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Preemie Parent Alliance Resources

We are pleased to list the following organizations and websites as a public service.

They are not endorsed by JF&CS or the Fragile Beginnings Preemie Parent Alliance and this is not an exhaustive list. If you would like to add or edit any information, please contact us.

Preemie Parents Support

National

  • About.com Preemies - Provides videos, reviews of preemie websites including clothing, articles on NICU care and bringing the baby home. Check out the article, “Premature Babies Week by Week” to explore what babies born at certain gestational ages look like.
  • Baby First - Provides parents of preemies and providers with information on a variety of topics. For parents, this includes general information on preterm birth, helpful information for the NICU stay, glossary of terms, information for after NICU discharge, family stories, and resources. For providers, this includes specific issues such as thermoregulation and jaundice management.
  • Graham’s Foundation - Provides care packages to families in NICU as well as blogs and an extensive resource guide.
  • Inspire: Online Preemie Support Group - Provides an opportunity to share your questions and stories with other parents that have gone through similar situations with their own preemies; this includes support for families who have experienced loss, families whose infants are still in the NICU, and parents of older children who were born prematurely.
  • March of Dimes: Share Your Story - Provides an online community of parents whose infants have spent time in the NICU that allows you to share your story, as well as to gather strength, information and support from other parents.
  • Mothering: NICU & Preemie Parenting - Provides community discussions, blogs, and opportunity to ask questions.
  • Preemie Babies 101 - Provides information on preemie care before and after the NICU, a glossary of terms, a monthly newsletter and a slideshow of pictures.  
  • Preemie Care - Provides general information about premature infants and health risks. This is a division of MOST (Mothers of Supertwins).
  • Preemie Voices - Provides an advocacy toolkit and up to date information on current issues.
  • Premature Baby, Premature Child - Provides information on long term impacts of prematurity, information on delivery and an opportunity to share your child’s story and accomplishments.
  • Prematurity Networks - Provides patient education materials for preemie parents on a variety of relevant topics and links families to the regional prematurity network in their area. The site is sponsored by MedImmune Advocacy.
  • Spenser’s Hope - Provides information on common diagnoses and the experience of the NICU.  
  • Tiny Miracles Foundation - Provides resource information including a glossary of NICU terms. The organization is based out of Connecticut.
  • The Zoe Rose Memorial Foundation - Provides services and information to educate, support, connect, comfort, and empower the families of micro preemies.  

Massachusetts

General Parenting Support

National

  • Attachment Parenting International - Provides education and support of parents in ensuring that an infant develops a secure attachment to his or her caregivers in order to support the infant’s emotional and social development.
  • Café Mom - Provides an online community and information for mothers.
  • Child and Family Webguide - A searchable directory that evaluates and provides links to hundreds of websites that are based on research in child development and provide practical advice to parents. Parents can search for current information on particular diagnoses.  
  • Dr. Sears - Provides information on various aspects of child development and medical issues. A search under “preemies” reveals information on various issues regarding premature labor and premature infants, excellent care advice for mother’s in high risk pregnancies as well.
  • Healthy Children - Provides articles on parenting and topics that are important to parents and information on raising healthy children through prenatal to 21 years. Website is associated with the American Academy of Pediatrics. A search under “preemies” reveals many articles specifically directed at parents of preemies.
  • Moms Rising - An organization that advocates and raises awareness on parenting issues.
  • Zero to Three - Provides information on behavior, your child’s development, finding childcare and your child’s education.

Massachusetts

  • Birth to Three Family Center - Provides education to parents, play groups, and parent workshops. This organization is located in Ipswich.
  • Boston Mamas - Provides a local blog with information about family activities in Boston and the opportunity to meet up with other parents in the area. 
  • Centros Las Americas - Provides parenting skills and parent support group for Latino families in the greater Worcester community.
  • Child Care Resource and Referral Agencies - Provides community specific information on local day care, family care and preschools area as well as a source of information for groups that prepare families for school.
  • Children’s Friend - Provides grief counseling, family counseling and other programs for families in central Massachusetts. 
  • Children’s Trust Fund - Provides information on statewide Healthy Families program for teen parents, parent education, family training centers and family centers that provide support to families around Massachusetts. 
  • The Family Center - Provides immigrant families and families in crisis with family therapy, parenting training and parenting support groups, serves family in the Greater Boston Area.
  • Families United Network - Provides parent support groups, free activities for families, parent classes and information on resources in the Cape Cod area. 
  • Federation for Children with Special Needs - Provides free workshops and information for parents of children with disabilities or special health care needs.
  • Head Start and Early Head Start - Provides a listing of the statewide programs of Head Start, a program for preschool age children to help prepare them for school, and Early Head Start, a program for children birth through three that nurtures early literacy and early language skills.
  • Jewish Family & Children’s Service Center for Early Relationship Support - Provides services to new families through Visiting Moms, free weekly support groups, Healthy Families, parent consultations for sleep, behavior and other parenting questions, therapeutic resources for postpartum depression, and other programs.
  • Massachusetts Healthy Families - Provides a home visiting program that serves first-time parents under 21 years of age. See website for contact person and location of local program.
  • One Tough Job - Provides current practical advice on topics for parents of children of all ages; also available in Spanish. This was created by the Massachusetts Children’s Trust Fund.
  • Parents Helping Parents - Provides support groups, parent stress line, and a list of resources for various parenting issues.
  • Pernet Family Health Services - Provides a variety of services including parent skills training to parents under 23 years of age and home care assistance for mothers who have young children or are pregnant, located in Worcester.
  • Southeast Asian Coalition of Central Massachusetts - Provides assistance to Southeast Asians in the areas of educational and job training, economic, as well as emotional, social and cultural support, including a parenting support group.
  • Talk, Read, Play - Provides activity ideas that support child development, including activity and milestones guides in eight languages.
  • YOU, Inc - Provides parent to parent support in central Massachusetts.

Early Intervention

National

  • First Signs - Information for parents and providers about red flags to look for with autism spectrum disorders and the role Early Intervention plays in all developmental delays.

Massachusetts

  • Early Intervention Parent Leadership Project - Provides information about family rights, individual family service plans, descriptions of relevant laws, and so much more information as a user friendly website. A link to a newsletter with updated information in EI is also offered on this website. Some information is also provided in Spanish. 
  • Massachusetts Department of Public Health: Early Intervention - Provides information about eligibility, family rights, family involvement, individualized family service plans, payment, and information on programs and quality assurance.
  • Massachusetts Family Ties - Provides general information on eligibility for services, a description of Early Intervention, and listing of Early Intervention providers by city.
  • Early Intervention Training Center - Provides free workshops, information, and training for Early Intervention specialists, professionals, and families that leads to certification. Also provides information on other workshops around Massachusetts.

Special Health Care Needs

National

  • Aaron’s Tracheostomy Page - Provides parents of children who have a tracheostomy with information about home care techniques, advocating for your child and finding a large nationwide support group for families of children who have tracheostomies.
  • Ability Path - Provides support for parents of children with special health needs including information on diagnoses, developmental milestones and information to maximize your child’s development. 
  • Allergy and Asthma Network & Mothers of Asthmatics - Provides information to families of children with severe allergies and asthma, including advocacy in the schools, changes to the home, FAQ, medications and the newest in research and technology.
  • American Academy of Pediatrics - Provides information on medical conditions, specialists, treatments and the latest research. 
  • Association for Retinopathy of Prematurity and Related Diseases - Provides information about ROP, with book lists (for children and adults) and one Mom’s story.
  • Cerebral Palsy Guide - Provides free educational information, financial options, and emotional support for parents and children affected by cerebral palsy.
  • Cerebral Palsy Group - Provides free educational information and support to those who have been affected by cerebral palsy.
  • Kids Health for Parents - Provides information about checkups, medications, safety checklists and parenting support for all topics – behavior, emotion, learning and health conditions.  By searching for premature or “preemie” on the site a wide variety of topics are covered including common medical diagnoses. 
  • Neonatology on the Web - Provides a resource guide to medical diagnosis information on various websites using the clinical directory as well as information on the technology and equipment used in the NICU.

