Alexandra's House

Last Thursday, November 20th, I met with Patti Lewis from Alexandra's House. Alexandra's House is a charitable perinatal-infant hospice house and refuge for abandoned or neglected babies. They provide spiritual, grief and practical support to families pregnant with babies who have a terminal diagnosis. They attend medical visits, develop compassionate and comprehensive birth plans, go to labor and delivery, maintain vigils through the babies' death, bathe and dress the babies, and participate in funerals and in long-term bereavement care, following up with families for three years after the babies' death. They are the "high touch" complement to "high tech" obstetrical care. Patti Lewis founded the house following her experience with her niece Alexandra's diagnosis of a fatal genetic disorder. She lives in an actual "house" near Westport, making it an ideal proximity to both Children's Mercy and KU Med.

I emailed Patti after we got Boston's diagnosis and explained our situation, outlining that Boston's diagnosis was not definitive and would not become any more definitive before he was born. I explained that because of this uncertainty, I wasn't sure how to prepare. I told her we still have hope that Boston could be born normal or with a mild form of Pierson Syndrome that may allow him to survive, which forces us to prepare both for his life and his death at the same time. She wrote me back and said she thought we would be a great match for our services. In situations like this, they help parents prepare a plan for the worst then put that on the shelf, so to speak, and enjoy the pregnancy.

So I met with Patti last week and she was wonderful! I was there for over two hours, but the time flew by. I took Brian and Clark back on Sunday for an open house and they got to meet Patti and look around the house. There are two apartments upstairs for people to stay in. If necessary, we would be able to come to the house for respite, naps, showers, etc., if Boston is in the hospital for an extended period of time. I am so grateful that such a giving place exists to meet our needs. The website for Alexandra's House is http://www.alexandrashouse.com Please check out the site and pray for the volunteers. The personal stories from the parents about their children are powerful and moving; I haven't ever been able to read one without crying.