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For Parents of Preemies & Ill Newborns
- For Parents of Preemies - Excellent introduction to the medical, physical, and emotional challenges facing premature babies during and after their stay in the NICU. Produced by the University of Wisconsin and the Center for Perinatal Care at Meriter Hospital, Madison, Wisc.
- Preemie - L - A complete and informative website for parents of children born six weeks or more early. Provides links to several e-mail discussion groups, fact sheets on various potential health problems of premature infants, and answers to frequently asked questions.
- Comeunity: Premature baby - Premature child - This web site provides a collection of articles, resources and information from doctors researchers and parents on subjects related to prematurity, the special needs of children, and coping with prematurity. On-lines forum and e-mail support lists. An excellent beginning place for parents of preemies and their families and friends.
- PreemieParents.com - Web site reading room for parents of preemies, with special attention to questions that arise after leaving the NICU. From the authors of the highly regarded book, Your Premature Baby and Child: Helpful Answers and Advice for Parents, by Amy Tracy, et.al. (Berkley, 1999).
- American Association of Premature Infants (A.A.P.I.) - Non-profit, advocacy organization dedicated to improving the quality of health, developmental, and educational services for premature infants, children, and their families. Information links and excellent glossary of commonly used terms in NICU.
- Pumping Moms - Many mothers of preemies and infants in the NICU will be introduced to the joys and tribulations of the breast pump. This site is dedicated to these Moms, with excellent FAQ's and information on breast-feeding the hospitalized baby.
- Emory Pediatrics - Source of articles from Emory University Medical Center, particularly focusing on developmental care.
- Cerebral Palsy Multimedia Tutorial - Web site maintained by the Children's Medical Center of the University of Virginia. Gives a thorough introduction to the illness, its treatment and its impact on children.
- United Cerebral Palsy Association - Charitable organization providing extensive information on cerebral palsy and other disabilities.
1-800-872-5827
- ROP Support Group - Web site and e-mail discussion group on Retinopathy of Prematurity.
- March of Dimes Birth Defects Foundation - Charitable organization provides extensive information, fact sheets and support services related to all genetic disorders
1-888-MODIMES
- Genetic Alliance - Organization dedicated to providing information and support related to all genetic disorders. Internet site has a searchable data base of support organizations relevant to any disorder that can affect a child.
1-800-336-GENE
- American Heart Association - Website provides information on congenital heart diseases and treatments. Excellent diagrams of specific heart conditions and defects.
1-800-AHA-USA
- Congenital heart Anomalies - Support, Education and Resources, Inc
1-419-825-5575
- Cleft Palate Foundation - 1-800-242-5338
- National Down Syndrome Society - Information and support for individuals with Down Syndrome, their parents and families. Comprehensive information on all aspects of the condition, related research, legislation and fact sheet.
1-800-221-4602
- Spina Bifida Association of America - 1-800-944-3285
- Support Organization for Trisomy 18, 13, and Related Disorders - 1-800-716-SOFT
- Stages of Fetal development, by week - Tour of fetal development by week and month.
- Achoo - Health Care news gateway site with encyclopedic categories of information and links related to medicine.
- Family Centered Care - Article "The Principles for Family Centered Neonatal Care" written by nurse and preemie parent Helen Harrison.
Professional Societies and Associations:
Consumer Sites:
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