Medical Professionals

In the immediacy of a prenatal diagnosis and when carrying to term, interactions between parents and their medical providers can be especially impactful. We hope the resources on this page improve your care of the parents with whom you work. If you have additional questions or comments that we could provide to the members of our Medical Advisory Council, please contact us.

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Journal Articles

The Portrayal of Down Syndrome in Prenatal Screening Information Pamphlets ...
Objective: To examine the information about Down syndrome (DS) provided to pregnant women in Canada through a content analysis of prenatal screening information pamphlets
Risk and uncertainty: Shifting decision making for aneuploidy screening to the first trimester of pr ...
Purpose: The clinical introduction of first trimester aneuploidy screening uniquely challenges the informed consent process for both patients and providers.
Supporting Women’s Autonomy in Prenatal Testing ...
Early and noninvasive fetal genetic sequencing is on the horizon. Such expanded prenatal testing could offer patients substantial benefits.
Systematic review of the literature: parental outcomes after diagnosis of fetal anomaly. ...
Advancing technology has made detecting fetal abnormalities in the first and second trimesters a reality.
Abnormal Prenatal Cell-free DNA Screening Results ...
cfDNA screening (also referred to as non-invasive prenatal testing, NIPT, or non-invasive prenatal screening, NIPS) is a screening test that utilizes bioinformatic algorithms and next generation sequencing of fragments of DNA in maternal serum to determine the probability of certain chromosome conditions in a pregnancy.
Oversold and misunderstood ...
Stacie Chapman’s heart skipped when she answered the phone at home and her doctor — rather than a nurse — was on the line. More worrisome was the doctor’s gentle tone as she asked, “Where are you?”
Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition ...
Twenty-eight newborns prenatally diagnosed with lethal anomalies were eligible for a pilot hospice program at Rockford Memorial Hospital (RMH). Comprehensive care in a comforting community setting was provided to the 75% of families who chose this option.
Survival of Children with Trisomy 13 and Trisomy 18: A Multi-State Population-Based Study ...
Trisomy 13 (T13) and trisomy 18 (T18) are among the most prevalent autosomal trisomies. Both are associated with a very high risk of mortality.
Perinatal management of trisomy 18: a survey of obstetricians in Australia, New Zealand and the UK ...
The objective of this study was to explore the attitudes of obstetricians in Australia, New Zealand and the UK towards prenatally diagnosed trisomy 18 (T18).
Health care professionals’ attitudes about pregnancy termination for different fetal anomalies ...
Health care professionals (HCPs) may be involved in counselling women after an antenatal diagnosis of various fetal anomalies. Many pregnant women consider termination of pregnancy (TOP) after antenatal diagnosis of various fetal anomalies.
The health-care experiences of families given the prenatal diagnosis of trisomy 18 ...
Objective: The objective of this study was to examine parent-reported experiences in the health care system after receiving the prenatal diagnosis of trisomy 18 and to identify factors that contribute to satisfaction with care.
Prenatal diagnosis of hypoplastic left heart syndrome: impact of counseling patterns on parental per ...
An online survey for parents of children with congenital heart disease (CHD) was developed to study parents' experiences at the time of diagnosis.
The Term “Incompatible with Life” is Incompatible with the Best Care ...
This past week, a new campaign was launched in Dublin, Ireland seeking to end the use of the term “incompatible with life” to describe unborn children prenatally diagnosed with life-limiting conditions.
Our children are not a diagnosis: The experience of parents who continue their pregnancy after a pre ...
Trisomy 13 and trisomy 18 (T13-18) are associated with high rates of perinatal death and with severe disability among survivors. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy.
Trisomy 18 and complex congenital heart disease: seeking the threshold benefit. ...
A prenatal diagnosis of ductal-dependent, complex congenital heart disease was made in a fetus with trisomy 18.
The Experience of Families With Children With Trisomy 13 and 18 in Social Networks ...
BACKGROUND: Children with trisomy 13 and trisomy 18 (T13-18) have low survival rates and survivors have significant disabilities. For these reasons, interventions are generally not recommended by providers.
Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18 ...
(Janvier, Farlow) - longer survival if no prenatal dx:
What If the Prenatal Diagnosis of a Lethal Anomaly Turns Out to Be Wrong? ...
(OI study):
Lethal Language, Lethal Decisions: ...
JSTOR
Fatally flawed? ...
A review and ethical analysis of lethal congenital malformations "The designation ‘lethal’ overlaps with the concept of ‘medical futility’. The term is used for a heterogenous group of conditions, and hinders clear communication and counselling."
Survival of Children with Trisomy 13 and Trisomy 18: ...
A Multi-State Population-Based Study:
Long-Term Outcomes of Children With Trisomy 13 and 18 ...
After Congenital Heart Disease Interventions:
Heart surgeries benefit babies T13 and T18 ...
Mortality and Resource Use Following Cardiac Interventions in Children with Trisomy 13 and Trisomy 18 and Congenital Heart Disease.
Better Prognosis in Newborns with Trisomy 13 Who Received Intensive Treatments: ...
A Retrospective Study of 16 Patients:
Prolonged unassisted survival in an infant with anencephaly: ...
NCBI
In what circumstances will a neonatologist decide a patient is not a resuscitation candidate? ...
(A minority (25%) responded ‘yes’ when asked if a unilateral DNAR order would be permissible based solely on neurological prognosis.)
Should newborns with T18 be considered as candidates for heart surgery or is T18 uniformly fatal? ...
ResearchGate

