This is Issue 109 of the On Point Series.
Meet Nora
If you met Nora Rose, you would see a happy, adorable little girl who loves to smile, laugh, and play.[1] In addition to her joy, you would be able to spot her rare genetic disorder trisomy 13, a disorder for which median survival is reported in days or weeks after birth. Nora defied expectations, however, and celebrated her eighth birthday in October 2024. Her strength and smile are more than a gift – they are an inspiration to everyone fortunate enough to know her.
Trisomy 13, also known as “Patau Syndrome,” is a rare genetic condition that leads to severe physical and mental abnormalities.[2] Nora’s parents, Katie and Jacob Malone, learned of her diagnosis during Katie’s pregnancy – a moment that profoundly altered their journey as parents.[3] Statistically, trisomy 13 affects about one in every 10,000 to 20,000 live births.[4] These figures, however, do not reflect the countless lives lost before birth due to miscarriage or induced abortions.
When physicians delivered the devastating news of Nora’s trisomy 13 diagnosis to her expecting parents, the focus was not on addressing Nora’s unique medical needs. Instead, Katie and Jacob were urged to consider abortion.[5] They were repeatedly reminded of the grim prognosis and told that most babies with trisomy 13 rarely survive beyond birth. Yet, with staunch resolve, Katie and Jacob refused to end their daughter’s life. They chose to give Nora the chance to experience the beauty that life had to offer her. Above all, they wanted to meet their daughter – to hold her in their arms, to love her unconditionally, and to cherish every moment they could. Their first and most heartfelt hope was simply to bring Nora home.
Reflecting on their journey, Jacob shared, “We had agreed that we were going to fight for our daughter.” True to their word, Katie and Jacob consistently prioritized Nora’s needs and desires above their own. They made a commitment “to fight for it if it feels like she wants us to fight for it.”[6] With faithful determination, they decided that Nora deserved an opportunity at life and let her personal cues guide each decision along the way. Their boundless love for Nora and firm devotion to honoring her unique path shaped every choice.
Nora was born at 1:45 a.m. on October 14, 2016, tipping the scales at 6 pounds and measuring 19 inches in length.[7] Her parents, steadfast in their commitment, were unwavering in their attention to Nora’s unique needs and fought tirelessly until they were met. Their relentless advocacy paid off, as Nora was equipped with a feeding tube and successfully underwent open-heart surgery. Nora’s reactions were a source of joy – her wide smile lit up the room, her coos filled her parents’ hearts with hope, and her cries signaled her unyielding will to live. She responded to the love her parents showed her through their hugs, playful gestures, and tender kisses, with unmistakable happiness.
To her family’s delight, Nora was able to come home, where she has been loved ever since. In an online interview, Katie shared that Nora “likes to play with toys, and likes sunshine, and likes to be silly and be tickled … She is more [similar] to [other children] than they probably realize.” And her father, brimming with pride, is certain that “[s]he is the most beautiful girl that has ever lived.”[8]
Challenging Preconceptions
Nora’s story reminds us that the value of a life isn’t measured in years but in moments of connection and love. While her journey brings hope to parents facing prenatal diagnoses, it also challenges the notion that trisomy 13 and 18 are “incompatible with life.” While these conditions are rare, many children diagnosed prenatally defy expectations and live well into their teenage years and beyond. Stories like Nora’s inspire us to reevaluate outdated preconceptions of fetal conditions and embrace the beauty and potential within every child’s life, however brief or long.[9]
Research underscores that children with trisomy 13 and 18 can achieve significantly extended lifetimes when their unique needs are met with medically tailored treatments. An Ontario-based study revealed that over 10% of children with these conditions lived for at least 10 years. Furthermore, the majority of patients in this study who reached the six-month milestone went on to live for a decade or longer.[10] A separate Japanese study reported a recent increase in one-year survival and discharge to home rates in trisomy 18 patients, aligning with increasing rates of surgical intervention.[11] These findings illustrate the impact of a patient-centered holistic approach to care, which responds to each child’s unique needs with consideration of their strengths and tolerances.
