Life is full of moments that impact our lives, but they’re often swept under the rug, undiscussed. One of those moments is infant and pregnancy loss. These are some of the most devastating and frustrating losses someone can go through. Despite their impact, people are often left unsupported or unsure of how to access the resources they need.
Jump ahead to these sections:
- Major Infant Loss Organizations in the United States
- Major Pregnancy Loss Organizations in the United States
As isolating as infant and pregnancy loss can be, there are support systems that can help you feel a little less alone in your experience. They can give you the information you need.
There are several infant and pregnancy loss organizations that you can reach out to, whether you want to hear an inspirational story, connect with a community, or learn what your options are. We’re here to introduce you to some of the top organizations in the country.
Major Infant Loss Organizations in the United States
Our hearts are with you as you and your loved ones endure the devastating loss of an infant. If you or someone you love has experienced such a loss, it can be so hard to know how to ask for help. Major infant loss organizations are there to be your support system when you don’t know where else to turn to. Many of these organizations were founded by people who have experienced significant losses, and they use their experiences to help others.
Here are the top infant loss organizations in the United States:
1. The International Stillbirth Alliance
Established in 2003, the ISA is dedicated to connecting people around the world to prevent stillbirth and newborn death, and it also supports affected families. The organization promotes global collaboration to increase research that aids in building preventative measures. Additionally, the ISA bases its work around global impact, collaboration, saving lives, and data.
They divide their organization into three working groups: bereavement, advocacy, and prevention. You can get involved with the ISA through conferences, events, and volunteer opportunities. They also offer a wide range of resources like bereavement support, and information on prevention and advocacy.
2. Share: Pregnancy and Infant Loss Support
Share is a community that supports anyone who experienced the loss of an infant including parents, grandparents, siblings, friends, and professionals. Based in St. Charles, Missouri, this national organization has over 75 chapters in 29 states. They offer numerous services for people grieving the loss of an infant including phone support, face-to-face group meetings, bedside companions, memorial events, training for caregivers, and much more.
Share was founded in 1977 by Sister Jane Marie Lamb thanks to the urging from a bereaved family in Springfield, Illinois. This organization is unique in the training that they offer caregivers who support bereaved families. You can find more information about their trainings on their website. There are many ways to support the organization through volunteering and donations.
3. Star Legacy Foundation
Star Legacy Foundation is a non-profit organization dedicated to reducing pregnancy loss and neonatal death. It’s also committed to improving care for families who face these tragedies. Their organization is made up of researchers, policymakers, health professionals, families, and other individuals dedicated to this cause.
They believe utilizing education, technology, and grassroots efforts can empower health professionals and families to identify and protect vulnerable babies. Their over 20 chapters across the United States work together to host a nationwide grief support line, push for data collection and collaboration among hospitals, advocate for insurance-covered tests after a stillbirth, and much more.
They also help provide family support materials and companion services to bereaved families. Additionally, they provide online video support groups for bereaved parents and other people affected by the loss of an infant.
You can support this organization by volunteering, connecting with a local chapter, creating a Facebook fundraiser, and sharing your story. Health professionals can get plenty of information on best supporting the bereaved families in their care.
4. First Candle
A Connecticut-based organization, First Candle is committed to ending Sudden Infant Death Syndrome (SIDS) and other sleep-related infant deaths. In addition, they also provide bereavement support to families who have experienced infant death.
For more than 35 years, First Candle has spread information and support on the best ways to prevent SIDS and infant loss. They are dedicated to the values of accountability to the public, respect for diversity, inclusiveness and social justice, respect for the worth and dignity of individuals, responsibility for stewardship of resources, and more.
In 1994, the organization partnered with the National Institutes of Health to create the “Back to Sleep” campaign, which led to a more than 50% reduction of the rates of SIDS. Overall, their objective is to save babies and support families. You can find information on bereavement support and counsel on their website.