Massachusetts

Financial Assistance and Benefits

National

  • United Healthcare Children’s Foundation - Provides award grants to families who have a child under 16 years of age that need a medical service or medical equipment that is not covered under their health insurance.

Massachusetts

  • Catastrophic Illness in Childhood Relief Fund - Provides a reimbursement program for families that have incurred excessive medical bills and have needs beyond the financial support of state and private funding resources.
  • Mass.gov Support Services - Provides information on Massachusetts resources for financial assistance; such as cash for food and nutrition, housing and shelter, transportation, etc.
  • MA DPH: Women, Infants and Children (WIC) - Provides information for financial assistance for mothers to buy healthy foods and baby formula, as well as breastfeeding support.
  • MassHealth Over-the-Counter Drug List - Provides a list of the over-the-counter drugs that are covered by MassHealth without prior authorization.
  • Mass Legal Help - Provides information on the financial assistance programs for low income parents.

Emotional Health (postpartum therapists, etc.)

National

  • Postpartum Support International - Provides help, support and information to women suffering from perinatal mood and anxiety disorders, including postpartum depression, as well as education for family, friends and healthcare providers.

Massachusetts

Preemie Clothing

National

  • Itty Bitty Baby Boutique - Sells preemie-sized clothing accessories (micro-preemie and preemie) as well as clothing that has been adapted for wear while in the NICU.
  • The Preemie Store - Sells clothing in sizes from 1 lb – 9 lbs, prices include FREE SHIPPING!
  • My Miracle Baby - Sells clothing for sizes 3-6 lbs and includes clothing for full-term newborns and toddlers.
  • Nurture Place - Sells NICU+Safe clothing in 1-10 lbs, as well as newborn clothing 1-11 months. 
  • Perfectly Preemie - Sells clothing in sizes 1 lb-9 lbs including clothing designed specifically for use in the NICU to provide easy on/off and access to various lines. Also sells caps, booties, diapers, blankets, bottles, pacifiers and car seats specifically designed for preemies. 
  • Preemie Yums - Sells custom cut clothing from preemies from 0 – 11 pounds, seasonal fashions, and several other companies clothing for micro preemies through nine month olds.
  • Tummy Tunnels - Sells a device that allows g-tubes and other medical tubing to pass in and out of any clothing.

Mothers of Multiples

National

  • About.com on Multiples - Provides the opportunity for you to ask questions, share your story, and learn about twin, triplet, and higher order multiples. 
  • Just Multiples - Sells items for twins and triplets including, books, strollers, clothing, birth announcements, and jewelry.
  • Mothers of SuperTwins - Provides support, education, and research on higher order multiple births, including online support forums for parents of multiples.
  • National Organization of Mothers of Twins Club - Provides support and information for parents of twins and higher order multiples, including member clubs across the nation.

Massachusetts

  • Keeping Pace with Multiple Miracles - Provides boot camp for expectant parents; support groups for families expecting and raising multiples; a second hand consignment shop for clothing, toys, and equipment; and babysitting and nannying services. This organization is located in West Bridgewater.
  • Massachusetts Mothers of Twins Association - Provides a list of all the local mothers of twins groups and supports such as monthly newsletters, playgroups, Moms nights out, bed rest buddies, as well as access to a preemie closet, yard sale, and lending library for gently used items for multiples.
  • Nashoba Valley Moms of Multiples - Provides support for mothers and fathers of multiples including guys night out, girls night in, play groups, meetings, and family events.
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