Medical Condition: Help Navigating Resources
Medical conditions are conditions that have potential medical interventions such as surgery, therapies, NICU stays, or other medical treatments that can potentially improve the condition. They may or may not be lifelong medical complexities.
Featured Support Organizations
Our mission is clear: encourage and equip medical practitioners to provide an evidence-based rationale for defending the lives of both the pregnant mother and her unborn child.
The Mission of The National Catholic Bioethics Center is to provide education, guidance, and resources to the Church and society to uphold the dignity of the human person in health care and biomedical research, thereby sharing in the ministry of Jesus Christ and his Church.
Our mission is to inspire and equip parents of critically ill children with tools used to encourage bonding and memory making while enduring a lengthy PICU stay and beyond!
Verity’s Village exists to support families who receive a life-limiting diagnosis for their babies, who feel overwhelmed by the thought of starting a journey they never asked to take, who feel swallowed up by their circumstances and wonder if they will ever feel normal again…if it’s possible to ever feel JOY again.
Additional Support Organizations
Public Benefit Flying helps thousands of people each year with medical transportation, animal rescue, disaster response, environmental support, and many other reasons
To provide innovative Arts-in-Medicine programs for children coping with serious illness, their families, and the clinicians who care for them.
Birth Defect Research for Children, Inc. (BDRC) is a 501(c)(3) non-profit organization that provides parents and expectant parents with information about birth defects and support services for their children
We're on a mission to provide resources and support to parents grieving from infant loss, parents living the NICU journey, as well as the family and friends who form their support group. We'll share tools to help everyone - parents, extended family, friends, and the world.
Are you a parent experiencing the NICU journey? Research has found that one of the most successful emotional supports for parents experiencing this journey is to have someone by their side who has been on a similar journey. Connected Forever has trained peer mentors to support you every step of the way. The peer mentor relationship will mimic a friendship with someone who has been there and is able to provide you support, resources, and hope. At Connected Forever, we want every family member to know they are not alone on this journey.
Courageous Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. Here—in videos, podcasts, printable guides, Guided Pathways, and blog—you will find wisdom from families and pediatric care providers to help you get through each moment. And be the best parent you can be.
CuddlePea provides the “scent-connection” until skin-to-skin contact and breastfeeding are possible. When placed with baby, the familiar scent of Mom helps to continue the bonding process started in the womb.
Feeding Matters is the first organization in the world uniting families, healthcare professionals, and the broader community to improve the system of care for children with pediatric feeding disorder through advocacy, education, support, and research.
Fetal Health Foundation supports families receiving a fetal syndrome diagnosis, funds life-saving research, increases fetal syndrome awareness, and shares leading medical information on fetal syndromes.
When a child needs treatment at a medical facility far from home, transportation is one of the many costly dilemmas families face. Fortunately, there are volunteer pilots that make it their mission to offer free medical transportation to get patients wherever they need to go to get better. Check the following list to find pilot organizations in your area, and follow the links to find more information.
Hand to Hold® is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents.
ICU baby’s mission is to unite NICU families and provide emotional, financial, and informational support so that babies and families can thrive together. Our vision is to build a community of NICU families who empower each other to be confident and present in their own NICU journeys, leading to better outcomes.
LC was started because of my daughter, Lillian Rose. Lillian was diagnosed with Trisomy 18 at 27 weeks gestation but she did not let her diagnosis stop her. Despite being given a 5% chance of surviving to her first birthday, Lils overcame more than most people do in a lifetime and we were blessed with four breathtaking years with her. She was the most beautiful, amazing, positive, and determined person I know. To know her really was to love her. Lillian has inspired me to step out of my comfort zone and do something I’ve always dreamed of doing—starting a brand! Because Trisomy 18 has impacted my life so much, part of my brand's mission is to spread awareness by naming our items or collections after a medically complex warrior or angel.
