New research highlights economic and employment challenges for parents of medically complex babies

Parents with babies born preterm or with low birth weight face significant economic and employment challenges, according to new research published in JAMA Pediatrics.

The study, led by Erin Von Klein, MD, a neonatology fellow at Monroe Carell Jr. Children’s Hospital at Vanderbilt, reveals that 30% of parents with a very low birth weight baby (under 1,500 grams or 3.3 pounds) have had to make an employment decision based on their child’s health and the required ongoing care after discharge from the neonatal intensive care unit.

"The lower the child's birth weight, the more likely a parent was to make one of these decisions," said Von Klein. "Of parents with a very low birth weight baby, 20% had one parent who left the workforce altogether due to their child’s health care needs."

The study highlights that having a preterm baby often forces parents to consider leaving their job, a decision that typically involves changes to health insurance plans and networks, and resets the annual out-of-pocket costs a worker incurs.

The economic ramifications extend to babies who have a low birth weight (1,500-2,499 grams or 3.3-5.5 pounds) as well: 20% of parents with a low-birth-weight baby made an employment decision based on their child’s health. In comparison, the health of a baby born at term impacted parents’ decisions 13.4% of the time.

Von Klein’s experience in the NICU during her residency and fellowship underscored how having a medically complex baby changes parents’ lives and shapes their identity as they adapt to a new medically and economically challenging reality.

“I noticed so many parents were either leaving the workforce, quitting graduate school, or not finishing college when their infant received a diagnosis of medical complexity. Often people have children before they are in their economic prime, so if their baby has a lifelong medical complexity, the parents fall behind in the workforce, which impacts their health and their children over a lifetime,” said Von Klein.