Hopelessly in Love- International Down Syndrome CoalitionIf 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.

Questions and Answers

When is prenatal testing done?

Prenatal testing includes screening and diagnostic tests throughout pregnancy. Screening tests (such as ultrasound, non-invasive blood tests and chorionic villi sampling) can be performed as early as 10 weeks. Diagnostic tests (such as amniocentesis) are typically performed after the 15th week of pregnancy.  Tests are used to identify conditions such as Down syndrome and spina bifida. Results are not necessarily conclusive, but may indicate a higher risk for a particular condition.

If the child is going to die anyway, why not just get an abortion? Isn’t it the same outcome?

Abortion is the intentional ending of a child’s life. For this act, a mother will have to not only cope with the grief of the diagnosis and the death of her child, but she will also have to grieve for the part that she played in her child’s death. (Personal testimonies from post-abortive women show that abortion may lead to a lifetime of grief.) By carrying the pregnancy to term, a mother has the opportunity to cherish her child’s life and to be with this little one when he or she naturally passes.

What about when the child will be born with a disability?

For children who will be born with a disability or a disorder, there are many organizations and support groups who are available to you to help you understand your child’s condition and to prepare you to care for your child. (Please see listed resources below.)

Will the mother suffer mentally or emotionally from continuing such a pregnancy?

“Research suggests that women who terminate for fetal anomalies experience grief as intense as that of parents experiencing a spontaneous death of a baby (Zeanah 1993) and that aborting a baby with birth defects can be a “traumatic event … which entails the risk of severe and complicated grieving.” (Kersting 2004) One long-term study found that “a substantial number … showed pathological scores for post-traumatic stress.” (Korenromp et al, 2005) And a recent followup study found that 14 months after the termination, nearly 17 percent of women were diagnosed with a psychiatric disorder such as post-traumatic stress, anxiety or depression. (Kersting 2009) Termination is not a shortcut through grief. In contrast, parental responses to perinatal hospice are “overwhelmingly positive” (Calhoun & Hoeldtke 2000), and parents report being emotionally and spiritually prepared for their infant’s death and feeling “a sense of gratitude and peace surrounding the brief life of their child” (Sumner 2001).” — from PerinatalHospice.org

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. — Mrs. Keller, 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 can find the light in the darkest places of my soul and reflect them with a warmth that rivals the sun.  You’re my light in the dark and it’s a privilege to be your dad.Heath White

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…. –Heath White

My daughter is not some abnormal freak … She can, and does, lead a happy, fulfilled life.Mother of a 5-year-old girl with a cleft lip and 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.
  • 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.

Resources

If you or a friend are seeking more information about prenatal diagnosis, perinatal hospice, and like-minded organizations, please see the following resources:

Perinatal Hospice and Palliative Care

Be Not Afraid

Fetal Hope Foundation

All that Love can Do

Video Testimonies

Lacey and Christian BuchananInspirational story of a mother who chose life for her son (Christian), who was born with a rare disorder.

Perfect: Heath White’s confession of coping with his daughter’s diagnosis and building a loving relationship with her.

Recommended Reading

A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be BriefWritten by Amy Kuebelbeck and Deborah L. Davis, Ph.D

 

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