The Right Choice Isn't Always the Easy One

March 24, 2008

Chromosomal abnormalities occur in about 1 out of 6,000 live births, but many babies who have them die before birth or shortly thereafter.

Chromosomal abnormalities occur in about 1 out of 6,000 live births, but many babies who have them die before birth or shortly thereafter.

Jeanne Deibert is one such woman who had to make a difficult decision about the fate of her unborn child, following the negative results of an amniocentesis that proved her baby would be born with Trisomy 18. Trisomy 18 is the second most common trisomy and occurs when a baby has three of the eighteenth chromosome. This results in 47 chromosomes instead of the normal 46 in the affected cells. Trisomy 18 is also called Edwards syndrome (or Edward's syndrome) and occurs in about 1 out of 3,000 live births. Unlike Down syndrome, Trisomy 18 is usually fatal, with most of the babies dying before birth and those who do make it to birth typically living only a few days. However, a small number of babies (<10%) live at least one year.

In fact, a British study in 2007 found that about 40 percent of families with a terminal prenatal diagnosis decided to continue the pregnancy when perinatal hospice was offered.

“The ability to diagnose these problems has absolutely raced ahead of the ability to care for these families,” says Amy Kuebelbeck, author of the book "Waiting with Gabriel," a memoir about her deceased son, who was diagnosed prenatally with a deadly heart defect in 1999.

In response to the increasing number of families with experience in perinatal death, about 55 perinatal hospice programs have opened up around the US over the last 10 years, says Kuebelbeck, who tracks them on her website. The programs are designed to provide medical and emotional support for families with a terminal prenatal diagnosis who decide to continue the pregnancy. A list of related hospices are provided, as are resources for parents, resources for caregivers, andbackground information on the authors.

Whatever the decision, there's no question it's a difficult one for expectant parents, even after the fact. The grieving process can take place before the child is even born, and no diagnosis - however fatal - can alleviate that.

Additional ResourcesBrief Encounters

Carrying to Term

The Compassionate Friends

M.I.S.S. Foundation

Pregnancy Loss and Infant Death Alliance

Waiting With Love