10% of our profit will be put into the Lillian Rose Foundation, where care packages will be provided to medically complex infants and children, bereavement gifts to angel mamas, and making donations to hospitals close to our hearts. Thank you for helping us make a difference.
Lettercase is part of the National Center for Prenatal and Postnatal Resources and offers resources and support for medical providers and expectant parents first learning about a prenatal or postnatal diagnosis. We offer a clearinghouse of accurate, balanced, and up-to-date information about various genetic conditions for expectant parents first receiving the news. Our resources discuss common medical conditions, available supports and services, and common life outcomes in multiple languages.
Our charity provides products & services to various NICUs, shelters, & families needing support.
Little Hearts, Inc. is a national organization dedicated to providing support, education, resources, networking, and hope to families affected by congenital heart defects. Membership consists of families nationwide who have or are expecting a child with a congenital heart defect.
Little Mended Hearts mission is to inspire hope and improve the quality of life of heart patients and their families through ongoing peer-to-peer support, education, and advocacy
Mikayla’s Grace is our way of giving back to our community, and keeping our babies’ spirits and memory alive, while helping other families. Our goal is to give comfort and support to parents who find themselves in the stressful situations we were in. While our experience in the NICU with Mikayla was brief, it gave us a glimpse into how difficult it is to have a very sick baby in the NICU. After the loss of Chase at 10 weeks our eyes were opened to how difficult it is to lose a child even during the earlier stages of pregnancy. We realized that these losses are treated differently than the later losses, and that these families get very little support. In 2013 we expanded the mission of Mikayla’s Grace to include support for women experiencing early miscarriages as well with the first donation of our Baby Loss Comfort Packages which are meant to support families experiencing pregnancy loss prior to 16 weeks.
Miracle Babies is dedicated to helping perinatal mothers and their families during their time of need by providing transportation, mental health assistance and supportive services.
Nancy’s House provides one and three-day retreats, conferences, and workshops to build a community of support, nurture guests, and teach caregivers how to care for themselves while caring for others
We aim to improve the quality of life and neurodevelopmental outcomes for babies who begin their lives in the neonatal intensive care unit (NICU) through the unique contributions of neonatal therapy. We support neonatal therapists’ professional and personal development by providing highly focused continuing education, resources, standards, mentoring, and connection while advancing the specialty globally.
Over the past three decades, Neotech has emerged as an essential brand in NICUs around the world. We’ve also widened our footprint to include medical devices for the PICU, children’s oncology, and home health markets. Our groundbreaking products benefit both patients and clinicians as we focus on Making a Difference… In the NICU, PICU and Beyond.
Neonatal Intensive Care Awareness Month was established in 2014 by Project Sweet Peas, a non-profit organization. Project Sweet Peas is a 501(c)3 national non-profit organization coordinated by volunteers, who through personal experience have become passionate about providing support to families of premature or sick infants and to those who have been affected by pregnancy and infant loss.In an effort to build a community committed to increasing awareness of the challenges faced in the NICU, and to expand resources to NICU's nationwide, Project Sweet Peas sought to create a month dedicated to NICU awareness.
The mission of NICU Helping Hands is to develop hospital- and community-based programs that provide education and support for families with babies while in the NICU, during their transition from hospital to home, and in the event of an infant loss.
NICU Parent Network is a collaborative of NICU Support Organizations led by NICU Parent Professionals. We are the only professional association for NICU Parent Leaders in the United States. NPN provides a platform for these leaders to come together as a collective voice representing the needs & best interests of NICU families in all facets of healthcare policy, care guidelines, advocacy, education, and family support.
NoTube is a non-profit organization in the legal form of a private limited company, with the purpose of providing care and treatment of children with eating disorders and tube dependency.
Coloring book for families who have a new baby that needs special help.
Online shop selling books about the NICU, baby clothes, jewelry, and more.
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.