A commentary on the Ontario study raised poignant concerns about “how predictions of lethality become self-fulfilling prophecies.”[12] Extending life for these patients requires a nuanced perspective, one that integrates compassionate medical care, an understanding of the child’s individual needs, and the tireless advocacy of their families. By adopting a patient-centered approach to care, we can interrupt these self-perpetuating cycles of negative outcomes, honoring the beauty and dignity of each patient by monitoring and responding to their needs.
Who Defines a Life Worth Living?
In addition to challenging lethal language that often accompanies these diagnoses, it is equally essential to question the quality-of-life judgments made on these children’s behalf. Too often, the value of life is assessed through a narrow lens—one that privileges being able-bodied and neurological uniformity.
Critics may argue that Nora’s moments of loving connection are misinterpreted. Yet, countless lived examples show that these children often laugh, smile, and respond to their families with joy just like Nora does. Despite the persistent tendency to evaluate a life’s value solely based upon neurocognitive ability, these children reveal a profound ability to bring happiness and meaning to their families.
While neurocognitive challenges are inevitable, it is not unusual for children with trisomy 13 and 18 to achieve developmental milestones over time. Many learn to play with toys or respond to stimuli with smiles and laughter, and 45% of survivors between ages three and ten in a 2012 study uttered the cherished words “mama” and/or “papa.”[13],[14],[15] These moments of growth are a testament to their capacity for connection. Unsurprisingly, in the same 2012 study, 98% of parents whose child lived more than three months self-reported that their lives were enriched by these precious children, and 99% of parents of children still living at the time of the study “described surviving children as happy.”[16]
These findings prompt us to reconsider how society views babies diagnosed prenatally. Are we imposing a subjective and inaccurate perspective of “quality of life”? Could the use of fatalistic phrases such as “incompatible with life” or “fatal fetal anomaly” create self-fulfilling prophecies, coercively influencing parents’ decisions?[17] The language used by medical professionals carries significant implications, shaping perceptions and choices in ways that may not reflect the child’s true potential.[18] It is essential to challenge preconceived notions about unborn children and infants with fetal conditions and instead provide expecting parents with a realistic portrayal of their child’s unique circumstances. This step is crucial in empowering parents to respond to their child’s needs and make informed decisions that best serve their family.
The Space Between Prediction and Reality
Every potentially life-threatening fetal condition is as unique as the invaluable child it affects, and corresponding care plans must reflect this diversity of needs, possibilities, and goals. Some infants receiving positive prenatal test results may experience minimal complications due to the inaccuracy of the prenatal prediction and thus require little support post-birth. A report in The New York Times (NYT), for example, revealed that, when it comes to the non-diagnostic screening test for the rare Prader-Willi syndrome, “positive results are incorrect more than 90 percent of the time.” The NYT also averaged how often the positive results of five different prenatal screening tests are mistaken,[19] finding that these tests’ positive results are wrong about 85% of the time on average. These results underscore the importance of approaching prenatal screening and predictions with caution.[20]
It is not uncommon for parents to give birth, expecting their baby won’t survive to be discharged from the hospital, only to find themselves hastily preparing their nursery to welcome the newest member of the family home. On the other hand, some infants face more severe complications that exceed the capabilities of current medical interventions to sustain life. In such cases, care must never be withheld but refocused on comfort and compassion. Aggressive pain and symptom management are essential clinical interventions and a cornerstone of comprehensive care plans.
Between these extremes lies a spectrum of medically indicated treatments tailored to each unique child’s needs. Regardless of severity or life expectancy, all children with prenatal diagnoses deserve a chance—however brief—to experience love and care.
