Jennifer and Jeff Kennedy hold a picture of their son, Jordan, who died of a rare birth defect. Workers from the Pathways Hospice Foundation helped them throughout the ordeal.

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PARENTS SAY HOSPICE WAS GODSEND DURING CRISIS WITH ILL INFANT

when Jennifer and Jeff Kennedy brought their new baby boy, Jordan, home from the hospital, there were balloons decorating the front door, just like the ones adorning the neighbor's house where a newborn also was arriving home. But the similarities stopped there.

``Within two hours of our arrival home, hospice was at our house,'' Jennifer remembers. ``I remember sitting here and just crying. I'd been home with my little son for two hours and I had hospice there.''

Jordan, born at 6:49 a.m. on July 26, died Oct. 28 at 2:30 a.m. Jordan suffered from a chromosomal birth defect called Trisomy 18. The disorder was detected when Jennifer was five months pregnant and in the midst of preparing for the arrival of her baby.

``This doesn't happen,'' says Jennifer, who worked in real estate until she quit her job to move in with her parents in Los Gatos to be closer to Stanford University Hospital. ``I'd never even heard of it.''

Babies with Trisomy 18 are born with one extra number 18 chromosome. They are small at birth and have a variety of life-threatening conditions, including holes in the heart, breathing problems and severe mental retardation. Many do not live to see their first birthday. Often, if the disorder is diagnosed in utero, the doctor recommends abortion, an option to which Jennifer and Jeff were strongly opposed.

Now, just a few weeks since Jordan's death, they are still in shock, but they also are able to articulate the many blessings his short life brought to them and their families and friends. During the months that Jordan lived, hospice workers provided respite care, medical support and frequent visits from an experienced social worker. Thanks to Pathways Hospice Foundation, they survived the ordeal with a determination to help couples facing similar situations.

Since they have become experts in their son's disorder, the Kennedys plan to build a Trisomy 18 Web site offering information, support and resources. They hope no one else has to feel as alone as they did when they received the diagnosis.

``When I first heard of hospice, I thought of death,'' Jennifer says. ``By the end of our experience, all I could think of was that they were great.''

Pathways provides its extensive services for free to any family in need. A donation of $50 (2A) provides groceries, $25 (2B) buys a special toy for a child, $75 (2C) buys bedding and other comfort items, $100 (2D) provides an afternoon of respite care for an exhausted caregiver, and $180 (2E) provides a counseling visit from a social worker.