The American Academy of Pediatrics (AAP) is a national organization of pediatricians that is devoted to the health and well-being of infants and children. The American Academy of Pediatrics Web site has many policy statements regarding the proper care of infants and children and offers information about the care of premature infants and childhood immunizations.
The AAP bookstore sells an extensive collection of pamphlets and books that cover the medical and psychosocial care of infants and children. Among the pamphlets is Early Arrival: Information for Parents of Premature Infants.
The Preemie Health Web site of Meriter Healthy Living gives information about survival of prematurely born infants and the adverse effects of preterm birth. TheIntroduction to the NICU section includes a glossary that helps parents become oriented to the environment. It introduces the people, equipment, and language of the NICU. Common problems, diseases, and drugs are discussed.
Topics also include issues related to discharge and the emotional support of parents, including questions parents may ask after their children are discharged from the hospital. Neurodevelopmental outcomes of preemies are also covered. The site has wide-ranging information useful to both parents and professionals.
The Premature Birth Web site of the March of Dimes Foundation is an outstanding site for parents and professionals that discusses preventing prematurity and diseases of pregnancy that cause preterm birth. The site offers information about the diseases infants might have, and it provides information about neonatal nutrition, including the importance of breastfeeding. The site addresses disabilities in prematurely born infants. Resources are available in Spanish.
Shriners Hospitals for Children offer care to infants and children who have qualifying medical conditions, such as spina bifida, cleft lip and/or palate, and orthopedic anomalies. The Shriners Hospitals Web site provides information on the location of Shriners Hospitals and on patient referrals. In addition, clinicians or parents may call a toll-free patient-referral line to determine if a particular child qualifies; the referral numbers are 1-800-237-5055 in the United States and 1-800-361-7256 in Canada.
A Primer on Preemies from the KidsHealth for Parents Web site by the Nemours Foundation is a Web site sponsored by medical experts at the Nemours Foundation. It summarizes the NICU and conditions common to premature infants. Resources are available in Spanish.
Parents of Premature Babies Inc (Preemie-L) offers a good compendium of on-line and off-line resources. Preemie-L is a non-profit foundation supporting families with children
born 6 weeks or more before their due date.
NatalDoc.com is a Web site that provides information in Spanish and English for high-risk pregnancy and for neonatal and pediatric information. It is sponsored by the Pediatrix Medical Group.
Child Care Resources is a Web site with a list of day care requirements needed to establish programs for special-needs children.
Additional Resources
To obtain additional information or help with finding support groups, parents can also ask the neonatologist, the nursing supervisor, and/or the social worker for resources in or near the hospital. Some facilities provide parents with a pamphlet that contains this information when their child is admitted.
Community agencies, such as the March of Dimes, and religious organizations may offer support services. Local and national support groups have been organized for infants and children with certain conditions. Examples include theDown Syndrome Foundation, the Cystic Fibrosis Foundation, and the Little People of America (addressing dwarfism).
