Fetal Anomalies & Special Diagnoses
This page includes information and links to local organizations with which the Respect Life Office has directly worked to provide families with life-affirming support during a time of need. To learn how your organization can be included in our list of resources, please contact the Respect Life Office.
Alexandra's House -- 638 West 39th Terrace, Kansas City, MO 64111, (816) 931-ALEX (2539) , www.alexandrashouse.com
Alexandra’s House is a local community based, all volunteer, peer-led perinatal hospice and infant care system for parents pregnant with babies with lethal or sub-lethal anomalies, for pregnancies that end unexpectedly at any point, from any cause, and for infants who die in the community, any cause. Alexandra’s House does not interfere with or substitute for any existing medical, social, or hospice agencies’ services. What it does is to help fill in the many gaps in care that do exist, as defined by those who have lived the experience of caring for a dying unborn or newborn baby.
Short videos about Alexandra's House:
The ideal time to consult Alexandra’s House is at the time of diagnosis or loss so parents are fully informed and to help alleviate some of the acute anxiety and very common feelings of isolation and abandonment. Alexandra’s House does not charge for its services nor does it accept contributions from people they serve.
- 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 and baby can stay here for the duration of their life. Professional nursing services are provided through a licensed hospice agency.
Please prayerfully consider visiting www.alexandrashouse.com or emailing firstname.lastname@example.org to learn more about Alexandra’s House and how you can provide much needed healing to your fellow-parishioners, family and friends who are suffering. In the meantime, please review Supporting Families Who Receive a Prenatal Diagnosis, an on-line resource available from USCCB.
Down's Syndrome Guild of Kansas City -- 10200 W. 75th Street, Suite 281, Shawnee Mission, KS 66204, (913) 384-4848, www.kcdsg.org
Receiving a diagnosis that your baby will have Down syndrome can be overwhelming. We are sure you are experiencing a range of emotions as you adjust to the diagnosis of Down syndrome. We invite you to contact our organization to offer you support. Contact email@example.com to be added to our mailing list, to request a welcome basket and receive Family and Friends support packets, to request a parent to parent match or to receive a support breakfast invitation.
Support Organization for Trisomy (SOFT) -- www.trisomy.org
SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and other related chromosomal disorders. Support can be provided during prenatal diagnosis, the child’s life and after the child’s passing. SOFT is committed to respect a family’s personal decision and to the notion of parent-professional relationships.
Scott & Sheryl Crosier, SOFT MO Chapter Chairpersons, 1155 Hawken Place, Webster Groves, MO 63119, (314) 961-8035, firstname.lastname@example.org
St. Louis Fetal Care Institute -- 1465 S. Grand Blvd., St. Louis, MO 63104, (314) 577-5600, www.cardinalglennon.com
SSM Cardinal Glennon Children’s Medical Center, SSM St. Mary’s Health Center, and the St. Louis University School of Medicine collaborated to form the St. Louis Fetal Care Institute in the Spring of 2009. The Institute was formed under the principle that with advanced diagnostic tools, a team-oriented approach, and highly skilled, dedicated specialists, unborn babies with complex problems would have better outcomes and families would have better patient satisfaction.
The St. Louis Fetal Care Institute is comprised of a team of knowledgeable fetal and pediatric surgeons and maternal fetal medicine specialists, with the guidance of fetal care coordinators, neonatologists, pediatric specialists, anesthesiologists, genetic counselors and ultrasound technicians. The goal of the St. Louis Fetal Care Institute is to provide a positive experience that recognizes the uniqueness of each case and family situation. The entire team aims to provide families with the most accurate diagnosis, while helping them understand their situation and prepare for the birth and needs of their baby or babies.
Prenatal Partners for Life -- PO Box 2225, Maple Grove, MN 55311, (763) 772-3868, www.prenatalpartnersforlife.org
Prenatal Partners for Life is a group of concerned parents (most of whom have or had a special needs child), medical professionals, legal professionals and clergy whose aim is to support, inform and encourage expectant parents with an adverse prenatal diagnosis or new parents raising a child with special needs after birth..
PPL offers support by connecting parents facing an adverse diagnosis with other parents who have had the same diagnosis. They have many resources such as adoption agencies with clients waiting to adopt and love a special needs child should a parent feel they cannot care for them.