PREGNANCY
I received a poor prenatal diagnosis.
Below, we have included a list of resources that address difficult and fatal prenatal diagnosis. If you have discovered that your preborn child may one of these conditions, here’s what you can do:
Talk to your family about your pregnancy and your child’s diagnosis.
Research for more information about the diagnosis. Contact organizations and support groups so that you can talk to others who have shared this experience.
Find a specialist trained in handling pregnancies.
Work with your doctor to prepare a plan to ensure that you and your child receive the proper medical attention during the pregnancy and after birth.
Locate a hospital that is equipped to deliver and care for your child. (The hospital should have a Level III newborn intensive unit.)
Talk with your family about your expectations and needs after your child is born.
Perinatal Hospice and Palliative Care
https://www.perinatalhospice.org/
Facebook: https://www.facebook.com/PerinatalHospice/
Contact: https://www.perinatalhospice.org/contact
PerinatalHospice.org is a clearinghouse of information about perinatal hospice & palliative care, including many resources for parents and caregivers as well as an international list of more than 300 programs.
Be Not Afraid
Facebook: https://www.facebook.com/BeNotAfraid.Net/
Email: tracy.winsor@benotafraid.net
Contact: http://www.benotafraid.net/Contact-Us
Be Not Afraid (BNA) is a private non-profit organization which provides comprehensive case management to parents carrying to term following a prenatal diagnosis. Our staff and peers strive to develop a relationship of trust while providing for the emotional and tangible needs of parents at diagnosis, during pregnancy, at birth and during the post postpartum period for up to one year.
Prenatal Partners for Life
http://prenatalpartnersforlife.org/
Email: mary@prenatalpartnersforlife.org
Phone: (763) 772-3868
Prenatal Partners for Life is a group of concerned parents, medical professionals, legal professionals and clergy whose aim is to support, inform and encourage expectant or new parents with a special needs child. Prenatal Partners for Life is dedicated to providing families, either expecting, or those who have had, a child with special needs or a life-limiting condition, the support, information, and encouragement they need to make informed decisions involving their preborn or newborn child’s care. Their goal is to provide honest, practical information and support about parenting a child with special needs by linking expectant parents or new parents with other parents who have had the same or a similar diagnosis. This support can be provided in person, over the phone, by email or in written correspondence and may include a variety of practical support that is based on each family’s individual needs.
Recommended Resources: http://prenatalpartnersforlife.org/resources/
Fetal Health Foundation
https://www.fetalhealthfoundation.org/
Facebook: https://www.facebook.com/FetalHealth
Phone: (980) 224-0398
Email: info@fetalhealthfoundation.org
The Fetal Health Foundation is a 501(c)(3) non-profit charity that provides factual medical information on fetal syndromes, provides unconditional support to families dealing with these syndromes, provides advocacy and awareness around fetal syndromes, and provides research grants funding new treatments and technologies providing hope to save our babies.
All That Love Can Do
http://allthatlovecando.blogspot.com/
Email: RememberingSamuelEvan@gmail.com
All That Love Can Do provides support for families who choose to continue their pregnancies after a fatal diagnosis. This blog offers testimonies from families’ like yours, as well as helpful guides and recommended resources.
NICU Helping Hands
https://www.nicuhelpinghands.org/
Angel Gown Program: https://www.nicuhelpinghands.org/programs/angel-gown-program/
Facebook: https://www.facebook.com/nicuhelpinghands/
Phone: (817) 668-5191
Email: info@nicuhelpinghands.org
NICU Helping Hands is an organization that develops hospital and community-based projects 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. Our Angel Gown® Program Project NICU NICU Mom CONNECT One-On-One Mentoring Family Assistance Program
ReVIV Family Support Foundation
*Ohio*
Facebook: https://www.facebook.com/pg/revivfamilysupport/
Phone: (513) 532-9360
Email: info@viviansvictory.org
ReVIV Family Support Foundation (previously called Vivian's Victory) provides personalized practical and emotional support to families who have a child that receives a life altering or life threatening diagnosis. At reVIV, we work in conjunction with the child’s care team to meet the family as close to the child’s diagnosis as possible.We then have significantly trained and committed volunteers work with the families to fulfill a mutually agreed personalized care plan. Each plan is re-evaluated and modified after 6 months. We promise to be a part of the family’s life until they feel confident without the support reVIV provides. Our non- clinical case management method of care allows for reVIV to be the most consistent support for the family while navigating their new normal. ReVIV offers family support programs like:
Family and sibling support via activities and resources
Bedside hospital support
Home support
Bereavement support
Special Books by Special Kids (SBSK)
https://www.facebook.com/specialbooksbyspecialkids/
Email: specialbooksbyspecialkids@gmail.com
SBSK is a 501(c)3 organization that seeks to normalize the diversity of the human condition under the pillars of honesty, respect, mindfulness, positivity and collaboration. This multi-media movement supports the acceptance and celebration of all members of the neurodiverse community regardless of diagnosis, age, race, religion, income, sexual orientation, gender or gender expression. SBSK provides video interviews of people living with a variety of conditions and is a great platform to explore to better understand the experiences of individuals and families impacted by unique diagnoses.