There’s no denying that prematurity is an epidemic. Across the globe, the rate of preterm birth ranges from 5% to 18% of babies born too soon. Globally, prematurity is the leading cause of death in children under the age of 5. And in almost all countries with reliable data, preterm birth rates are increasing. It’s expensive, too. Caring for a single preemie from birth until that baby says goodbye to the hospital after weeks or months of specialized care can cost anywhere from $200,000 to over a $1m. In the developed world, rates of survival for even the earliest babies is going up – but as a result, there is an increasing population of babies coping with developmental issues and challenges, some of which, I know from experience, can last a lifetime.
I’m grateful that my daughter Reece, who was born at 1 lb. 9 oz., is not only alive but has also thrived. My wife and I have made and will continue to make a tremendous investment of time, energy, and resources to enable Reece to reach her full potential. She never stops amazing me, considering there was a time when we didn’t know if we would bring her home, much less what her quality of life would be like if we did. We know how fortunate we are to have had the support we’ve received, to live where we do, and to have Reece in our lives.
The thousands of other parents of preemies I’ve met as a dad and through Graham’s Foundation and Parents of Preemies Day have their own stories. Stories of never having heard of premature birth or the NICU before those things became a part of their journeys. Of dealing with life and death decisions and a whole new language – bagging and bradycardia and brain bleeds and BPD. Stories of terrifying middle of the night phone calls and having to say goodbye and miraculous recoveries and finally going home.
The sacrifices moms and dads of preemies make for their children goes beyond days, weeks, or months spent in the NICU. It encompasses lost wages, miles traveled, time with older children and friends traded for time beside an isolette, and so much more. Some parents become de facto nurses for medically fragile children. Others do their best to celebrate and commemorate lives that are all too short instead of giving in to grief, as we have done with the memory Reece’s twin brother Graham who we lost after just 45 days.
Studies show that parent involvement in the NICU and beyond leads to better outcomes, but parents are often facing an uphill battle. Preemies have higher rates of ADHD and autism, and research suggests that individuals born preterm complete less education than their full-term peers. It is ultimately moms and dads who step up to make sure conditions related to prematurity like cerebral palsy, chronic lung disease, hearing loss, and blindness don’t define their kids – sometimes while coping with their own PTSD, anxiety, and depression.
Modern medicine has made survival possible for preemies who might once have not made it out of the delivery room, much less the NICU. And parents go to incredible lengths to give their babies the best possible futures. On Parents of Preemies Day, we celebrate everything these special moms and dads do for their preemies. But we must also recognize the toll that prematurity takes on the family and that much, much more needs to be invested to ensure that more preemies have productive and meaningful lives.
That’s a goal worth working toward.