Dr. Clint White, Forrest General Hospital, Hattiesburg, Mississippi

Dr. Clint White
Forrest General Hospital, Hattiesburg, Mississippi

Resources

Resources for Families of Premature Infants

Websites

  • 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.
  • 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.
    American Academy of Pediatrics – Section on Perinatal Pediatrics: The AmericanAcademy of Pediatrics has a page dedicated to information for families.
  • Early Intervention Colorado:  This program provides early intervention supports and services to infants, toddlers and their families within their communities. Although the program is specific to Colorado, the web site also offers many resources in English and Spanish for parents and caregivers of children born prematurely.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.)
  • 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.
  • 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.
  • 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 Repreoductive Health provides on preterm birth in the US as well as general information on preterm birth from the signs of preterm labor to prevention.

 

Online Chat Sites

  • Parents of Premature Babies Inc. (Preemie-L):  This parent-initiated nonprofit offers support to families and caregivers of premature babies primarily through an online forum where people can share their stories and concerns.
  • Preemie-child:  This is an online support group for parents of school-age children (4 years or older) who were born prematurely.

 

Guidebooks

  • 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.)
  • A Family Guidebook: Supporting Development of Newborns and Infants (2009) by Joy V. Brown, Ayelet Talmi and Annie Immele, Early Intervention Colorado, www.eicolorado.org.
  • Getting To Know Your Baby (2003) by Kathleen A. VandenBerg, Joy V. Browne, Linda Perez and Amanda Newstetter, Special Start Training Program, http://specialstart.ucsf.edu/sstp/.
  • 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.)
  • Supporting Your Infant After the Neonatal Intensive Care Nursery Experience (2008) by Kathleen A. VandenBerg, Linda Perez and Amanda Newstetter, Special Start Training Program, http://specialstart.ucsf.edu/sstp/.
  • Newborn Intensive Care: What Every Parent Needs to Know, 3rd Edition (2009) by Jeannette Zaichkin, AmericanAcademy of Pediatrics, Elk Grove Village, IL.
  • Parenting Your Premature Baby and Child: The Emotional Journey (2004) by Deborah L. Davis and Mara Tesler Stein, Fulcrum Publishing, Golden, CO.
  • Preemies: The Essential Guide for Parents of Premature Babies (2000) by Dana Wechsler Linden, Emma Trenti Paroli and Mia Wechsler Doron, Pocket Books, New York.
  • 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, The Harvard Common Press, Boston.
  • Preemie Parents: Recovering from the Baby’s Premature Birth (2007) by Lisa McDermott-Perez, Praeger Publishers, Westport, CT.
  • 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, Little, Brown and Company, New York.
  • Touchpoints: The Essential Reference: Your Child’s Emotional and Behavioral Development (1992) by T. Berry Brazelton, Perseus Books, Reading, MA.
  • 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, Three Rivers Press, New York.
  • Your Premature Baby and Child: Helpful Answers and Advice for Parents (1999) by Amy E. Tracy and Dianne I. Maroney, The Berkeley Publishing Group, New York.
  • Your Premature Baby: Everything You Need to Know about Childbirth, Treatment, and Parenting (1998) by Frank P. Manginello and Theresa Foy DiGeronimo, John Wiley & Sons, New York.
  • Your Premature Baby: The First Five Years (2003) by Nikki Bradford, Firefly Books, Buffalo, NY.

 

Personal books by parents

  • Alex: The Fathering of a Preemie (2004) by Jeff Stimpson, Academy Chicago Publishers, Chicago.
  • 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.
  • A Mother’s Diary: How to Survive the Neonatal Intensive Care Unit (2005) by Menetra D. Hathorn, Trafford Publishing, Canada.
  • Preemie Chronicles: Our NICU Experience (2006) by Jeff Ewing, Lulu, U.S.A.
  • This Lovely Life (2009) by Vicki Forman, Mariner Books, New York.

 

Children’s books

  • 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.

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