Tuesday, March 13, 2007
A Place to Turn When a Newborn Is Fated to Die - N.Y. Times
The day after Alaina Kilibarda was born, her breathing started to falter, as her family knew it might. During the pregnancy, doctors had told James and Jill Kilibarda that their baby had a lethal genetic problem that would probably end her life within hours of birth.
Most couples choose to have an abortion when they learn that the fetus has a fatal condition. But experts say about 20 to 40 percent of families given such diagnoses opt to carry the pregnancy to term, and an increasing number of them, like the Kilibardas, have turned to programs called perinatal hospice for help with the practical and spiritual questions that arise.
...
“Families can choreograph their child’s very brief life with their family,” said Lizabeth Sumner, palliative care coordinator at Elizabeth Hospice in Escondido, Calif. “Sometimes they may have a matter of minutes, so they decide beforehand who can hold the baby, who will cut the umbilical cord, who will hold the baby when you know he is going to die.”
...
The Newells had informed few of the pregnancy. Now, they had to tell family and friends that their child had life-threatening problems. In the first three weeks after they spread the news, no one called.
...
Alaina has Trisomy 18, one of several genetic anomalies that occur when a child has three chromosomes, rather than the normal two, in the 23 pairs of chromosomes people have. The most common disorder is Trisomy 21, which is Down Syndrome. Alaina has three chromosomes on the 18th pair, a condition so severe that something is wrong with every cell in her body, Mr. Kilibarda said. Most babies with Trisomy 18 die shortly after birth, often because they stop breathing. Alaina is among the rare 10 percent who live past two months. ...
The day after Alaina Kilibarda was born, her breathing started to falter, as her family knew it might. During the pregnancy, doctors had told James and Jill Kilibarda that their baby had a lethal genetic problem that would probably end her life within hours of birth.
Most couples choose to have an abortion when they learn that the fetus has a fatal condition. But experts say about 20 to 40 percent of families given such diagnoses opt to carry the pregnancy to term, and an increasing number of them, like the Kilibardas, have turned to programs called perinatal hospice for help with the practical and spiritual questions that arise.
...
“Families can choreograph their child’s very brief life with their family,” said Lizabeth Sumner, palliative care coordinator at Elizabeth Hospice in Escondido, Calif. “Sometimes they may have a matter of minutes, so they decide beforehand who can hold the baby, who will cut the umbilical cord, who will hold the baby when you know he is going to die.”
...
The Newells had informed few of the pregnancy. Now, they had to tell family and friends that their child had life-threatening problems. In the first three weeks after they spread the news, no one called.
...
Alaina has Trisomy 18, one of several genetic anomalies that occur when a child has three chromosomes, rather than the normal two, in the 23 pairs of chromosomes people have. The most common disorder is Trisomy 21, which is Down Syndrome. Alaina has three chromosomes on the 18th pair, a condition so severe that something is wrong with every cell in her body, Mr. Kilibarda said. Most babies with Trisomy 18 die shortly after birth, often because they stop breathing. Alaina is among the rare 10 percent who live past two months. ...
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