Deanna holding Mila after 10 weeks in the NICU
Having a baby in the NICU is one of the most traumatic—and transformative—experiences anyone can endure. For parents watching their babies fight for their lives day after day, the stress levels are comparable to those of soldiers in combat. So are the rates of PTSD. Mothers, especially, are often haunted by shame, guilt, fear, and grief in the aftermath of a premature birth.
Yet counseling services aren’t commonly offered to parents in the NICU. People in the outside world often don’t understand or know how to acknowledge these experiences. So many NICU parents suffer in isolation and silence — as I once did.
Here’s the good news: You’re not alone. Ever since I spoke out about my own daughter’s preterm birth and its profound repercussions, I’ve been awed by the support and solidarity offered to me by an array of passionate, devoted advocates for families like mine — many of them with firsthand experience of what it means to have a child struggle at the edge of life. No matter the specifics of your ordeal, plenty of other people have been through it and come out on the other side. They can’t promise a miraculous outcome for your child, but they can help you begin to heal.
When you’re suffering, reaching out can be a terrifying act of faith — but it can also save you. Here are some resources for information, support, and advocacy that I wish I’d known about during my own months in the NICU: online communities, support groups, one-on-one mentoring, great books, and lots more. Please feel free to explore and find the resources that are right for you.
PREEMIES: The Essential Guide for Parents of Premature Babies by Dana Wechsler Linden, Emma Trenti Paroli, and Mia Wechsler Doron: This is a book that truly lives up to its title. Co-written by a neonatologist and two mothers of premature babies, it’s packed with reassuring yet realistic answers for all the questions a preemie parent might not feel comfortable asking in their own NICU. An essential guide to the great universe of unknowns that often confront parents of premature babies.
March of Dimes / Share Your Story: Join a safe, compassionate online community to share your experience with prematurity, birth defects, or loss.
March of Dimes / The NICU: Learn more about topics related to your baby’s NICU stay, such as a father’s role in the NICU, caring for multiples, and common NICU equipment.
Graham’s Foundation: A nonprofit that delivers support, advocacy, and research to improve outcomes for preemies and their families.
Hand to Hold helps families before, during, and after NICU stays and infant loss by providing powerful resources for the whole family, and most importantly, one-on-one mentoring from someone who has been there.
Resources include in-hospital programs, articles and blogs, social networks, and trained peer mentors. All were designed with the emotional, physical, and social needs of the whole NICU family - including siblings and grandparents.
NICU Helping Hands develops hospital- and community-based programs that provide education and support for families with babies in the neonatal intensive care unit (NICU), during their transition from hospital to home and in the event of an infant loss.
Angel Gown Program: Bereavement support for grieving families
One-on-One Mentoring Program: Peer support for NICU families
Family Assistance Program: Financial support for NICU families
NICU Mom Connect: Post-NICU support for mothers
Support 4 NICU Parents: Created by the National Perinatal Association, this website provides resources to help you understand and explore your new role as a NICU parent, with information on topics such as peer support, mental health support, and family-centered developmental care.
Zoe Rose Memorial Foundation offers emotional support, educational resources, and awareness focused events for families with a preterm or critically ill infant in the NICU, or those who have experienced a pregnancy or infant loss.
NICU Healing: An online therapeutic resource for parents, caregivers, and family members coping with the NICU experience. Founder Kara Wahlin, a former NICU parent and licensed MFT, writes about the NICU journey, the mental health issues that can pop up in its wake, and provides clinical services to couples, families, and caregivers in the NICU.
Preemie Parent Alliance is a network of organizations across the country that provide support to families with a baby in the Neonatal Intensive Care Unit. To ensure best outcomes for preemie families, the Preemie Parent Alliance is dedicated to representing the needs and best interests of preemie families in all facets of healthcare policy, care guidelines, advocacy, education and family support.
Far from the Tree, by Andrew Solomon: This isn’t a book about prematurity, but it is a book that made me a better parent and a more compassionate person in the world. It's a tough, transformative exploration of how we respond when parenthood brings us what we least expected, and all the heartbreak, joy, fear, and transcendent love an atypical child can bring. Ultimately, it’s an exploration of how our differences unite us.
Neonatal Bioethics: The Moral Challenges of Medical Innovation, by John D. Lantos and William L. Meadow: This is a brilliant read for any parent who wants to know more about the science, history, politics, and decision-making involved in neonatal care. Clearly and compassionately written, this book tackles the moral and financial dilemmas that surround the issue of how we care for our most vulnerable. It finally helped me understand the moment in history when my daughter arrived—and how she made her way home.
My Preemie app: Created by the coauthors of PREEMIES: The Essential Guide for Parents of Premature Babies, this app can be an invaluable tool to help parents navigate the turbulent day-to-day of the NICU, with a diary, definitions of medical terms, and ways to keep your loved ones updated.
PreemieWorld was created to help bridge the gap between parent and professional in the NICU, at home and beyond. With books, videos, and other products and tools, the hope is to make everyone’s life just a little bit easier as the “new normal” is created in the life of the preemie and his/her family.