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.9 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.
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.
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.
Practice family-centered care in your nurseries.10 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.
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.