Medical Advances for Treating Babies Diagnosed with Life-Threatening Conditions Prenatally
In the face of diagnostic uncertainty and complex prognoses, medical innovation continues to expand what is possible. Advances in prenatal and fetal therapies have opened new avenues of care, offering a possibility of hope to some families whose children face serious conditions before birth. Once considered untreatable or inevitably fatal, certain diagnoses may now be met with interventions that could significantly improve outcomes.
Prenatal treatment involves performing surgical procedures or other interventions in utero (while the baby is still in the womb) with the aim of improving the baby’s chances of survival and quality of life. For instance, babies diagnosed with congenital heart defects may benefit from fetal cardiac interventions, which can correct or lessen the severity of the defect before birth. Other examples of prenatal treatment include the placement of fetal shunts, laser therapy, and blood transfusions to address complications.
These revolutionary prenatal treatments have emerged as a tangible source of hope for many babies who receive a prenatal diagnosis. It is not a miracle solution for everyone, nor an easy choice for anyone, yet there are many fetal therapy success stories that demonstrate remarkable outcomes. When such interventions are both medically appropriate and accessible, they offer another path for families to consider. The following two stories illustrate the profound impact these advances can have.
Simarjeet Kaur and her Twin Girls
Simarjeet Kaur was eagerly awaiting the arrival of her healthy identical twin girls when she received devastating news: her twins had developed twin-to-twin transfusion syndrome (TTTS).[21],[22]
TTTS occurs when the shared placenta causes uneven blood flow between twins. One twin receives too much blood, risking heart failure, while the other suffers from dehydration and malnourishment. If untreated, this imbalance can result in serious outcomes, including growth restriction and death for both twins.[23]
Determined to give her daughters the best chance at life, Simarjeet consented to fetoscopic laser surgery. This innovative procedure closed the blood vessels connecting the twins’ circulatory systems, balancing their fluid levels while they were still in the womb.[24] The procedure was successful and Simarjeet delivered healthy, beautiful twin daughters.
Before medical innovations led to treatments, TTTS was associated with high morbidity and perinatal mortality. However, modern medical advancements have transformed possibilities, bringing hope to families facing this condition. The sight of Simarjeet’s identical, smiling twin girls serves as a poignant reminder of what can be achieved when we strive to redefine outcomes for life-threatening disorders.
Denver Coleman
Denver Coleman is another living testament to the groundbreaking potential of modern medicine. Diagnosed prenatally with vein of Galen malformation (VOGM) —a rare and often fatal condition[25]—her parents, Kenyatta and Derek, faced heartbreaking uncertainty as they prepared to welcome their baby girl. VOGM involves an abnormal connection between arteries and veins, causing high-pressure blood flow into the vein of Galen, a critical vein in the brain. This condition can result in life-threatening complications, including heart failure and brain damage.
Given the high likelihood that Denver’s condition would result in complications after birth, she was eligible for the first American clinical trial of in utero brain surgery for VOGM. Known clinically as ultrasound-guided transuterine fetal cerebral embolization, this procedure was a bold and trailblazing intervention performed while Denver was still in the womb. On March 17, 2023, Denver was welcomed into the world weighing 4 pounds and 1 ounce—a joyous moment following her surgery. [26] Today, she is a thriving, happy baby girl. [27], [28]
Reporting on Denver’s case study, the research team describes this therapy as a “paradigm shift” towards preventing, rather than managing, the clinical complexity often associated with VOGM after birth. Denver’s story reflects one extraordinary instance where medical innovation, clinical opportunity, and circumstances aligned to allow for a pioneering intervention. Her smiles and milestones offer a glimpse into what is possible when science and compassion meet at the right moment.
At the same time, Denver’s story reminds us that not all families will have the same opportunities, or face the same decisions. Access to emerging treatments depends on many factors, and not every child is eligible for intervention. But medical treatment is never the sole measure of a child’s worth. Whether through surgery, hospice, or simply holding a child close for the time they’re given, every family deserves accompaniment in exploring the choices that best reflect their love, values, and hopes.
