The Power and Pain of Words - Journey of a Lifetime (JOL)

Is lethal language accurate or even appropriate in perinatal palliative care?

Should We Stop Calling Thanatophoric Dysplasia a Lethal Condition?

https://www.liebertpub.com/doi/full/10.1089/pmr.2020.0016

Long-term Outcomes of Children with Trisomy 13 and 18 After Congenital Heart Disease Interventions

https://www.annalsthoracicsurgery.org/article/S0003-4975(17)30375-2/fulltext

Nemours Children’s Study Demonstrates Babies Prenatally Diagnosed With Lethal OI May Survive With Medical Interventions

https://nemours.mediaroom.com/CarrollOIOutcomes

Fatally Flawed? A Review and Ethical Analysis of Lethal Congenital Malformations

https://www.researchgate.net/publication/230563783_Fatally_Flawed_A_Review_and_Ethical_Analysis_of_Lethal_Congenital_Malformations

Guidance for Caring For Infants and Children With Trisomy 13 and Trisomy 18: Clinical Report

https://publications.aap.org/pediatrics/article/156/2/e2025072719/202649/Guidance-for-Caring-for-Infants-and-Children-With?autologincheck=redirected

Parental Hopes, Interventions, and Survival of Neonates with Trisomy 13 and Trisomy 18

https://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31526

Listen to Dr. McCaffrey speak on how he came to learn that many of the Trisomy diagnoses are not “lethal”:

DISCLAIMERS AND TERMS OF USE

Journey of a Lifetime (JOL) does not provide any medical care or treatment (e.g. prenatal or postpartum medical care; high risk obstetrics or maternal fetal medicine; mental, emotional, or behavioral health; does not prescribe, or refer for birth control/contraceptives or devices, remove IUDs; provide fertility testing or treatment for infertility; replacement or gender reassignment hormone therapy; does not provide vaccinations or immunizations; does not provide prenatal or genetic testing; and does not perform or refer for abortion services. This website is not intended to be direct medical, legal, or ethical advice for your specific situation. Please contact your physician, attorney, or clergy for additional help. If this is a medical emergency, please dial 911 or go to the nearest emergency room immediately. Journey of a Lifetime (JOL) accepts no liability for the consequences of any actions taken on the basis of the information provided. Journey of a Lifetime (JOL) provides life-affirming trauma informed care - including, but not limited to educational, emotional, spiritual and tangible support, advocacy, chaplaincy, and pastoral care - for moms and families that have received a life-limiting or other adverse perinatal diagnosis.

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