Newly Diagnosed?
You may have just received prenatal test results that reveal the heartbreaking news that your baby is not expected to survive very long after birth. This news is shocking, confusing, devastating.
How can this be?
What do I do now?
First, you can take time to research your options and imagine what each path might look like, both for you and for the baby. One option is to continue your pregnancy and embrace whatever time you may be able to have with your baby, before and after birth. A growing number of parents are welcoming this option. Parents who are considering terminating the pregnancy usually still have time to make that choice. A diagnosis like this leaves parents reeling. Many parents say they benefited from taking time to process their initial shock and grief before being able to make a clear decision about how to proceed.
If you are considering continuing your pregnancy, much support is available (see the resources for parents and other resources on this site) and you are not alone. Many hospitals offer specialized care for families like yours, providing support throughout the remainder of the pregnancy and providing exceptional care for the baby and family during and after birth. Sometimes called perinatal hospice or perinatal palliative care, this support includes planning for your baby’s birth, making preliminary medical decisions about care for your baby after delivery, providing emotional support for the family, and assisting with memory-making such as photography. Palliative care follows the baby’s lead and can also include medical treatments to improve the baby’s life.
Palliative care also address a major concern for parents: whether the baby will suffer. Many life-limiting conditions are not inherently uncomfortable for the baby. (Read A Gift of Time for parents' poignant descriptions of their baby's peaceful life and death.) If pain is a possibility, it can be treated aggressively and effectively, and some pain can be avoided altogether by careful decisions about medical interventions for your baby. The mother's health is also a primary concern. Many life-limiting conditions in the baby do not pose any greater physical risk than the normal risks of pregnancy. Research also suggests that continuing the pregnancy provides a psychological benefit to the mother. (For medical references, see the FAQ page.)
You can ask your caregivers if they have a perinatal hospice & palliative care program, or check here to see if there is a program near you. Even without a formal program, you can work with your caregivers to create a loving experience for you and your baby. You still have a profound opportunity to parent your child. Parents who have traveled this path before you have found that it can be a beautiful, deeply meaningful, and healing journey.
Continuing the pregnancy is not about passively waiting for death. It is about actively embracing the brief, shining moment of this little life.