The Beautiful Accompaniment of Perinatal Hospice
As medical advances offer new possibilities for treating some life-threatening conditions in utero, it is equally important to recognize that extending life is not the only meaningful goal of care. For many families, the most compassionate path may involve shifting from aggressive treatment to an equally active focus on comfort, presence, and love. We must remember that “[t]he task of medicine is to care even when it cannot cure.”[29]
Perinatal hospice provides a model of accompaniment when a cure is not possible or when the burdens of treatment outweigh the potential benefits. It offers families space to welcome and honor their child’s life, no matter how brief. Ava’s story is one example of such courageous accompaniment.
Marybeth Lobato and her husband walked this path with their daughter, Ava Brienne, who was diagnosed with a rare condition called bilateral multicystic dysplastic kidneys. Fully aware of the limitations of medical interventions, they committed to loving Ava for as long as they could, even if that time was fleeting outside of the womb. They chose to honor their daughter’s life by allowing her a peaceful, natural passing.[30]
Despite being a day clouded with fear and anxiety, Ava Brienne Lobato’s birthday on August 7 was the greatest day of Marybeth’s life. Reflecting on her experience, Marybeth shares:
We were told that she would never cry, and likely survive for less than an hour. Ava came out screaming, and gave us the most beautiful two hours of our lives. The second I heard her cry, I felt a love and a sense of pride unlike anything that I had ever felt before. She died peacefully in my arms, listening to my heartbeat, a sound that she knew well. Her daddy and I got to love on her and tell her how proud of her we were, and how loved she was, and always will be. We each got to hold her, and kiss her, and hold her tiny hands.[31]
Marybeth’s story is one of extraordinary strength and resilience in the face of unspeakable pain. It is also a story of unconditional love and compassion for a dear child who deeply impacted her parents’ lives in her brief time after birth. Ava’s life, though short, reminds us of the inherent value and beauty of every human life, no matter the length.
Many families have stories like Marybeth’s. A 2018 study found that 97.5% of parents do not regret carrying their baby with a life-threatening prenatal diagnosis to term.[32] Another study focusing on families who experienced the loss of their child due to anencephaly, either before or after birth, found that mothers who carried their baby to term “reported significantly less despair, avoidance and depression than women who terminated.” This same study wondered if there is a psychological benefit when these babies are carried to term.[33]
These findings reinforce a profound truth: choosing to end a pregnancy often poses serious risks to a mother’s mental health.[34] Conversely, embracing the precious, albeit brief, time they have with their child may bring a sense of peace, pride, and purpose.
How We Can Support Families Facing a Prenatal Diagnosis
The stories shared here showcase the extraordinary impact of compassionate care for children diagnosed with fetal conditions prenatally. Each story—from Nora’s joyful milestones to Simarjeet’s twins overcoming TTTS, Denver’s in utero brain surgery, and Ava’s treasured moments with her family—illustrates the potential of tailored, patient-centered care. These journeys remind us that each family and child deserve more than deterministic labels; they deserve personalized information and care that honors their unique path.[35]
As neonatologist and Charlotte Lozier Institute associate scholar Dr. Robin Pierucci emphasizes, no diagnosis can eclipse the foundational medical determination that “it is a baby!”[36] This truth must guide all medical care and advocacy. Each child, like Nora, Simarjeet’s twins, Denver, and Ava, deserves access to the best care that modern medicine can offer. Whether that care involves life-saving interventions, perinatal palliative care, or hospice, families should be empowered to explore life-affirming paths which respond to the child’s unique condition and circumstances.
Advocate for Access to Life-Giving Care
From the moment families hear the words “it is a baby!” through every stage of their journey, advocacy for life-giving care provides hope and support. Nora’s parents fought tirelessly to ensure access to life-giving care that allowed her to defy expectations. Today, her infectious laughter and sunny days playing outside stand as a testament to what patient-centered care can achieve. Their journey began with access to accurate information, which empowered them to navigate the potential paths forward and make informed decisions for their daughter.
Simarjeet Kaur’s story highlights the power of access to advanced fetal therapy. By undergoing fetoscopic laser surgery, her twin daughters were given a chance to overcome TTTS, and today they are thriving examples of the transformative potential of such care. Organizations like Be Not Afraid and resources like PrenatalDiagnosis.org play a pivotal role in bridging the access gap for families. By providing critical resources, counseling, and personalized guidance, these entities address both systemic and individual challenges, ensuring that families like the Malones and the Kaurs can access the best care available to honor their child’s life and potential.[37], [38]
Advocate for Perinatal Palliative Care
Families like Marybeth’s and children like Ava remind us that life is beautiful, even when its duration is fleeting. Perinatal hospice enabled Marybeth to hold Ava, hear her cry, and experience two hours filled with immeasurable love and pride—a precious gift that transcends the bounds of time. Similarly, Nora’s parents balanced medical interventions with Nora’s personal cues, reflecting the patient-centered focus of perinatal palliative care.
As the American Academy of Pediatrics clarifies, palliative care is not limited to hospice care; it embodies quality of life and emotional support for children and their families.[39] It can complement curative or life-prolonging treatments or serve as the primary focus when such treatments are not feasible or desired.[40],[41] For families like the Lobatos and Malones, perinatal palliative care ensured that their babies’ dignity and comfort were honored, even in moments of profound challenge.
Advocate for Research that Promotes Life
Denver’s story is a shining example of the impact of research and innovation. The “paradigm shift” of her pioneering therapy represents the hope that new interventions can bring to families. Similarly, for Nora, advancements in medical care enabled her to celebrate milestones many thought impossible, from graduating kindergarten to sharing sunny moments with her parents.[42] Advocacy for life-focused research expands possibilities for families navigating prenatal diagnoses and offers hope for brighter futures.
Advocate for Life
At the heart of every story shared is the irrefutable truth that life is a gift. Whether it is Denver’s smiles after her groundbreaking surgery or Simarjeet’s twins playing together, these children remind us that the beauty of life is not measured by its length but by the love and joy it brings.
Advocating for life means standing alongside families like the Malones, Lobatos, Colemans, and Kaurs, offering unwavering support and hope. Together, we can ensure that every family receives the care, compassion, and respect they need to honor their baby’s unique journey.
Paul Wagle, M.H.A., M.A., CPE is an associate scholar with the Charlotte Lozier Institute.
[1] “Nora Rose’s Journey,” Facebook, accessed May 22, 2024, https://www.facebook.com/norarosejourney.
[2] “Trisomy 13,” National Center for Advancing Translational Sciences, February 2024, https://rarediseases.info.nih.gov/diseases/7341/trisomy-13.
[3] Marla Jones, “The Journey of Nora Rose,” Southern Torch, February 3, 2017, https://southerntorch.com/community/27011-2/.
[4] “Trisomy 13 (Patau Syndrome),” Cleveland Clinic, January 25, 2023, https://my.clevelandclinic.org/health/diseases/24647-trisomy-13-patau-syndrome.
[5] Hannah Raughton, “Beating the Odds: Nora Rose Turns 2 Years Old in October,” The Times-Journal, August 13, 2018, https://times-journal.com/news/fort_payne/article_969613e0-9f37-11e8-8df9-8ba03f52ab0d.html.
[6] Special Books by Special Kids, “Living with Trisomy 13 (An Extra 13th Chromosome),” YouTube, February 6, 2020, https://www.youtube.com/watch?v=5eSP-cvc1Do.
[7] Jones, “The Journey of Nora Rose.”
[8] Special Books by Special Kids, “Living with Trisomy 13 (An Extra 13th Chromosome).”
[9] Charlotte Lozier Institute, “Five Facts About ‘Life-Limiting’ Fetal Conditions,” Charlotte Lozier Institute, February 15, 2024, https://lozierinstitute.org/five-facts-about-life-limiting-fetal-conditions/.