Insight from a Physician with First-Hand Experience

Dr. Stringfield is Medical Director of Choices Medical Clinic in Wichita, KS. Smiles abound throughout the pre-op room, but th... read more »

What do medical professionals say about BNA?

"I've been more than pleased with the experience I've had with Be Not Afraid and feel comfortable that patients I refer to this service are in the most caring hands."

Kathlyn Hanauer, MS, CGC, Genetic Counselor ~ Charlotte, NC

"It has been a privilege to work with Be Not Afraid. It is my heartfelt prayer that God will continue to bless this service and make it flourish."

Dr. Philip Dehoff, OB/GYN ~ Providence OB/GYN, Charlotte, NC

“The support offered by BNA is distinguished by their love and attention to details, and their deep compassion for the families served and the circumstances those families encounter. They are professional and profoundly understanding of the dynamics of these unique pregnancies."

Dr. John T. Bruchalski, OB/GYN, Chairman, Divine Mercy Care, Founder, Tepeyac Family Center

If You Have a Pulse...

Baby Jonathan, diagnosed prenatally with an encephalocele and hydrocephalus, is proving that if you have a pulse, you have a purpose.

Catholic Resources

The National Catholic Bioethics Center Website
Ethics and Medics: A Commentary of The National Catholic Bioethics Center on Health Care and the Lif ...
The primary challenge we face with a poor prenatal diagnosis is not about the “end of the story” or about the outcomes, disabilities, or even capabilities associated with any particular condition. Ultimately, our challenge is to continue to bear witness, by our words and actions, to the fact that a poor prenatal diagnosis does not affect the inherent dignity, the unique and unrepeatable human reality, of a baby.
Ethics and Medics: Prenatal Testing and Denial of Care ...
Parents deserve straightforward, accurate, and current medical information about their child’s condition to empower them to be informed partners in their child’s medical treatment. When Kayelee Childers was diagnosed with trisomy 18, the genetic counselor handed her family a brochure about her condition, informed them that Kayelee had only a slim chance of living to one year, and left the room. Natalie Childers said they were “shocked that they didn’t get more detail from the geneticist” or have a chance to ask questions. There was “no counseling, no compassion, and we were never asked for our input.”
Ethical Care of Infants with a Life-Limiting Prenatal Diagnosis ...
In the majority of cases, the most accurate information regarding the diagnosis, prognosis, and possible treatment options for a baby with a prenatal diagnosis can only be gained with a full medical evaluation of the child by appropriate medical specialists after he/she is born. Parents, who are charged with acting in their child’s best interests, have both the right and the duty to gain such information in order to make medically informed and ethically appropriate decisions concerning their child’s medical care.
"Newborn Care and 'Lethal' Prenatal Diagnosis" ...
While parents believe the assertion of lethality to be clinically significant, fatal terminology conveys a false impression that a prognosis can be made with certainty prenatally. Not only is that untrue, but studies have found that when offered the same medical care as other babies at birth, newborns with conditions like trisomy 13 and 18 can do better than anticipated. A 2016 study reported that the one-year survival rate jumped to 69–71 percent among infants who had a variety of indicated surgical interventions. In 2017 researchers at Stanford University and the University of Arkansas found that the survival rate almost doubled among babies with trisomy 18 if they received heart surgery. Yet parents are still routinely told that these genetic syndromes are lethal, and that basic care and treatment for secondary conditions is futile. Indeed, the diagnosis itself can affect the prognosis and become a self-fulfilling prophecy, as noted by neonatologist Martin McCaffrey: “As regards predicting a condition is lethal, potentially lifesaving treatments are withheld. As a result, patients who might have survived will then die, perpetuating the belief that the condition is lethal.”