RE: Reporter wins National Journalism Award for Article on Carrying Ill-Fated Pregnancy to Term. https://www.lifesitenews.com/ldn/2008/mar/08031304.html
To the editor,
A friend sent me the link today to your story about Lee Hill Kavanaugh of Kansas City, Missouri receiving a national journalism award for her story of baby Zeke, who was diagnosed around 20 weeks of pregnancy with a lethal birth defect. Your story was about the need for perinatal hospice services.
Your story also included a photograph of Zeke’s mother being comforted. The hand caressing her face was mine. I am the House Mother of Alexandra’s House, (https://www.alexandrashouse.com) a charitable perinatal hospice home in Kansas City, which I founded nearly 11 years ago in 1997 after the death of my niece, for whom the House is named, who died 45 days after her birth from a fatal genetic disease.
I am not writing to seek personal attention. Alexandra’s House seems hidden and while others use their gifts to write and speak about perinatal hospice, we are day in and day out quietly venturing out at 3 am or whenever called to a family in labor with a baby whose birth will bring their death.
All our services, supportive in nature, are free. We work closely alongside the families starting at the time of an adverse diagnosis. One hundred percent of our work is to parents pregnant with or recovering from the loss of a dying baby.
Our parents and their babies are the focus of our work, but Kavanaugh’s original story would never have been written had it not been for Alexandra’s House. Kavanaugh and her editor approached us wanting to follow a family.
We had been providing support to Zeke and his family as part of our usual care. We asked them if they would agree to open this very private experience to journalists and they agreed. They wanted to bring meaning to his life and help others. Alexandra’s House was laced throughout the original story and was excluded in yours.
It is important for mothers and fathers out there who are suffering through a challenged pregnancy to know that perinatal hospice is not just a concept but that there is help out there, like Zeke’s parents found, at a real place just a phone call or e-mail away.
Patti Lewis
Founder-House Mother
Alexandra’s House
For terminally ill and abandoned babies
816-931-2539 (ALEX)
https://www.alexandrashouse.com
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To the editor:
Thank you for reporting on the peri-natal hospice concept that is indeed spreading throughout the country.
As Paul Harvey might have added….”here’s the rest of the story”. It begins in Kansas City, Missouri.
Alexandra’s House (www.alexandrashouse.com) is actually a “home” as well as a service. Mothers in need may live at Alexandra’s House prior to and/or after the delivery of the babies in private rooms
with adjoining baths, kitchen and living areas. All services are free of charge.
While most babies with fatal conditions die prior to or shortly after birth, some of these babies do live for days or weeks. These mothers and babies are welcomed to Alexandra’s House for grief support, spiritual counseling and rest.
Since 1997 Patti Lewis, founder and executive director, has been the healing touch for parents whose babies slide from life into death in moments all too brief.
I hope you will take the opportunity to check out the web site and follow up with the rest of the story.
Sincerely,
Kathleen A. Sexton RN
Volunteer
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Dear LifeSiteNews Editors,
LifeSiteNews recently ran a well-written and informative article about reporter Lee Hill Kavanaugh (https://www.lifesitenews.com/ldn/2008/mar/08031304.html) winning the Pulliam Award. We want to thank you for publishing articles about prenatal diagnosis.
Perinatal hospice is one aspect of supporting parents. We need it, not only for babies whose lives are as brief as Zeke’s, but also for those who may live over a longer period. Because many babies born into a hospice mode of care will live not only for hours or days, but for months at a time, it is especially important that perinatal hospice not be thought of as only a place or way to carry and deliver a child who will die, but a way of embracing and living with a baby who is expected to die. Yet there is another approach we need to continually keep within our periphery.
Of the 3 to 7% of babies born with serious defects and/or syndromes, many of these are not babies who will be (or even should be) born into a perinatal hospice mode of care. Many can survive with the help of surgeries or life-sustaining treatments. Some will survive into adulthood with a wide range of intellectual and/or physical disabilities. W
When babies with these conditions are prenatally diagnosed, they too are aborted – but it is precisely because they can live. Expectant parents fear their babies’ lives will be burdensome, full of suffering, or for whatever other reasons, unbearable. Perinatal hospice will help parents welcome babies who are expected to die, but we also need to be aware of resources that encourage parents who are expecting a baby who will live . . . with disabilities or special medical needs.
Particularly relevant to this beautiful story about baby Zeke is the existence of a strong network of parents who reach out to families after a diagnosis of trisomy 13, Living With Trisomy 13. There are other orgs offering support and encouragement, too. There is a multi-diagnosis outreach that has been available for going on six years, BeNotAfraid.net.
Elizabeth Ministry, a parish-based organization, has helped numerous families dealing with a diagnosis for about 15 yrs now. Canadians have been blessed with Morning Light Ministry for many years. Carrying to Term Pages, which chronicles the life of a baby with anencephaly, has helped many parents come to terms with a fatal diagnosis. And there are newer orgs such as Prenatal Partners for Life and Hope for Trisomy 13 and 18.
While perinatal hospice is one important and commendable approach to offering life-affirming support to parents, we need a wider approach to parents who have a prenatal diagnosis. What we need is to make sure that we are offering the support that is currently and has been all along available to the newly diagnosed parents.
If every diocese, every pro-life website and outreach, and every person of good will would simply keep families receiving a prenatal diagnosis of any kind in their periphery and offer them appropriate resources that are already available, (such as those we listed) we may be able to help more and more families come to accept unconditionally the gift of life.
Very Sincerely,
Monica Rafie, founder of BeNotAfraid.net
Winfield, IL
ThereseAnn Siegle, founder of Living With Trisomy 13
Huntington Beach, CA
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