If a prenatal diagnosis returns unexpected results, parents may be faced with questions that they never wanted to answer:
Why? Why us? Why our baby? What will we do? How can I afford to care for this child? Will my child be happy? Will we be happy?
It is unarguably difficult and upsetting to learn that one’s preborn child may be born with disabilities or may even die before or soon after birth. This can be devastating news for many parents, and we recognize that there will be sadness, frustration, and stress. We offer the following questions and answers, as well as additional testimonies and resources to provide you with support and guidance.
Here are some testimonies of parents whose children were born with disabilities:
You will never regret having the children that you have. You will always regret the children that you don’t have.
Mother of James Nicholas
Before you were born, I only worried about how your disability reflected on me. Looking at it now, there’s no better mirror in the world...You’re my light in the dark and it’s a privilege to be your dad.
If I can keep one family, one person, from having to live with the guilt and almost making the mistake that I almost made, it’s going to be worth the pain…
My daughter is not some abnormal freak … She can, and does, lead a happy, fulfilled life.
Mother of a 5-year-old with a cleft lip & palate
What to Do
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 like yours.
- 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.
If you or a friend are seeking more information about prenatal diagnosis, perinatal hospice, and like-minded organizations, please see the following resources: