A variety of resources for both parents and professionals with the goal of providing psychosocial support to NICU parents are available on the website Support 4 NICU Parents, developed by the National Perinatal Association. Resources are available for peer support and starting a parent support group, getting parents more involved in developmental care of their baby while in the NICU, understanding the role of mental health professionals such as social workers and psychologists in the NICU, palliative care and bereavement, post-discharge follow-up and support, and staff education and staff support.
Please support the March of Dimes in its mission to improve the health of mothers and babies, and especially to prevent prematurity. Established by President Franklin Roosevelt in 1938 with a mission to defeat polio, the March of Dimes does more than any other volunteer organization in the U.S. to advocate for healthy pregnancies and healthy babies.
The Ronald McDonald House is a home-away-from home for parents coping with the hospitalization of their sick child. From its inception in 1974 in Philadelphia, the Ronald McDonald House Charities has established 300 houses in cities around the country. This invaluable resource provides a place for parents to stay close to the hospital, and a supportive group environment for families at little or no cost to them.
For more extensive information about the causes and consequences of preterm birth, as well as how to prevent it, read the Institute of Medicine's report on this topic.
Internet resources for parents of children with Down Syndrome include: National Association for Down Syndrome, and Down Syndrome.com, a social networking site for parents of Down Syndrome children.
For information about Trisomy 18, visit SupportOrganization for Trisomy 18, 13 and Related Disorders (SOFT) and Trisomy 18 Foundation.
Information about postpartum depression can be found through the following websites: Postpartum Education for Parents and Postpartum Support International.
Now I Lay Me Down to Sleep is an organization of 3,000+ photographers worldwide who create sensitive images for families who have lost babies to critical illness or stillbirth.
Raising Multiples, a community of families, volunteers and professionals founded in 1987, is the leading national nonprofit provider of support, education and research on higher-order multiple births. Raising Multiples' (Mothers of Supertwins, or MOST) mission is to advocate for quality prenatal care, promote healthy deliveries, and supply information to all multiple birth families in order to support successful parenting through every phase of their children's development. Supporting Multiple Birth Families...Every Step of the Way.
Preemieworld is a site promoting advocacy for preemie parents, established by the authors of The Preemie Parent's Survival Guide to the NICU.Graham's Foundation empowers parents of premature babies through support, advocacy and research to improve outcomes for their preemies and themselves. In addition to their NICU, transition home, and remembrance care package programs, they have more than 20 trained parent mentors available 24/7 via email, phone, and text and the market-leading app for preemie parents, MyPreemie. They also recognize the courage and commitment parents of preemies demonstrate as they care for and advocate for their babies and children through efforts such as Parents of Preemies Day. Their aim is to draw worldwide attention to the real, long term costs of prematurity while giving parents the support they need to be there for their babies.The goal of the Zoe Rose Memorial Foundation is to empower parents and inspire hope. They offer help, education and support to parents of micro-preemies.PeekabooICU offers a look into the world of the Neonatal ICU. Its goal is to empower preemie parents with lots of educational information.
Project Sweet Peas helps families who have a child in the intensive care unit by providing care packages that offer comfort while building cherished memories.The mission of Hand to Hold is to provide comprehensive navigation resources and support programs to parents of preemies, babies born with special healthcare needs and those who have experienced a loss due to these or other complications.Mikayla's Grace offers NICU Care Packages and Angel Memory Boxes to those in need.The Inspire website has a robust Preemie Support Community for anyone who wants to engage in online discussion about their baby.Snoedel is Dutch for "snuggle." Snoedels are cloth "dolls" that absorb and retain a mother or father's scent, and can be placed in baby's bed in the NICU or at home to comfort the baby and help baby sleep. Must have for preemies!!! Skyler's Gift Foundation has a mission to support families who have lost an infant to prematurity and to provide funding to help further research and awareness on this issue. Papas of Preemies is a blog for--you guessed it!--Dads, but Moms are welcome, too. A unique perspective is presented, with many guest bloggers contributing. The National Perinatal Association promotes the health and well being of mothers and infants, enriching families, communities and our world. Especially check out the Family Advocacy Network (FAN), which is a comprehensive listing of Parent Support Groups nationwide.
The Preemie Parent Alliance is a joining together of many NICU Parent Support Organizations, to become the voice for NICU parents across the U.S.
Minnesota Preemies is a support organization for families with preemies in Minnesota.
A great resource for families that have a child with an Autism Spectrum Disorder is this page on 101 Noteworthy Sites on Asperger's and the Autism Spectrum.
If you think you or your partner may be experiencing postpartum depression, please visit PostpartumDepression.org. The site was started by a couple who dealt with this problem; they connect you with great resources.
Clarke Hill Foundation is a not-for-profit organization founded in 2016 to support and advocate for families of NICU babies and those experiencing infant loss. The organization was started as a way to give back to our community, honor our baby gone too soon, raise awareness to pregnancy and infant loss and help other families. We partner with local resources and organizations to pull together a "one stop community" for parents and allies.
If you would like your non-profit organization that supports NICU or preemie babies or parents to be mentioned on this page, please email drhall@suehallmd.com. If you want your organization's logo to appear here, please send a jpeg. I do not accept commercial, for-profit organizations or organizations that provide resources for older children or adults...only babies.
|
