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Advocacy/Network Organizations for Parents of Premature Infants
(for a full list see the Directory-of-Family-Organizations)
- Canadian Premature Babies Foundation: This organization seeks to prevent preterm birth through education and research: supports the best standards of care for premature babies; and gives premature babies and their families a voice across Canada.
- European Foundation for the Care of Newborn Infants: The European Foundation for the Care of Newborn Infants (EFCNI) is a pan-European organization representing parents and scientific experts with the aim of improving the long-term care of preterm and newborn infants with illnesses and support for their families.
- March of Dimes: Prematurity: This nonprofit organization for pregnancy and baby health is dedicated to preventing birth defects, premature birth and infant mortality. The web site has sections tailored to NICU families, along with personal stories from families and a place to share your story with others.
- Preemie Parent Alliance (PPA): The PPA represents US organizations that provide support to parents of preemies. Each of its member organizations are run by parents of preemies and provide resources, support and information for families of premature infants. See the “Meet our Members” page for a listing of many parent organizations across the United States.
- PreemieWorld: PreemieWorld was created to help bridge the gap between parent and professional in the NICU, at home and beyond. With books, videos, and other products and tools, the hope is to make everyone’s life just a little bit easier as the “new normal” is created in the life of the preemie and his/her family.
- ZERO TO THREE: This national nonprofit promotes the health and development of infants and toddlers by informing, training and supporting parents, professionals and policymakers. (Note: Complete the free registration to get full access to the site’s online resources.)
- Early Intervention: Early Intervention (EI) is a US based, nationwide program. Under federal law entitled Individuals with Disabilities Education Act (IDEA) –Part C, each state and territory of the US is required to ensure that appropriate early intervention services are made available to all eligible birth-through-2-year-olds with disabilities and their families. Most children born preterm meeting criteria for EI services and should be evaluated for developmental support. Each state has their own EI program and your local provider can be found at www.ectacenter.org/contact/ptccoord.asp. For a complete description of the program please visit: www2.ed.gov/programs/osepeip/index.html
- Developmental Observer: The official newsletter of the NIDCAP Federation International
- Preemie Families: PreemieWorld newsletter — subscribe for free; Access Preemie Families newsletter archives here
- American Academy of Pediatrics – Section on Perinatal Pediatrics: The AmericanAcademy of Pediatrics has a page dedicated to information for families.
- Baby First: Parent’s Corner: This site provides educational resources and support to parents and caregivers of premature infants, including sections on life with your baby in and after the NICU, plus parent stories, as well as a glossary of NICU terms.
- KidsHealth: A Primer on Preemies: This site on children’s health, behavior and development has a section that describes common health problems of premature infants and life after the NICU.
- MedlinePlus: Premature Babies: A service of the U.S. National Library of Medicine and the National Institutes of Health, this site includes links to articles, web sites and other information—from the basics of preterm labor and the latest research to financial issues and information about different medical conditions.
- En español: Medline Plus: Bebé prematuro
- Premature Baby — Premature Child: This site was started in 1996 by parents whose son was born at 26 weeks. Their goal is to support other parents by providing information, resources and a way for parents to connect. It also offers help for parents of school-age children and discusses long-term impacts of prematurity.
- World Health Organization (WHO): This is a link to the WHO’s fact sheet on preterm birth which includes links to “Born too soon: the global action report on preterm birth“, and other useful information for families of preterm infants.
- Centers for Disease Control and Prevention (CDC): The CDC’s Division of Reproductive Health provides on preterm birth in the US as well as general information on preterm birth from the signs of preterm labor to prevention.
- A Family Guidebook: Supporting Development of Newborns and Infants (2009) by Joy V. Browne, Ayelet Talmi and Annie Immele, Early Intervention Colorado, www.eicolorado.org
- Collaborative Consultation with Parents and Infants in the Perinatal Period (2012) by Zack Boukydis
- Early Arrival: Finding the Magic of Everyday Moments With Your Baby in the Neonatal Intensive Care Unit (2007) by Rebecca Parlakian and Claire Lerner, ZERO TO THREE: National Center for Infants, Toddlers, and Families, www.zerotothree.org. (Note: Begin with free registration on the ZERO TO THREE web site to gain access to this pdf file.)