Major Pregnancy Loss Organizations in the United States
Coping with a miscarriage can be a heartwrenching and frustrating process. Many people are left feeling guilty, depressed, and anxious without knowing how to deal with and heal from these feelings. Pregnancy loss organizations are dedicated to spreading awareness, education, and resources on navigating miscarriage, stillbirth, abortion, and other kinds of pregnancy losses.
Here are some to turn to if you’re in need of some extra support:
5. March of Dimes
March of Dimes is an incredibly well-known pregnancy loss organization, and for a good reason. This organization has led the fight for the health of pregnant people and their babies for over 80 years. Much of their work focuses on advocating for policies that prioritize the health of pregnant people and their babies. In addition, they are committed to pioneering research in the field.
Their overall goals are to end preventable maternal health risks and death, end preventable preterm birth and infant death, and end the health equity gap for all families. They serve the world of reproductive health by providing support to families in the NICU, supporting research, and educating medical professionals and the public on best practices based on this research.
You can find numerous tools and resources on their website with information on pregnancy, babies, loss and complications, and more. If you want to get involved with the organization, you can volunteer, advocate, donate, or create your own fundraising event.
6. Miscarriage Hurts
Miscarriage Hurts is an online healing refuge for those who have experienced miscarriage or pregnancy loss. Based in San Diego, California, they are dedicated to providing support for the parents and any other family or loved ones who have been affected. Their goal is to offer a safe space where people can share their stories, better understand their personal experiences, and connect with resources that can support their specific needs.
They base their support on their “healing pathways” philosophy. These “pathways” help tell your story, build support, understand unhealthy behaviors, explore emotions, identify losses, and promote healing.
Since each person processes their emotions differently, these pathways are a starting point for reflection and healing, so you get the individualized care you need. When you click through these pages on their website, you’ll find interactive online worksheets and activities to help you better understand each pathway and how you relate to it.
You can also find ways to commemorate your loss with memorial items and resources, an online memorial wall, and the remembrance page. Here you can read through other people’s stories and click through the memorial wall to help you know that you’re not alone.
7. American Pregnancy Association
The American Pregnancy Association has a portion of its organization dedicated to spreading information, providing resources, and offering support for anyone navigating pregnancy loss. While they provide information across the whole spectrum of pregnancy, much of their work is focused on pregnancy loss.
Their toll-free education and support phone aim to assist people facing pregnancy loss. They also provide education on services for infertility, pregnancy health, pregnancy complications, chemical pregnancies, and much more. This is an excellent resource for finding easy-to-digest information on health and pregnancy loss topics.
8. Return to Zero: Hope
RTZ Hope aims to provide compassionate support for people who have faced pregnancy loss, infant loss, and other complications on their journey to parenthood. They offer valuable resources and inclusive support for anyone who has been touched by miscarriage, stillbirth, termination for medical reasons, infant or toddler death, and failed adoption and loss through surrogacy.
This organization is unique in its understanding of all the ways people can be touched by pregnancy and infant loss, and they provide support through it all.
This non-profit organization was founded by Kiley Hanish after the stillbirth of her first son. She and her husband Sean created the film Return to Zero to bring others healing and shatter the stigma and silence associated with pregnancy loss. This became a movement and organization offering many levels of support to anyone who has been affected by pregnancy loss.
Bereaved parents can find inclusive information on navigating trauma, what to do at the hospital, ectopic pregnancy, ending a wanted pregnancy, and more. They offer healing retreats, support groups, and a comprehensive directory to connect with other organizations and support groups.
Finding Support From Infant and Pregnancy Loss Organizations
Navigating pregnancy and infant loss is not an easy journey. Whether you’re looking for support for yourself or a loved one, getting in touch with these organizations is a great first step on your path to healing. They can help you access the education and resources you need, ensuring that help is available.
Pregnancy and infant loss are unfortunate parts of life, and they aren’t experiences you should navigate alone. You deserve all the support you can get. That can be in the form of self-care practices, joining a miscarriage support group, finding a counselor or mental health professional, or sharing stories with other people who have been through something similar. You can and will get through this.