How these Catholic ministries help parents choose life for babies with disabilities

(OSV News) -- Mary Kellett still remembers the moment one doctor told her to let her baby die. She was in the hospital after giving birth to her son, Peter, at 33 weeks of pregnancy. He weighed three pounds and two ounces -- less than a half gallon of milk.

"I want to talk to you as a mother," the doctor, a woman Kellett had never met before, said. "If you want to be a good mother, you have to let Peter go."

Before Peter was born, Kellett knew doctors suspected he had Trisomy 18, also known as Edwards syndrome. Her doctor had told her most parents expecting babies with this rare genetic condition seek abortion. He also told her Peter would be a burden and never contribute to society. If Peter made it to birth, he wouldn't live beyond two weeks.

"He's going to die, he's going to die," Kellett remembered doctors telling her. "Well he grew -- and he was a great gift for our family for the six-and-a-half years he lived."

Today, Kellett serves parents in similar situations as the founder and director of Prenatal Partners for Life. PPFL is a group of parents, medical professionals, legal professionals and clergy dedicated to helping expectant or new parents of children with disabilities. Kellett and leaders of other life-affirming Catholic ministries that serve parents of unborn children diagnosed with disabilities, spoke with OSV News ahead of the International Day of Persons with Disabilities on Dec. 3.

First and foremost, these leaders want parents to know: You are not alone. Their groups are ready and waiting to accompany families, whether they are Catholic or not. These leaders also want parents to know that their child -- no matter how he or she might be different -- is made in the image and likeness of God: Their child has inherent dignity and worth.

Like Kellett, many of these experts drew from personal experience. Tracy Winsor of Be Not Afraid, or BNA, lost two sons, Thomas and Gabriel, in miscarriage. Caroline Aragón, a board-certified genetic counselor with MyCatholicDoctor, has a sister with Turner syndrome, a genetic condition. Whitney Whitmore of Lily of the Valley Catholic Ministry lost her son, Colin, at 34 weeks after learning he had a chromosome 17 deletion. Leah Sonnick with the Archdiocese of Newark's My Beautiful One ministry in New Jersey, was told that her daughter, Loretta Mae, had a condition incompatible with life. She lived for eight months with Trisomy 18.

"Let love lead you. Don't let fear lead you," Kellett said she wanted parents to know. "You're not alone -- and there are people who can walk with you."

Parish-centered care for babies with disabilities

Catholic parishes nationwide are learning to help parents expecting or raising children with disabilities through Walking with Moms in Need, a parish-based initiative by the U.S. Conference of Catholic Bishops that serves vulnerable pregnant and parenting women.

"Our Walking with Moms in Need inventory -- that we ask parishes to fill out as part of Walking with Moms in Need -- does include groups that support families facing a prenatal diagnosis or support for families of children with a disability," said Kat Talalas, assistant director for pro-life communications at the USCCB's Secretariat of Pro-Life Activities.

At least one third of U.S. dioceses participate in Walking with Moms in Need and have parishes that participate, Talalas said, adding that the number is likely much higher. Each of these parishes is encouraged to complete an inventory of local resources. Talalas said the USCCB asks that the inventory include groups such as PPFL and BNA.

Based in North Carolina, Be Not Afraid began in 2008 as a nonprofit dedicated to supporting parents carrying to term following a prenatal diagnosis. Today, BNA focuses on training pro-life and Catholic organizations nationwide, including dioceses and archdioceses, and referring parents to them.

"We're really focused on making certain they have all the information they need to make the best decisions for themselves and for the baby God gave them," Winsor, co-founder and training and service development director at BNA, said of parents.

Creating a new kind of network

According to numbers cited by BNA, 80% of parents who are told their unborn child has a severe congenital anomaly seek abortion. At the same time, 80% of parents facing a prenatal diagnosis choose to carry to term when they are offered comprehensive, life-affirming care.

Already, BNA has provided training for major organizations including the National Catholic Bioethics Center, Sidewalk Advocates for Life and Heartbeat International, which worked with BNA to create PrenatalDiagnosis.org, another resource for parents facing a prenatal diagnosis.

Among the dioceses trained by BNA, Winsor highlighted the Archdiocese of Newark.