- Caring for Your Baby in the Neonatal Unit (2014) by Inga Warren & Cherry Bond
- Intensive Parenting: Surviving the Emotional Journey Through the NICU (2013) by Deborah Davis & Mara Tesler Stein
- Kangaroo Babies: A Different Way of Mothering (2006) by Nathalie Charpak
- Newborn Intensive Care: What Every Parent Needs to Know, 3rd Edition (2009) by Jeannette Zaichkin
- Parenting Your Premature Baby and Child: The Emotional Journey (2004) by Deborah L. Davis and Mara Tesler Stein.
- Preemies: The Essential Guide for Parents of Premature Babies (2000) by Dana Wechsler Linden, Emma Trenti Paroli and Mia Wechsler Doron
- The Preemie Parents’ Companion: The Essential Guide to Caring for Your Premature Baby in the Hospital, at Home, and Through the First Years (2000) by Susan L. Madden
- Preemie Parents: Recovering from the Baby’s Premature Birth (2007) by Lisa McDermott-Perez.
- Special Delivery-What to Expect after the Birth of Your Preemie, Karen Gaskell
- The Magic of Everyday Moments: How the Brain, Body and Mind Grows from Birth to 3 (2000) by Claire Lerner with Amy Dombro and Karen Levine, ZERO TO THREE: National Center for Infants, Toddlers, and Families, www.zerotothree.org. (Note: Begin with free registration on the ZERO TO THREE web site to gain access to this series of pdf files in English or Spanish.)
- The Preemie Parents Survival Guide To the NICU (2009) by Nicole Conn & Deb Discenza
- The Preemie Primer: A Complete Guide for Parents of Premature Babies–from Birth through the Toddler Years and Beyond (2010) by Jennifer Gunter
- The Premature Baby Book: A Parent’s Guide to Coping and Caring in the First Years (1983) by Helen Harrison & Ann Kositsky
- The Premature Baby Book: Everything You Need to Know About Your Premature Baby From Birth to Age One (2004) by William Sears, Robert Sears, James Sears and Martha Sears
- Touchpoints: The Essential Reference: Your Child’s Emotional and Behavioral Development (1992) by T. Berry Brazelton.
- Touchpoints-Birth to Three (2006) by T. Berry Brazelton & Joshua D. Sparrow
- Tu bebe prematuro / Your Premature Baby (2009) by Victoria Dana
- What to Do When Your Baby Is Premature: A Parent’s Handbook for Coping with High-Risk Pregnancy and Caring for the Preterm Infant (2000) by Joseph A.Garcia-Prats and Sharon Simmons Hornfischer
- Your Baby Is Speaking To You (2011) by Kevin Nugent
- Your Premature Baby (2012) by Su Laurent & Maya Isaaks
- Your Premature Baby and Child: Helpful Answers and Advice for Parents (1999) by Amy E. Tracy and Dianne I. Maroney
- Your Premature Baby: Everything You Need to Know about Childbirth, Treatment, and Parenting (1998) by Frank P. Manginello and Theresa Foy DiGeronimo
Your Premature Baby: The First Five Years (2003) by Nikki Bradford
Personal books by parents
- A Mother’s Diary: How to Survive the Neonatal Intensive Care Unit (2005) by Menetra D. Hathorn, Trafford Publishing, Canada
- Alex: The Fathering of a Preemie (2004) by Jeff Stimpson, Academy Chicago Publishers, Chicago.
- From Hope to Joy: A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds (2013) by Jennifer Degl
- Jacob’s Journal: A Window into the NICU (2010) by Kristine Repino, Grace Publishing, Farmington Hills, MI.
- Living Miracles: Stories of Hope from Parents of Premature Babies (2000) by Kimberly A. Powell and Kim Wilson, St. Martin’s Press, New York.
- Preemie Chronicles: Our NICU Experience (2006) by Jeff Ewing, Lulu, U.S.A.
- This Lovely Life (2009) by Vicki Forman, Mariner Books, New York.
- Believe in Katie Lynn (1995) by Bartholomew Resta, Eggman Publishing, Nashville.
- Born Early: A Premature Baby’s Story (1998) by Lida Lafferty, Fairview Press, Minneapolis.
- Evan Early (2006) by Rebecca Hougue Wojahn, Woodbine House, Bethesda, MD.
- The Littlest Sister (2008) by Leigh Schilling Edwards, Strategic Books Publishing, New York.
- My Baby Sister Is a Preemie (2005) by Diana M. Amadeo, Zonderkidz, Grand Rapids, MI.
- No Bigger Than My Teddy Bear (2004) by Valerie Pankow, Family Books, Petaluma, CA.
- Waiting for Baby Joe (1990) by Pat Lowery Collins, Albert Whitman & Company, Park Ridge, IL.
Resources within the NFI Website