Perinatal hospices support families with a terminal prenatal diagnosis

From MSNBC.com:

Advances in prenatal screening mean that more families are receiving difficult diagnoses, and are making choices about whether to continue or terminate a pregnancy. Perinatal hospices aim to support families who receive a terminal prenatal diagnosis and decide to continue the pregnancy.

MSNBC spends time with Jeanne and Steve Deibert of Seattle, whose son Robbie was diagnosed in utero with Trisomy 18, a chromosomal condition that is usually fatal. Less than ten percent of babies who have it live for a year or more.

The Deiberts developed a plan to allow their son to live “with love and honor,” and worked with a Seattle perinatal hospice program to make it happen. They brought him home from the hospital and welcomed him into their lives. Robbie lived for 29 days.

“Robbie taught us to love what we have, when we have it, because time is measured,” Steve said in the eulogy he delivered at his son’s funeral. “Robbie has taught us to hold on tight– and to let go.”

The story is accompanied by a list of resources, but neglects to mention an important one:

The Trisomy 18 Foundation, which can be found at www.trisomy18.org.

This entry was posted on Thursday, March 27th, 2008 at 11:19 am and is filed under end of life, genetics, trisomy 18. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post