Avoiding Baby Doe Redux: Dismantling the Born Alive Infants Protection Act Myth Jonathan M. Fanaroff MD, JD Assistant Professor of Pediatrics Director, Rainbow Center for Pediatric Ethics Associate Medical Director, NICU Rainbow Babies & Children’s Hospital

I do NOT have any financial conflicts to disclose I will NOT be referencing any off-label or investigational use of any drugs or products All photos are publicly available and either without copyright or used with permission Avoiding Baby Doe Redux: Dismantling the BAIPA Myth Disclosures

Learn about the Born Alive Infants Protection Act (BAIPA) Analyze the reactions and beliefs of the medical and legal community to the BAIPA Discuss the ethical and legal implications of theses reactions Avoiding Baby Doe Redux: Dismantling the BAIPA Myth Objectives

Avoiding Baby Doe Redux: Dismantling the BAIPA Myth The Importance of History? “Those who cannot remember the past are condemned to repeat it.” - George Santayana “The only thing we learn from history is that we learn nothing from history.” - Friedrich Hegel

Baby Doe died April 15, 1982 The Indiana Courts refused to intervene President Reagan was upset “The judge let Baby Doe starve and die” Surgeon General C. Everett Koop spoke out against the decision Avoiding Baby Doe Redux: Dismantling the BAIPA Myth Image permission/author – Kari Reine Baby Doe

Federal Government struggled to find a mechanism to intervene DHHS developed regulations on care of newborns with birth defects Struck down by the U.S. Supreme Court October 1984 Congress passed amendments to the child abuse laws These “Baby Doe Laws” are still in effect as the Child Abuse Prevention and Treatment Act (CAPTA) Avoiding Baby Doe Redux: Dismantling the BAIPA Myth Baby Doe

Avoiding Baby Doe Redux: Dismantling the BAIPA Myth “[T]he [Baby Doe] rules are often misinterpreted: they are seen, mistakenly, as the legal prods forcing over treatment of such infants.” Copyright ©2005 American Academy of Pediatrics Used with Permission Pediatrics 90(6): 971.(1992) Impact of Baby Doe Laws

Creates a Federal definition of live birth “a beating heart, pulsation of the umbilical cord, or definite movement of voluntary muscles.” Irrelevant - Why the birth occurred - If the cord was cut Avoiding Baby Doe Redux: Dismantling the BAIPA Myth Born Alive Infants Protection Act – Pub Law (2002) White House Photo by Paul Morse

F. Sessions Cole, M.D. –parents, fearing legal consequences, will prolong the “medically inevitable dying process.” Gordon B. Avery, M.D. – these definitions will “immensely cloud” the work of separating “indicated measures” from “what would be futile and actually dehumanizing.” Avoiding Baby Doe Redux: Dismantling the BAIPA Myth BAIPA – Neonatologist Congressional Statements

Avoiding Baby Doe Redux: Dismantling the BAIPA Myth Pediatrics 123(4): 1088(2009) Enforcement of the BIPA Would:

Recent Georgia State Law Review article “[R]esuscitation…must be initiated…if a heartbeat is detected or it otherwise shows signs of life.” “Thus, an extremely premature infant born with no hopes of long-term viability must, according to BAIPA, be administered maximal life-sustaining treatment, likely resulting in a bad death or a severely disabled life.” Avoiding Baby Doe Redux: Dismantling the BAIPA Myth BAIPA: Legal Community Confusion 25 Ga. St. U. L. Rev

Origin - Greek mythos, story An unproved or false collective belief that is used to justify a social institution Myths surrounding BAIPA? Avoiding Baby Doe Redux: Dismantling the BAIPA Myth The Origin and Meaning of Myth

The BAIPA provides a Federal definition of live birth Most States already have this No evidence that States with live birth statutes are more aggressive at resuscitating marginally viable newborns ALL States require the reporting of live births of any weight or gestation Avoiding Baby Doe Redux: Dismantling the BAIPA Myth Dismantling the Myth - Statutory

Avoiding Baby Doe Redux: Dismantling the BAIPA Myth Dismantling the Myth - Constitutional Parental have constitutionally protected rights to make decisions for their children

“Decision-making involving the health care of young patients should flow from responsibility shared by physicians and parents. - AAP Committee on Bioethics Avoiding Baby Doe Redux: Dismantling the BAIPA Myth Dismantling the Myth - Ethical

Avoiding Baby Doe Redux: Dismantling the BAIPA Myth Conclusion Public Domain Photo by Matthew Jackson