My Beautiful One, an Archdiocese of Newark ministry that accompanies parents who choose life after receiving a prenatal diagnosis, has served 28 families since August 2023.

Leah Sonnick and Kathleen Ranft, volunteer parent care coordinators who received BNA training, spoke with OSV News together with Anne Masters, director of the archdiocese's Office for Pastoral Ministry with Persons with Disabilities, which houses My Beautiful One.

Among other things, My Beautiful One helps with spiritual support, understanding decision points, writing birth and newborn care plans, memory making and, if necessary, funeral planning and grief support.

They strive to be Christ to parents, Sonnick said, and draw from their training to provide a trauma-informed response, beginning by listening.

"We're focused on the parents. We're focused on the baby," she said. "We're focused on the life that is in front of us. And that we're going to welcome this baby, stabilize and evaluate, and then see what the possibilities are."

Sonnick and Ranft also spoke about affirming and empowering parents in their role as parents. Their support helps parents identify what is important to discuss at medical appointments. They advocate for parents to make decisions with fully-informed consent.

Access to life-affirming medical care for babies with disabilities

Other groups and medical professionals in this area also have connections to BNA, including Aragón, a genetic counselor, and Dr. Robin Pierucci, a board-certified neonatologist and pediatrician. They have helped parents facing an adverse diagnosis for a child through BNA's medical advisory council.

Aragón, who serves parents through MyCatholicDoctor, spoke about collaborating with Dr. Pierucci, who is also a provider through MyCatholic Doctor and recently began Navigating Fetal Concerns, a group trained in BNA's model of care and dedicated to providing "compassionate, medically-accurate support to families facing fetal diagnoses."

"From the genetics side, many times parents who receive a high risk genetic screen during pregnancy are directed to choose abortion," Aragón said in written comments to OSV News. "What is so important about having these fetal concerns medical resources for Catholic parents ... is that parents have access to trauma-informed, life-affirming clinical care for their pregnancy and post birth."

Walking with parents in prayer

As co-founder and executive director of Lilly of the Valley Catholic Ministry, Whitney Whitmore also stressed the importance of walking with parents in prayer. Her ministry focuses on prayer while serving families experiencing a difficult prenatal diagnosis as well as families struggling with infertility, postnatal medical challenges, or the loss of an unborn baby or infant.

"Even though it's surrounded by so much suffering, there's just so much beauty in our faith when we walk together as one body of Christ," she said. "We're the hands and feet of Christ. That's what we're called to do."

Whitmore, whose prenatal diagnosis led her to convert to Catholicism, saw a need for the church to do more. Among other things, LOTV sends families prayer care packages that include handwritten notes and even third-class relics of St. Gianna Berretta Molla. Since 2022, they have delivered more than 1,000 prayer packages.

LOTV also holds monthly prayer gatherings and provides grief support. Online, LOTV invites people to submit prayer requests, serve as prayer ambassadors and parish liaisons, and even venerate a relic of St. Gianna at St. Raphael Parish in Raleigh, North Carolina, where LOTV is based. They also hold a yearly retreat and other events.

Next year, they plan to expand.

"We're creating an outgrowth of the ministry and readjusting our mission to include education, awareness of the community and clergy," Whitmore said.

People can also request prayers from PPFL, which began in 2006. Kellett said that her ministry based in Maple Grove, Minnesota, seeks to "provide life-affirming support to families who experience an unexpected diagnosis or health issues for their child, either before or after birth."

"We remind them that their baby is still their baby, regardless of any diagnosis or health issue going on -- and their baby is not the diagnosis," she said. "That's just something their baby has."

Babies with disabilities have much to teach

Online, PPFL shares stories of other families and resources for families and friends, siblings, priests and medical professionals. They offer gifts for expectant parents and care packages for families struggling with loss. PPFL also lists resources for prenatal support, post-abortion support, grief support and more.

Kellett listed additional services, from helping families financially with their grant program to throwing "prayer showers," or baby showers anchored in prayer.

Her work today, she said, is in response to her own little boy, Peter.

"These kids teach us so much just by being alive," Kellett said. "He never spoke a word, but he taught us an awful lot about unconditional love and compassion and hope and how faithful God is."

"I really think (God) blesses us with these children to help us become better people," she added. "I call them 'teachers of our souls,' these little ones. That's what they do. They teach us."