Only the parents of a premature baby can understand the emotional toll it takes to care for such a fragile child. That’s why finding a community of parents and caretakers who have been through similar circumstances is so important. Fortunately, there are many online resources for parents experiencing the challenge of navigating the NICU and raising a premature baby, from
preemie support groups to virtual counseling sessions to even social media accounts.
While each is different, the focus is the same: to provide a space where preemie parents can bring their worries, wins, and concerns to each other and get help and feedback from those going through the same situations.
380,000 babies are born before 37 weeks gestation each year in the U.S. per March of Dimes — that's 1 out of every 10 American babies. That's a lot of babies receiving extensive medical intervention including respiratory support, invasive treatments, and extended Neonatal Intensive Care Unit stays. In many cases, these spaces are like lifelines for parents who are afraid of not only the unknown, but the known as well.
Rather than shoulder that burden alone, preemie support groups offer all kinds of resources from chat rooms to virtual mentors, podcasts to classes. It’s the kind of care one won’t often find in a clinic or hospital — ongoing assistance a preemie parent can turn to whether a child is 3 weeks or 3 years old.
A space for NICU transition support
Graham’s Foundation, a not-for-profit support group based in Ohio, was founded with a mission that no one should experience prematurity alone. To that end, the organization has a number of programs designed to help pre-term birth families including NICU transition to home care packages, preemie parent mentors who can be contacted 24/7, an app called MyPreemie, and many online forums for parents to engage with other preemie families. San Francisco Chronicle/Hearst Newspapers via Getty Images/Hearst Newspapers/Getty Images Hand to Hold is an organization created to guide preemie families through the long journey from a NICU stay to home, as well as provide comfort and support in times of loss. To do so, the website maintains forums for its 63,000 online community members. But it’s not just for preemie families. There are also resources for NICU professionals including podcasts and an ambassador program of bedside support volunteers who visit NICUs and provide additional help.
A place for bereavement support
Bereavement support is something all too many families of premature babies need. And
High Risk Hope is one place they can find it. The 501(c)3 believes that “there is no foot too small that it cannot leave an imprint on this world.” To do so, the Florida-based organization connects families with other organizations to provide ongoing grief support and counseling. Hannah McKay - PA Images/PA Images/Getty Images Support 4 NICU Parents was formed by the National Perinatal Association with the goal of improving the level of psychosocial support provided to families of preemies. It not only has resources to guide parents to support groups, it also has a direct contact for parents to reach out with medical and emotional questions for additional one-on-one care. Tiny Miracles is a nonprofit charity based in Fairfield County, Connecticut, that is dedicated to helping families with premature babies. Like many premature baby groups, it offers all kinds of resources for families, but its most popular offerings are free weekly Zoom support chats that anyone can join. Held every Thursday at 8 p.m. EST, they’re a way for people to get to know other parents beyond a virtual chat room or forum. Copyright Morten Falch Sortland/Moment/Getty Images
Care packages, hospital events, peer-to-peer support, financial aid, educational materials, these are all the work of
Project Sweet Peas. Families can reach out directly for all of the above and receive the care they need from this nonprofit. And for those who have simply been touched by a premature birth and want to give back, they can donate to Project Sweet Peas' effort which has sent 23,126 NICU care packages to families and 4,909 bereavement boxes as well.
Social media sites, like Facebook, are a natural home for support groups and the
Parents of Preemies/Premature Babies is one of the biggest for this specific demographic. With 15.3K members, it's a private group you must ask to join. It was started in 2007 when founder Heather Armstrong writes that she couldn't find a similar support space. It invites members to discuss topics related to the raising of premature children but doesn't allow fundraising, self-promotion, or requests for medical advice. It includes parents of preemies from around the world.
Helping hand from March of Dimes
Not every hospital has a March of Dimes
NICU Family Support program, but it's worth inquiring should a family find itself with a baby in the newborn intensive care unit. The nonprofit that's committed to improving the health of mothers and babies organized its NICU Family Support program to provide families with essential materials during their child's NICU stay. Those include things like "keepsake booklets for their NICU baby, a guide for parenting in the NICU, and a NICU guide" according to the organization's website. For families with an infant having a shorter NICU stay, March of Dimes provides materials as well. There's also a helpful app where families can explore their questions and concerns.
Support for babies less than 2 pounds
Premature babies are not a monolith. There are varying levels of prematurity and some of the most at-risk children are those born less than 2 pounds and before 27 weeks. That's why the
Micro Preemie Parents Facebook support page exists, to be there for parents of these special children. Only parents of so called "micro preemies" will be accepted to the private page. Once in, they can expect to be able to join conversations specific to this very unique experience with other parents and guardians who understand where they're coming from.
A Space for Black Preemie Parents
FLORENT VERGNES/AFP/Getty Images Black Preemie Parents Community is a Facebook group just for Black parents to find "support, advice, share stories, or just vent as you go through your journey." It's a small group with less than 400 members providing those who join with an intimate circle of friends to reach out to during challenging times.
Where to go when they grow
The premature parenting journey doesn't end when a child leaves the NICU. It's a lifelong path and one that might find parents looking for support well into their child's teens and twenties. For that there's
Parents of Older Preemies. Another Facebook group, this 1.5K member page is for "parents to share their stories of their preemie(s) and how far they have come in their lives in a caring and supportive environment. This group shares triumphs, setbacks, frustrations and positive advice to others that are on their continued "preemie journey."
Preemie baby support isn't limited to Facebook and nonprofit organizations. Instagram has also become a network where people kind find kinship in navigating life with a preemie. For instance,
preemiesupermoms is an Instagram page dedicated to prematurity awareness. The page posts images of premature babies along with inspiring quotes and stories
For families looking for someone to listen or a place to gather strength, these organizations are here to help. All families need to do is ask.