[10] Katherine E. Nelson et al., “Survival and Surgical Interventions for Children With Trisomy 13 and 18,” JAMA 316, no. 4 (July 26, 2016): 420–28, https://doi.org/10.1001/jama.2016.9819.
[11] Shoko Tamaki, Sota Iwatani, Ayako Izumi, Kentaro Hirayama, Dai Kataoka, Shohei Ohyama, Toshihiko Ikuta, et al. “Improving Survival in Patients with Trisomy 18.” American Journal of Medical Genetics Part A 188, no. 4 (April 2022): 1048–55. https://doi.org/10.1002/ajmg.a.62605.
[12] Lantos JD. “Trisomy 13 and 18—Treatment Decisions in a Stable Gray Zone,” JAMA. 2016;316(4):396–398. doi:10.1001/jama.2016.9470
[13] Baty, B. J. et al. (1994). “Natural history of trisomy 18 and trisomy 13: II. Psychomotor development,” American Journal of Medical Genetics, 49(2), 189-194.
[14] Nishi, E. et al. (2018). “Clinical courses of children with trisomy 13 receiving intensive neonatal and pediatric treatment,” American Journal of Medical Genetics Part A, 176(9), 1941-1949.
[15] Janvier, A., Farlow, B., & Wilfond, B. S. (2012). “The experience of families with children with trisomy 13 and 18 in social networks,” Pediatrics, 130(2), 293-298.
[16] Ibid.
[17] McCaffrey, M. J. (2024). “The Proper Catholic and Pro-Life Response to Life Limiting Anomalies: Moving Beyond Perinatal Hospice,” Ethics & Medics, 49(12).
[18] Moxey, A. et al. (2003). “Describing treatment effects to patients,” Journal of general internal medicine,” 18(11), 948–959.
[19] The five conditions reported on were DiGeorge syndrome, 1p36 deletion, Cri-du-chat syndrome, Wolf-Hirschhorn syndrome, and Prader-Willi and Angelman syndromes.
[20] Kliff, S., & Bhatia, A. (2022). “When they warn of rare disorders, these prenatal tests are usually wrong.” New York Times.
[21] “Diagnosed with TTTS,” The Twin to Twin Transfusion Syndrome Foundation, accessed May 22, 2024, https://tttsfoundation.org/help-during-pregnancy/diagnosed-with-ttts/.
[22] “Twin to Twin Transfusion Syndrome (TTTS): Simarjeet’s Story,” Johns Hopkins Medicine, accessed May 22, 2024, https://www.hopkinsmedicine.org/health/conditions-and-diseases/twintotwin-transfusion-syndrome-ttts/patient-story-simarjeet.
[23] “Twin-To-Twin Transfusion Syndrome (TTTS),” UCSF Benioff Children’s Hospitals, accessed May 22, 2024, https://www.ucsfbenioffchildrens.org/conditions/twin-to-twin-transfusion-syndrome-ttts.
[24] “Fetoscopic Laser Surgery,” The Johns Hopkins Center for Fetal Therapy, accessed May 22, 2024, https://www.hopkinsmedicine.org/gynecology-obstetrics/specialty-areas/fetal-therapy/fetal-interventions-procedures/fetoscopic-laser-surgery.
[25] Darren B. Orbach et al., “Transuterine Ultrasound-Guided Fetal Embolization of Vein of Galen Malformation, Eliminating Postnatal Pathophysiology,” Stroke 54, no. 6 (June 2023): e231–32, https://doi.org/10.1161/STROKEAHA.123.043421.
[26] Nadia Kounang and Amanda Sealy, “Doctors Performed Brain Surgery on a Baby before She Was Born and Now She’s Thriving,” CNN, May 4, 2023, https://www.cnn.com/2023/05/04/health/brain-surgery-in-utero/index.html.
