How Professionals Can Help Parents of Premature Babies in the NICU and at Home

NICU doctors, nurses, and social workers can provide valuable assistance to parents of preemies.

By Diane Maroney

How Professionals Can Help

Giving birth to a critically ill infant is an 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.

(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) Be sure the NICU patient-care coordinator or social worker knows the resources in your community, including where to refer parents for services, such as child-care providers who will take children with special needs, organizations that will help pay for therapy, programs for developmentally disabled children, breastfeeding support groups, and so on. Connect parents with these programs early in the infant's hospitalization. Many NICU babies qualify for assistance from the Part H section of the Individuals with Disabilities Education Act. Part H refers to supports and services for children <3 years old and many NICU graduates qualify for these services. Refer parents to their county's Child Find Service Coordinator to initiate the programs. If it appears that the baby will be chronically disabled, the Katy Beckett Waiver for Medically Fragile Children gives Medicaid to parents who make more than $24,000 per year. This is a federally funded program that is state regulated. It is important that parents sign up for this program as soon as possible because there is often a long waiting list. Remember that in most counties, parents with children on home oxygen will qualify for a handicap sticker for their car. Whatever you can do to make life easier and lessen the stress on parents will be greatly appreciated.

(4) Encourage parents to take care of themselves, including rest, nutrition, exercise, and a balanced routine. Explain that they won't be able to care for their baby if they are not healthy themselves. Find out about insurance or community-based respite care programs. Encourage parents to find time to work on their relationships; they may need counseling or they may just need an occasional date together. Give parents a list of area counselors qualified in counseling parents in crisis situations.

(5) Be sure that parents feel ready and are realistic about taking their baby home. Give them as much education and information as possible without overwhelming them. Let them know that they can call the NICU at any time with questions and concerns. Periodic calls from the primary nurses after discharge can be very helpful and comforting, even if their only purpose is emotional support. Connect them with parent support groups.

(6) Practice family-centered care in your nurseries. Begin to empower parents during their baby's hospitalization. Give them praise and positive feedback. Let them be involved in the discharge planning. Teach parents to be their baby's advocate before discharge so they will be more comfortable speaking up for their baby in future potentially intimidating situations. Educate parents about their responsibility in the coordination of their child's care and their responsibilities with their pediatrician.

(7) Physicians and practitioners should educate themselves through literature or seminars regarding managing a family with a special-needs child using family-centered care. Contact other physicians that understand this management, as resources, when you have questions or concerns about patients. If time and cost are issues, work with insurance companies to reimburse for coordination of care.

Not all premature infants and their families experience the difficulties that our family experienced; unfortunately some may experience even more. Medical professionals rely on statistics from follow-up studies to predict how infants will progress in the first year, yet there are children who do the unexpected: the 25-weeker who has minimal sequela and the 30-weeker who has severe cerebral palsy. All parents should be educated by an empathetic hospital staff about what the first year at home may bring. In addition, concrete suggestions, support, and understanding from the care provider are essential in helping parents cope with the hidden complexities of the first year of their child's life.

Diane Maroney is an experienced former NICU nurse, a preemie mother and the co-author of Your Premature Baby and Child : Helpful Answers and Advice for Parents