Project NICU offers connection, support, and community to all involved in the NICU Journey. From NICU Care Packages, Peer Support, Graduate Programming, events, and more we are here for every step of the journey. Led by NICU Parents, our programs are designed with first-hand experience with support by NICU medical professionals on our advisory board to truly create an environment where families and NICU Teams can feel supported.
Project Sweet Peas' mission is to empower and support families of fragile infants, and to inspire hope through remembrance for those affected by pregnancy and infant loss.
Includes resources organized by state within the USA and resources organized by country internationally.
Spare Key’s mission is to provide assistance to families with a critically ill or seriously injured family member. No matter the illness, no matter the injury, no matter the income. We help families “Bounce and Not Break” through our Help Me Bounce platform, harnessing the power of crowdfunding to connect thousands of families directly to donors. We are committed to helping families stay by their loved one’s side by relieving the stress, anxiety, and financial burden that comes with a medical crisis.
The Superhero Project works to assist families with babies born and residing in the Neonatal Intensive Care Unit of the hospital
We’re proud to donate swaddles through our swaddle4swaddle program to NICUs across the country to snuggle babies and delight their parents during a challenging time. Every time you place an Audrey & Bear order, a percentage of your purchase goes to support swaddle4swaddle.
Team A. Maise works to assist families in the NICU/PICU with comfort bundles, snack bundles, and more.
We are a global Quality Improvement Collaborative (QIC) for tracheostomy patients consisting of a multidisciplinary team of physicians, nurses, allied health clinicians, and patients/caregivers from a global community working together to disseminate best practices and improve outcomes. Dr. David Roberson, ENT specialist, from Harvard is the lead on the Collaborative.
The MAGIC Foundation is a charitable non-profit organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes, and diseases that affect a child's growth.
Parents in the NICU have been thrown a curve ball. Often, being admitted to the NICU wasn't on a parents birth plan, or even on their radar. It is a very difficult place to be and even more difficult to watch your baby spend his first few days or weeks there. Our mission is to give parents something to look forward to. Having a shirt that will fit even a one-pound baby gives hope; A light at the end of a very long tunnel. The moment you get to dress your baby for the first time is a memory not soon forgotten.
List of hospitals reported to assist babies born at 22 weeks gestation
Reading
This is the story of my daughter, Carmen, who lived in the Pediatric Intensive Care Unit at Fairfax Hospital. She was born at 34 weeks gestation after a fairly normal pregnancy. Four days after birth, Carmen received the first of many diagnoses that altered her life forever. Despite her health challenges, Carmen became the one who truly altered lives. This is Carmen's story, but it will forever be my song.
An article sharing information on fetal surgery and in-utero interventions
By Colleen Malloy, M.D., Monique Chireau Wubbenhorst, M.D., MPH, and Tara Sander Lee, Ph.D.
Whether you planned your NICU stay or whether this is all a complete surprise, this time in your life will be like no other. Your journey is worth cherishing and recording, no matter what lies ahead. This book is a guide to help you process and navigate the huge learning curve and emotional ups and downs of the days and weeks following Baby's birth. This 30-day journal gives you space to record all kinds of information, including: Baby's stats; people you meet with and learn from; doctors and nurses of the day; medical information; daily gratitude exercise; mood(s) of the day; your own thoughts and feelings; and more! With pro tips from experienced NICU moms sprinkled throughout, you'll find hope and encouragement for each day from a community who is cheering you on from afar.
As the father of a son with special needs, I felt compelled to share my son Jonathan's story by starting the blog "If You Have a Pulse". It's an honest journey of life and death moments, and miraculous second chances. Through words, photos and video, I hope it's a powerful way to share knowledge, experiences, and the highs and the lows of our life raising such an amazing little boy.
Facebook Groups
PrenatalDiagnosis.org wants to provide you with a wide range of support including links to helpful Facebook groups. However, we cannot verify the exact content that you will find on Facebook pages and groups, which vary widely by moderator, participants, and topics.
An online community for family members of children and young adults with emotional, behavioral, and developmental disorders