Prenatal diagnosis: Ministry of accompaniment affirms life and offers peace to families

Studies show that when a couple receives a prenatal diagnosis that shows a disability, there’s an 80 percent chance the unborn baby will be aborted.

“The statistics reveal a bias against individuals with disabilities, which denies their human dignity, indicating an attitude that says they don’t deserve even to live,” said Anne Masters, the director of the Archdiocese of Newark Office for Pastoral Ministry with Persons with Dis- abilities.

“What if parents with a prenatal diagnosis were presented with options of accompaniment,” Masters continued. “There is a greater chance that mothers would bring their baby to term if they knew they were supported.”

In fact, according to statistics, couples who receive information about available help to cope with the diagnosis are 80 percent more likely to carry the baby to term.

Studies further indicate the age of mothers who choose abortion with a prenatal diagnosis tend to be older and more educated. Whereas without prenatal diagnosis, the mother is typically younger and less educated.

Catholic social teaching opposes all forms of abortion. The Church believes in respecting and protecting all human life from the moment of conception. It also recognizes the difficulty of receiving a prenatal diagnosis.

“Parents who receive a prenatal diagnosis of a life-threatening condition should receive the support they need to assure that their child will be baptized ‘without delay,’” the U.S. Conference of Catholic Bishops stated in its revised edition of “Guidelines for Celebration of the Sacraments with Persons with Disabilities.”

“Indeed, priests, deacons and other pastoral ministers should provide spiritual and emotional support to families who have received any difficult prenatal diagnosis and offer on-going support before and after the birth of a child, with special concern in the event of the death of a child.”

“Sometimes (parents’) fear takes over faith,” said Cheryl Riley, the director of the archdiocesan Respect Life Office. “This is a different type of unexpected pregnancy.”

One resource for couples is Be Not Afraid. The nonprofit organization is located in Charlotte, N.C., but serves families nationally and internationally. It provides comprehensive case management service and offers peer support at diagnosis, during pregnancy, at birth and during postpartum for up to one year.

“We believe that every baby is a gift, and we support parents not only in the advocating for basic care but also in obtaining the treatment they deem appropriate for their child after birth no matter the diagnosis,” the organization states on its website.

Be Not Afraid follows the ethical teaching of the Catholic Church but serves parents of all denominations.

Leah Sonnick, a parishioner at Our Lady of Mount Carmel in Ridgewood, serves as a peer support minister via phone and online forums for the non- profit. Her third child, Loretta Mae, was born with Trisomy 18, also called Edwards syndrome, which is a chromosomal condition that affects many parts of the body. Babies with this syndrome often have low birth weight and life-threatening defects in the organs.

“We were told by a neonatologist that Loretta would have a ‘grim and futile existence.’ He described her condition as ‘incompatible with life,’” recalled Sonnick. Loretta Mae was given two to three days or two to three months at most to live. “We were broken beyond belief. I subsequently learned that these painful terms are not medical terms, but rather reflect the view of some in the medical community who may be uncomfortable with the uncertainty of a particular diagnosis.”

After nine days in the NICU, the couple went home with Loretta Mae. She lived until she was eight months old. During those months, the baby surprised her parents with her capabilities.

“The doctors said she wouldn’t know us, but that wasn’t true,” Sonnick said. She reminisced about one time that she had been away overnight, and upon her return, Loretta Mae heard her mother’s voice and turned toward her and smiled— something doctors said she would never do.

“After an initial period of waiting for her to die, we started living with her,” she stated. “We lived like any family with young children. We went for walks to the park. We took our normal family vacation. We went to the grocery store, appointments and visited family and friends.”

Sonnick is, of course, grateful for the gift of Loretta Mae’s life and the time she had with her daughter. She now uses her experience to help other couples who are going through similar circumstances.

“Some parents are traumatized by a prenatal diagnosis,” she said. “Parents grieve after learning the news and are often expected to make a decision right away while in a state of grief, without an opportunity to research options available.”

If parents do decide to carry the baby to term, Sonnick explained, they often feel “isolated, ignored or judged by the medical community.”

Kathy Ranft has been a registered nurse for 40 years, working in NICU and pediatric homecare. She received her certification in health care ethics from the National Catholic Bioethics Center in Philadelphia. She explained that while there are many supportive doctors, it would be beneficial for medical professionals to become more aware of available resources for these prenatal diagnoses.

“There is a great need,” she said. “I think most important is awareness that needs to be out there for people so that we are able to assist parents who are in this situation.”

Masters added that informed consent is also important, that patients have knowledge of the difference between prenatal screening tests that determine the risk factor of an abnormality and tests that diagnose, and also about implications of what tests are evaluating and their accuracy rates.

Studies show many medical providers’ own inclinations support the biases against carrying the baby to term. However, there are signs this could be changing.

The statistics noting parents significantly decreased tendency to have an abortion when provided with support options was conducted by medical doctors. Intentional outreach to the medical community could be helpful to further this along, according to Masters.

Further, studies show mothers who choose to carry to term recover to baseline mental health more quickly than those who have an abortion, and there are no increased medical complications for the mother associated with carrying to term a baby with a prenatal diagnosis.

Be Not Afraid, which has helped more than 30 families in 2020, addresses the emotional and tangible support needed by families. Tangible support includes case management and a birth plan.

“It is remarkable to see the difference in care offered by some doctors when parents have a birth plan. It engenders compassion for families, and doctors are often more flexible when parents can articulate their needs,” Sonnick noted. “We ask that, at the very least, these babies are treated like any other baby at birth.”

Doctors’ definition of quality of life is subjective and vague, she stated, saying that it’s often synonymous with physical or mental impairments.

According to Masters, these forecasts about lives of suffering or being a burden are now being challenged within ethics discussions, noting both their lack of evidence and uninformed biases that ignore the experiences of individuals with disabilities and their families.

“Parents find comfort in the acknowledgment and support that recognizes their babies’ inherent dignity as children of God, made in His image and likeness regardless of their diagnosis,” Sonnick said.

For more information, visit www.benotafraid.net or www.ncbcenter.org.