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We can look back now and have no regrets

December 12, 2009

I missed this lovely piece published late October.  Three important  points to bring out of his article: First, it shows that even though receiving a prenatal diagnosis is scary, perinatal hospice can turn the experience around and help families bring out the best of their situation.  Second, rich reporting on attending physician comments confirms that doctors welcome life-affirming options for their patients.  Finally, we see the concept of hospice care expanding – baby Chloe had surgery to repair an omphalocele as a perinatal hospice patient. This sort of intervention is not typical for perinatal hospice models of care, but perhaps that is the point – models of care are becoming more and more customized to each baby’s needs and parent direction. Be sure to click to the original article to see a gallery of pictures – many are quite joyful!

Family shares how Hospice program prepared them for short time with daughter with fatal disorder

By Erin Albanese | The Grand Rapids Press

When Jody Kyser learned a few months into her pregnancy that her baby had a chromosomal disorder, Trisomy 18, she was certain about one thing: she would do what she could to make the child’s life comfortable, for as long as that might be.

But she had many questions and faced months ahead during which she, her husband, Kevin, and other children, Courtney, 14, Cameron, 11, Collin, 7, and Caden, 4, would need a lot of support.

There were plans to make — and not the kind the family had expected. People would ask about her pregnancy in the grocery store; the children needed to hear the news in an age-appropriate way; they had to decide how much medical intervention to seek, and she even had to face the heart-wrenching task of funeral planning for a baby girl she hadn’t seen face to face.

Her doctors referred her to the Perinatal Care Program, offered by Hospice of Michigan, which helped put things in place, answered questions she and Kevin hadn’t thought of, and served as a support unit. The program serves 10-12 families a year as a source for parents who have learned the child they are expecting has a life-limiting condition.

“For something you never expect to go through, we were very thankful for the compassionate care we had so close to home,” said Kyser, 41, of Spring Lake. continue

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