Writing in the Philadelphia Inquirer, former Pennsylvania senator Rick Santorum says the Palin family is showing the nation “both the joy and the difficulty of having a disabled child.”

Santorum says he and his wife four months ago had a daughter, Bella, who was subsequently diagnosed with Trisomy 18, “a syndrome with a mortality rate of more than 90 percent in the first year.” Twelve years ago, they had a son with a “fatal birth defect”.

In a country where some politicians now promise to end suffering, and where our usefulness seems to be measured in dollars, these special individuals stand as complex, mysterious contradictions from a loving God.

They remind us that it is not just our capacity to achieve, but our capacity for sacrificial love that will change the character of America for the good. And that character will inspire true hope - and that hope does not disappoint.

The House has joined the Senate in passing a measure that disability rights advocates hope will fundamentally change the conversations that are taking place between pregnant American women and their doctors.

Passed on a voice vote on Thursday, the bill would provide for accurate, up-to-date information and support for parents who receive a diagnosis of Down syndrome or other disabilities such as spina bifida or cystic fibrosis either prenatally or up to a year after the birth of their child. President Bush is expected to sign it.

Passage of the measure marks the culmination of an unprecedented bipartisan effort that has joined supporters of abortion rights, led by co-sponsor Sen. Edward M. Kennedy (D-Mass.), with opponents of abortion, led by co-sponsor Sen. Sam Brownback, and disability rights advocacy groups. Kennedy is also a longtime advocate for people with disabilities.

While members of this loose coalition may have profound disagreements about what may be acceptable at the end of a pregnancy, they came together around another key question in prenatal care: What kind of information and support should be available to pregnant women if initial testing reveals the presence of a disability?

The question has become more urgent in recent years as more women are postponing childbearing, putting them at a greater risk of having pregnancies marked by genetic and other abnormalities, and as the offer of prenatal testing has become standard care.

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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.