genetics that describes the experience with palliative care at Boston Children's Hospital and Great Ormond Street Hospital. Among 58 patients in both hospitals, the only significant difference was in the number of children receiving cardiac surgery (37 percent at Boston Children's and 0 percent at Great Ormond Street) p=.001.