As a parent of two premature infants with very different outcomes, I’ve experienced the NICU in its many forms. My daughter, born at 23w 4d, lived 3 weeks before dying from necrotising enterocolitis (NEC); my son, born at 25w 0d, survived and was discharged after 113 days as an inpatient. Between our two children, our family has weathered each type of respiratory support (ventilation, high frequency ventilation, CPAP, high flow and low flow), feeding support (intravenous nutrition, orogastric tube, nasogastric tube, bottle and breast) and a broad range of other comorbidities and complications, including a patent ductus arteriosus (PDA), subsequent pulmonary haemorrhage, mild intraventricular bleed and retinopathy of prematurity (ROP), each requiring treatment.
I could speak to the areas of research needing greater funding and attention, but in truth this would be biased by the diagnoses given to my own children. In my lived experience, our children would have benefitted from a more effective method to treat (or prevent) NEC infection in peri-viable infants, or criteria to predict which babies’ PDA will cause life-threatening complications. In a broader view, long term studies and follow up are desperately needed to truly add the ‘informed’ to informed consent for parents.