[27] WBRZ, “Parents Give Back to Community to Celebrate One Year after Infant’s Successful in-Utero Surgery,” YouTube, March 15, 2024, https://www.youtube.com/watch?v=pg01AQiWx5Y.
[28] Mansur Shaheen, “Girl given World-First Brain Surgery inside WOMB Is Thriving,” Mail Online, May 4, 2023, https://www.dailymail.co.uk/health/article-12047131/Family-girl-given-world-brain-surgery-inside-WOMB-say-shes-thriving.html.
[29] “Ethical and Religious Directives for Catholic Health Care Services, Sixth Edition” (United States Conference of Catholic Bishops, June 2018), https://www.usccb.org/resources/ethical-religious-directives-catholic-health-service-sixth-edition-2016-06_0.pdf.
[30] “Prenatal Life Limiting Diagnosis: Bilateral Multicystic Dysplastic Kidneys | Q&A with Marybeth Lobato,” The Morning, September 16, 2019, https://www.themorning.com/blog/true-story-marybeth-lobato.
[31] Ibid.
[32] Charlotte Wool, Rana Limbo, and Erin M. Denny-Koelsch, “‘I Would Do It All Over Again’: Cherishing Time and the Absence of Regret in Continuing a Pregnancy after a Life-Limiting Diagnosis,” The Journal of Clinical Ethics 29, no. 3 (2018): 227–36.
[33] Heidi Cope et al., “Pregnancy Continuation and Organizational Religious Activity Following Prenatal Diagnosis of a Lethal Fetal Defect Are Associated with Improved Psychological Outcome,” Prenatal Diagnosis 35, no. 8 (August 2015): 761–68, https://doi.org/10.1002/pd.4603.
[34] James Studnicki et al., “A Cohort Study of Mental Health Services Utilization Following a First Pregnancy Abortion or Birth,” International Journal of Women’s Health 15 (June 15, 2023): 955–63, https://doi.org/10.2147/IJWH.S410798; Nora Sullivan and Eoghan de Faoite. “Psychological Impact of Abortion due to Fetal Anomaly: A Review of Published Research.” Issues Law Med. 32, no. 1 (Spring 2017):19-30, PMID: 29108161.
[35] See, for example, “If You Have a Prenatal Diagnosis,” Be Not Afraid, 2024, accessed July 25, 2025, https://benotafraid.net/wp-content/uploads/2024/03/Prental-Screening-Brochure-for-General-Distribution-May-2023-updates.pdf.
[36] Katie Yoder, “Perinatal Hospice and Palliative Care Offer Compassionate Alternatives to Abortion,” Our Sunday Visitor, January 2, 2024, https://www.oursundayvisitor.com/perinatal-hospice-and-palliative-care-offers-alternative-to-abortion-experts-say/.
[37] “About,” Be Not Afraid, accessed May 21, 2024, https://benotafraid.net/about/.
[38] “About Us,” PrenatalDiagnosis.org, accessed April 2, 2025, https://prenataldiagnosis.org/about-us.
[39] Navaneethan, H. (2024). Pediatric Palliative Care. Point-of-Care Quick Reference, https://publications.aap.org/pediatriccare/article-abstract/doi/10.1542/aap.ppcqr.396508/197056/Pediatric-Palliative-Care?redirectedFrom=fulltext.
[40] Cara Buskmiller et al., “Patient-Centered Perinatal Palliative Care: Family Birth Plans, Outcomes, and Resource Utilization in a Diverse Cohort,” American Journal of Obstetrics & Gynecology MFM 4, no. 6 (November 2022), https://doi.org/10.1016/j.ajogmf.2022.100725.
[41] “Perinatal Palliative Care and Bereavement,” Children’s Hospital of Philadelphia, https://www.chop.edu/services/perinatal-palliative-care-and-bereavement.
[42] “Nora Rose’s Journey,” Facebook, https://www.facebook.com/reel/823039409264550.
