Global campaign to protect disabled infants

Excerpted from "Irish group Every Life Counts launches global campaign to end ‘incompatible with life’ label," LifeSiteNews. March 11, 2015 — Irish families have joined with international medical experts and disability advocacy groups to launch the Geneva Declaration on Perinatal Care at the United Nations. The Declaration, which is the centerpiece to a global campaign to end disability discrimination caused by the “incompatible with life” label, has already been signed by more than 200 medical practitioners and researchers and 27 disability and advocacy NGOs. It aims to improve care for mother and baby where a life-limiting condition has been diagnosed before or after birth.

At the event, families from Ireland, Northern Ireland, Canada, Spain and Switzerland said that the label “incompatible with life” was not a medical diagnosis and was causing “lethal discrimination against children diagnosed with severe disabilities, both before and after birth.”

Barbara Farlow, whose ground-breaking research led to a new understanding of the experiences of families where children had a life-limiting condition, said that the label “incompatible with life” had been shown to lead to sub-optimal care after birth and the phrase dehumanised children.

Professor Giuseppe Benegiano, former director of special programmes for the UN, said that the UN should give support for this important initiative against disability discrimination. Professor Bogdan Chazan, an imminent obstetrician from Poland, said that babies with a challenging diagnosis deserved better care than abortion.

Commentary

CMDA Member and Care Net Medical Advisor Sandy Christiansen, MD, FACOG: “The mark of a civilized society is the degree to which it protects its weakest most vulnerable members. Psalm 82:3 admonishes us to ‘Defend the weak and the fatherless; uphold the cause of the poor and the oppressed’ (NIV 2011). The Geneva Declaration is a beautiful example of the fulfillment of this passage.

“Routine prenatal testing seeks to detect fetal abnormalities before birth. With the discovery of a problem, what choices are offered? Data across the globe report that anywhere from 29 percent to 85 percent of fetuses with Down Syndrome are aborted.¹²³ But some families are choosing a different path and finding joy in the journey. Turning away from the offered termination of pregnancy for a fetal anomaly that has been pronounced ‘incompatible with life,’ some couples have instead chosen to embrace every minute of life their child has—both inside and outside the womb. They face pressure from healthcare professionals to abort and experience lack of understanding from family and friends. Yet, 97 percent of respondents in a 2012 study of families with children with trisomy 13 and 18 described their child as happy and parents reported these children enriched their family.⁴ Their experience was incongruent with the dismal picture predicted by their physicians. The most common negative comment made by parents in this study was a sense that healthcare professionals did not see their baby as having value, as being unique and as being a baby.

“A recent study looked at women who aborted and women who carried after learning their babies were diagnosed with a life-limiting diagnosis. The abortion group experienced more grief, depression and emotional stress, and they also had symptoms consistent with post traumatic stress disorder (PTSD) for up to seven years after the abortion as compared to the women who chose to carry group.

“Evidence is mounting to support the benefits of taking a hands-off approach to a life-limiting prenatal diagnosis and simply allowing couples to spend time with their unborn babies for as long as they have them. As Christian healthcare professionals, we should be prepared to offer families a different option to the default termination solution so often given for an adverse prenatal diagnosis. Words need to be chosen carefully, avoiding terms like ‘incompatible with life;’ instead, we should use words that affirm the baby’s life and value as a human being. Couples who choose to carry their child should be connected to resources that provide the support and understanding they desperately need.

“Perinatal hospice⁵ is a unique solution and can be thought of as ‘hospice in the womb.’ It is easily incorporated into routine prenatal care and birth planning. A team approach can include obstetricians, perinatologists, labor and delivery nurses, NICU staff, chaplains/pastors and social workers, as well as genetic counselors and traditional hospice professionals. It enables families to make meaningful plans for the baby's life, birth and death, honoring everyone.”<sup>6

1</sup>Siffel, C., Correa, A., Cragan, J., & Alverson, C. (2004). Prenatal Diagnosis, Pregnancy Terminations And Prevalence Of Down Syndrome In Atlanta. Birth Defects Research Part A: Clinical and Molecular Teratology, 70(9), 565-571.
²Khoshnood B, De Vigan C, Vodovar V, Goujard J, Goffinet F (2004) A population-based evaluation of the impact of antenatal screening for Down's syndrome in France, 1981–2000. BJOG 111: 485–490.
³Leroi, A. (2006). The future of neo-eugenics. Now that many people approve the elimination of certain genetically defective fetuses, is society closer to screening all fetuses for all known mutations? EMBO Reports, 7(12), 1184-87. Retrieved April 2, 2015, from http://embor.embopress.org/content/7/12/1184.
⁴Janvier A. Farlow B. Wilfond B. (2012)The Experience of Families With Children With Trisomy 13 and 18 in Social Networks Pediatrics Vol. 130:293 -298 (doi: 10.1542/peds.2012-0151).
⁵Hoeldtke, N., & Calhoun, B. (2001). Perinatal Hospice. American Journal of Obstetrics & Gynecology, 185(3), 525-29.
⁶Calhoun, B., Napolitano, P., Terry, M., Bussey, C., & Hoeldtke, N. (2003). Perinatal hospice. Comprehensive care for the family of the fetus with a lethal condition. Journal of Reproductive Medicine, 48(5), 343-8.

Resources

Perinatal Hospice Resources in the U.S.
CMDA’s Abortion Ethics Statement
CMDA’s Human Life Ethics Statement