Written by Melissa R. Johnson, PhD
The world of the newborn intensive care unit is a hidden world, a place of both daily miracles and heartbreak. In the past several decades, advances in both medical and developmental care have led to major improvements in survival and long-term outcomes for babies born as early as 23 weeks. But for most people who are excited to discover that they are pregnant, what goes on in the NICU is a mystery that they would just as soon not think about.
For the majority of parents, the birth of a premie or a sick baby comes as a real shock. Sometimes there are a few days or even weeks of warning, if mom is experiencing complications or signs of early labor, though these complications themselves are often very stressful. In other cases, the first indicator that a baby is coming early is a sudden onset of labor months before the due date, or even the precipitous delivery of the baby at home or in the ambulance on the way to the hospital. All of these circumstances catapult the young family from anticipating a normal birth in a number of months, to an encounter with a tiny infant (or infants in the case of multiple birth)surrounded by technology in an overwhelming, complex setting.
Typically, parents feel as though their baby’s life is in the hands of others, and though these doctors, nurses and therapists are typically warm and caring, they are also total strangers. In my thirty years of working in a NICU as a developmental specialist and psychologist supporting families, I was always amazed by the courage, resilience, and love shown by families who often had no idea a few days earlier that their lives would be turned upside down. NICU staff members over the years have come to appreciate more and more deeply how critical parents are to the medical and developmental recovery of the baby, and how important emotional support of the parent is to facilitate the parents’ success in functioning effectively in the NICU and after discharge.
While the relationships among parents and the doctors, nurses, therapists, social workers, chaplains, medical secretaries, and all the other professionals in the unit are critical, there are many other ways that parents need support. The more parents can remain by the bedside, the more they can understand and advocate for their baby’s needs. Every hour spent holding a premature infant skin to skin (“kangaroo care”) benefits the baby’s developing body and brain.
But virtually every family faces unexpected obstacles. Practical issues such as parking costs, fuel expenses, food while visiting, child care for siblings, clothing for a tiny infant who will outgrow outfits rapidly, and life expenses when maternity and paternity leaves are not available or inadequate, add to the stress and sadness that families experience. Assistance with such needs are much more then optional extras – they can be critical to a young family taking their baby home feeling capable of facing the future.
I’ll never forget giving some parents gas cards made available through donations to our hospital, during one of many gas crisis periods when costs were especially high, and having both mothers and fathers start to cry tears of gratitude for what was basically one tank of gas to come visit their child. The work of organizations such as Me Fine, addressing the social and practical support needs of families whose children are in medical crisis, is critical in so many ways. It can truly make a difference in the long-term outcome of children and their parents as they find the strength to recover, grow, and develop together.