From the Grand Rapids [MI] Press:

The Perinatal Care Program provided by Hospice of Michigan offers comfort and guidance to families coping with a prenatal diagnosis of a life-limiting condition. (At left, Jody Kyser and her daughter Chloe, who had Trisomy 18).

The program is one of only four in the state that offers support to such parents and helps them deal with the uncertainty of the diagnosis — answering questions like how to give the news to the other children, how to deal with questions about the pregnancy, how much medical intervention to seek, and how to plan a funeral.

“It’s really nice to be able to offer families something more,” said Trudy McKanna, a genetics counselor. “You feel like you give them perhaps the worst news of their life, and you want to be able to help them. If there’s nothing you can do to help the baby medically, you at least want to be able to take care of their emotional needs and their family needs.”

(Photo from Grand Rapids Press)

From the Today Show, with video:

Ginny and Matt Mooney learned before birth that their son Eliot would be born with a rare genetic syndrome called Trisomy 18.  Doctors told them that if their son lived through childbirth, he would probably not survive more than a few weeks. They decided to document and celebrate their son’s short life, producing a powerful video that has garnered millions of views on Youtube.

Eliot lived 99 days; at his funeral, friends and family released one balloon for each day he lived.

The Mooneys have since had a daughter, Hazel. They say they cherish the time they spent with their son, and that his life has changed them for the better.

More info on Trisomy 18 at the Trisomy 18 Foundation.

Anderson Cooper’s 360 on CNN carries two first-person accounts from women who received prenatal diagnoses of fetal abnormalities. Lynda Waddington, who received a diagnosis of anencephaly, got an abortion; Diane Elder (left), who got a diagnosis of Trisomy 18, carried her child to term. The Waddington interview aired first; Elder wrote the show an email in reponse to it, and was subsequently asked to appear on camera. (Video here.)

Elder chose not to have an abortion following the diagnosis of Trisomy 18 in the fifth month of her pregnancy, “even though medically and legally she had every right to,” Cooper said. Her child was born naturally and lived for 12 hours. Elder says she wanted her child to die a natural death. “I did not want my child to die at my hand.” An excerpt:

Anderson Cooper: Do you regret it, looking back on it?

Diane Elder: Not it in one — not one minute of it. She died peacefully with no pain. The suffering was ours for two weeks, of course, at least two weeks. Really a whole year. We were in mourning for her, as you would grieve over any loved one who dies. That’s a normal part of life. You can’t get away from the fact that people die and people get sick and they die. But we felt very clean when it was over. And as though the situation was — there was closure. There was a resolution.

Anderson Cooper: Obviously, other women, other families in that situation make choices. Do you believe that women should have the right to make that choice?

Diane Elder: When a baby is a fully formed, living baby, I don’t think that really we’ve ever had the choice to take a life at that stage. I think that that’s a fully formed baby. I mean, I think you had some of the pictures up there. You saw her. She was a fully formed baby. She was born early, by the way. She came out at eight months.

Waddington said George Tiller “most likely” saved her life by terminating her pregnancy following a diagnosis of anencephaly. Waddington, who has written about her abortion, did not appear on camera; she said she has received threats in the past. An excerpt:

Cooper: … the argument you hear probably most often from even some people who support abortions in general that if it’s just the mental health of the mother, the depression of the mother, then that’s not legitimate enough reason. And you say that’s not true. That’s inappropriate.

Waddington: I do believe that’s inappropriate. I think that’s a decision that the mother and the doctor and the family should be able to make on their own. We wouldn’t look at someone suffering from cancer and say that you’re too depressed to make your decisions regarding your family and your life. Why do we put that on women?

(Photo from CNN video)

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.

By Patricia E. Bauer

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.

(more…)

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.