IT CAN BE HARD TO FIND RELIABLE INFORMATION ABOUT LIFE-LIMITING CONDITIONS AND THEIR EFFECTS ON MOTHERS AND FAMILIES. SCIENTIFIC FINDINGS ON CONGENITAL ANOMALIES—AND HOW TO BEST OFFER SUPPORT TO PARENTS WHO RECEIVE A PRENATAL DIAGNOSIS—HAVE ONLY RECENTLY BEGUN TO BE DOCUMENTED. WE INTERVIEWED PERINATAL EXPERTS AND PULLED TOGETHER RESOURCES TO HELP YOU GATHER ANSWERS AS YOU NAVIGATE THE JOURNEY AHEAD. 

 

Diagnosis Glossary
We understand the delicate balance between wanting answers and needing sensitivity. Our glossary of diagnoses and terminology was designed to respect parents’ emotions while providing clear information to further enhance conversations between doctors and their patients.

Make an Online Birth Plan 
Your birth plan outlines your wishes for you and your baby throughout the birth and in the moments that follow. While some of the questions may be hard, addressing them before your baby’s birth ensures your needs are met. Start when you’re ready, then save, download, or print your plan to share with your care team. 

Your Multidisciplinary Care Team
There are many people available to help you coordinate and prepare for your birth experience. We’ve put together this guide to help you understand the roles and responsibilities of different caregivers. 

A Few Things You Might Want to Ask
We’ve put together a list of questions you can take to your next appointment to help gather the information you need. 

Understanding Your Journey
We’ve put together this series of videos dedicated to sharing words of advice from physicians, social workers, and parents who have been there. 

Neonatal Donation for Transplant and Research
Neonatal donation is a viable option for babies who have received a prenatal diagnosis of a life-limiting condition. Each family’s experience can differ depending on the type of donation they’re considering as well as the research needs and criteria.