Prematurity can be defined as birth before 37 weeks completed gestation. But for my family it is better defined as a constant leap into the unknown, our daughter forging her own path, in her own way, and in her own time. Born at 36 weeks and only a little over 3 lbs following intrauterine growth restriction, her early life was a somewhat overwhelming whirlwind of low blood sugars, inability to regulate temperature, feeding difficulties, jaundice, and episodes of apnoea, later to be joined by recurrent infections. Parenteral nutrition, incubators, phototherapy, nasogastric tubes and extensive blood tests and monitoring became her norm. This then gave way to frequent hospital visits and admissions for yet more infections, and then to delayed developmental milestones. Although now a healthy and developmentally ‘on track’ 3 year old, prematurity continues to impact our daughter. She has been placed in a different school year group to that which she should have been born into, has a petite stature, and a clutch of fears around medical staff and environments which she cannot explain, but with which we can increasingly draw links with her early experiences. For my husband and I it means living with the constant unknown; the dreaded possible longer term impacts which we were told may or may not come to fruition.
Through all of my daughter’s early life, one fear overrode all others—was she in pain? If so, how could this be reduced, and how did I know that pain relief was working? There seemed so much uncertainty amongst the clinicians whom we trusted implicitly about this, and having since spoken to a multitude of parents and clinicians this seems a genuine unknown. At the time I tried to prepare for a range of outcomes, but the one that I could not reconcile with myself was that she had suffered. To this day certain smells and sounds, that after much reflection I realised link with the NICU, produce a strong fear response in my daughter, and although I have no way of knowing, I question why this is and fear that I know the answer. Research in this area would be welcomed by many parents I am sure, and I am heartened to hear that Bliss, the national charity for babies born premature and sick, are funding research in this area.
