Culture & Religion
July Sat 24, 2010
In 1997 cardiac care nurse Patti Lewis opened her home and her heart to dying babies and their families. Alexandra’s House, named for Patti’s niece who died in infancy, has now served hundreds of infants with terminal and sub-terminal anomalies, by offering their parents the love and support they need to accompany their children through their short lives. From the moment fetal anomalies are diagnosed in utero through the birth and death of the infants, Patti and Alexandra’s House are there to offer emotional and material support to families at no charge.
Whether a family moves into Alexandra’s House for pregnancy, visits Patti for counseling, or only hears about her for the first time when they receive a care package from her in the hospital, they all feel loved and served. Patti spoke with ilsussidiario.net to describe how she communicates her love to dying children and her families, and to explain why perinatal hospice care is so desperately needed.
To see why Patti was inspired to work with dying babies, and how Alexandra’s House got its name and its start, read it in her own words in her article Love Story.
What kind of help and support do families of terminally ill infants typically need? What do you do to meet their needs?
Through Alexandra's House I have had the privilege of witnessing the births of and holding hundreds of babies with anomalies like anencephaly( most common), T13, T18, potter’s syndrome, cardiac and other critical malformations.
The primary support their families need includes: To know they are not alone, to realize that they are not being punished, and to understand that eventually they will find great meaning in carrying a baby to term who will die anyway. They need to hear that all their questions and fears are normal. They need to know they will survive this and find joy again, even during this challenging time.
Alexandra's House is a community based, all volunteer, peer-driven perinatal hospice support system for parents pregnant with babies with lethal or sub-lethal anomalies. While its foundation is rooted in faith, its services offer a practical solution in meeting the time-intensive needs of families in these situations.
To answer families’ needs we swaddle them with support – defined by the specific family and its needs – throughout the pregnancy, delivery, baby’s life and death, the funeral service and years after. We meet them at the time of diagnosis – anywhere from 11 weeks to 20 weeks and beyond, not simply at the birth. Then we accompany them from that point forward. Their suffering occurs during the prenatal time and support during this period is crucial.
Services include: bringing meaning to suffering, assistance in grief resolution, parent-parent partnering, birth planning, funeral planning, long-term support, one to one and group meetings, pre-natal and post-natal housing, if required. If a baby survives and is dismissed from the hospital, the family can stay at AH for the duration of their life. Professional nursing services are provided through a licensed hospice agency.
We will also bury fetuses of any gestational age and will bury any baby who dies of any cause in the community – including homicide - if the family can’t or won’t.
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