Realities of a Premature Infant's First Year: Helping Parents Cope

We just received notice that our insurance refused to pay the $7000 claim because they determined that it wasn't medically necessary. We now have to appeal the claim, which requires a great deal of time and energy, and is an obvious financial strain.

I also know of a mother of 20-month-old twins, born at 28 weeks, who spends $450 per month on special formulas alone. This may seem extreme but even small amounts of extra costs can be burdensome to already financially stressed families.

Working parents have to deal with the difficulty of finding suitable child care. Because most pediatricians recommend that at-risk children avoid contact with large groups of other children (to reduce the risk of respiratory illness), many parents seek (expensive) child care within their homes. Just finding suitable child care for a child with special needs can be extremely difficult.

There are few resources in the community to help with this time-consuming process. Having Mackenzie has forced me to stay home and only work one 12-hour night shift per month. Having to quit a job in a dual-income home can be financially devastating.

How Professionals Can Help

Giving birth to a critically ill infant is as emotionally painful as coping with the death of a loved one or learning you have a long-term illness. Medical professionals should remember that this emotional pain happens to parents of 24-weekers, 34-weekers, or a term baby who requires extended hospitalization for a sepsis evaluation.7

The intensity may be greater for the smaller or sicker child but the emotions are similar. By preparing parents in the NICU for possible difficulties after discharge and identifying prospective sources of support, professionals can give parents an advantage in coping during the first year. Below are my recommendations on preparing families for discharge and the first months at home.

  1. Begin by helping parents identify feelings. Talk about what many parents of critically ill infants feel, such as anger, fear, guilt, and so on. Tell parents that when the crisis is over they may begin to feel overwhelmed with emotion. Encourage them to seek help through counseling or with other parents who have been through a similar experience. Parents may want to contact the national organization for families of critically ill infants, Parent Care Inc. (Parent Care, Inc., 9041 Colgate St., Indianapolis, IN 46268-1210; (317) 872-9913). This organization refers parents to related organizations and offers a variety of pre-term infant-related literature.

  2. Maintain frequent communication with the family's pediatrician or other health care provider throughout the baby's hospitalization to make the transition to outpatient care easier. Provide a complete summary of medical and nursing care (including OT and PT observations) to the pediatrician's office when the baby is discharged. If the baby needs extensive follow-up care, refer the family to a multidisciplinary clinic whenever possible where they can have the benefit of complete and managed care from various professionals. 3,4,8