Learning that their child may have a disability or severe medical condition is among parents' worst fears and receiving that news during pregnancy is especially fraught.
When older (born) children receive an adverse diagnosis, their community and medical providers come alongside parents offering support to them and their child. When a diagnosis is received in the womb, the response can be quite different.
Parents are often counseled to end the baby’s life through abortion, and even told that abortion is “medically necessary” or “in the best interest of the baby.” When told of a “serious” prenatal diagnosis, about 80% of parents resort to abortion, often due to pressure from medical professionals. There is seldom discussion about life-affirming options.
Research has found that most genetic counselors mention termination (86%) while fewer mention the continuation of the pregnancy (37%) or adoption (13%), thus denying critical information about treatment options or perinatal hospice. More often, an abortion is recommended, leading to an estimated 12,092 abortions each year in the U.S.
Without accurate information that includes life-affirming options, parents cannot make an informed decision.
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Even for the most severe life-limiting conditions, when presented with the option to continue a pregnancy, over 80% of parents chose perinatal hospice (defined below) over abortion.
Parents deserve to be informed about life-affirming options. As prenatal diagnosis becomes more common, due to increased availability of in utero screening and testing, the following should be considered:
1) Clarify the type of screen or test conducted
Screening tests are often conflated with diagnostic tests. Parents may believe their child was “diagnosed” with a condition when in fact a screening result only showed an increased risk of disease which may be far from certain.
A positive screening result is not always definitive and should not be the basis for making a decision about abortion. Read more about screening versus diagnosis tests here.
2) Consider the unborn patient’s specific diagnosis
Healthcare providers sometimes recommend abortion out of a bias against children with special needs or medically complex conditions.
Identifying the patient’s specific diagnosis and relevant resources is essential to informed consent.
Some parents may think that any diagnosis is an instant death sentence, which often isn’t the case.
Ask questions to understand likely outcomes for the unborn patient. Is the child’s illness treatable? If so, what treatment options are available in-utero or after birth?
Or, will the diagnosis result in living with a disability like Down syndrome? In this case, what community support is available for persons with disabilities?
Or, will it potentially take the child’s life soon after birth? If so, consider perinatal hospice options that allow a natural death.
3) Avoid using discriminatory terms when referring to the unborn patient
There are several reasons not to label a life-limiting condition as “incompatible with life” or a “lethal abnormality.”
First, these terms downplay the child’s life in the womb.
Second, in-utero conditions once thought to be a death sentence are now treatable, and technology is constantly advancing to save more lives with complex conditions.
Third, we would never call a born person with special needs “incompatible with life” just because their condition may eventually take their life. This term dehumanizes him or her creating a bias toward abortion. The presumptions that accompany these terms also reduce life-saving intervention.
For example, research has shown that families who receive a trisomy diagnosis at birth, rather than prenatally, have a higher survivability rate, due to more willingness on the part of the hospital to provide life-sustaining intervention.
Other studies have shown significant long-term survival for selected patients with Trisomy 13 and 18 after receiving interventions for congenital heart disease. Patients who received corrective treatment demonstrated median survival of 32 years, while patients who received palliative treatment demonstrated shorter median survival of 10 years.
4) Reject abortion
Major medical associations are pro-abortion and often advise their memberships to recommend abortion after an adverse diagnosis in the womb.
Often this bias toward aborting unborn children with disabilities is presented using “softened” terms for abortion.
They may recommend a surgical abortion using suction (D&C) or dismemberment (D&E) calling the procedure a “medically necessary termination.”
Or, they may recommend what they call “labor induction,” “voluntary interruption of labor,” or “early delivery.”
These induction abortions often involve early delivery of the baby and/or withholding life-saving medical treatment, resulting in the baby dying soon after delivery as a result of premature birth. Some families are not aware this approach is used as a form of abortion.
5) Know the difference between perinatal palliative care, perinatal hospice, and perinatal bereavement care
When parents choose to continue the pregnancy and carry to term after a prenatal diagnosis, the care the child receives can include perinatal palliative care, perinatal hospice, or perinatal bereavement care.
When used appropriately, perinatal palliative care describes the comprehensive multidisciplinary consultation process undertaken by the medical team once a diagnosis is made, leading up to the time around and shortly after birth.
This may or may not involve active treatment or interventions for the baby if available but should NOT involve discussions of aborting to hasten death.
When treatment is not an option, perinatal hospice is a life-affirming alternative to abortion that provides comprehensive prenatal, perinatal, and postnatal (before birth, near birth, and after birth) care and support to newborn infants with a life-limiting diagnosis, and their families, in order to improve their quality of life.
Perinatal hospice may include perinatal bereavement care, such as holding the baby, taking pictures, making footprint keepsakes, etc. Perinatal bereavement care alone, apart from perinatal hospice, can be a positive service in cases such as mid-trimester miscarriage, stillbirth, pre-viability deliveries from spontaneous labor or medically necessary induction to save a mother’s life.
Unfortunately, the term “perinatal hospice” can be misused and misapplied to justify an early induction abortion. Therefore, families should beware of anyone offering perinatal bereavement care without an effort to continue the child’s life as long as is possible without putting the mother in danger.
6) Stabilize and evaluate the child’s condition at birth
Newborns, regardless of their condition, should be stabilized and evaluated.
When a child is diagnosed in the womb with a condition that is potentially life-limiting or medically complex, medical personnel can prepare for the worst-case scenario - death shortly after birth - but should not assume that is the only outcome in every case.
There may be potentially life-saving interventions available that significantly increase survival.
Sometimes, a child’s diagnosis is less severe than initially thought. Even for the sickest children, stabilization and evaluation can happen quickly without interfering in the family’s plan for perinatal hospice. Stabilization and evaluation don’t have to include extraordinary support options described below.
7) Require ordinary support
Infants should receive ordinary and compassionate care—which typically entails at least being fed and hydrated by a means best suited to them to ensure that the infant doesn’t needlessly die of dehydration or starvation.
There is an ethical difference between dying of their condition, rather than dying from neglect.
8) Weigh extraordinary support options
Stabilization and evaluation may reveal that the life-limiting diagnosis was accurate, and extraordinary interventions will not offer benefit.
Conversely, a determination may be made that the child could tolerate an intervention that would elongate their life. There have been many cases of the miraculous and unexpected survival of a child after birth when given appropriate medical care.
Any end-of-life decision, whether for a child with a life-limiting condition or a medically complex one, necessitates weighing the risks and benefits of aggressive medical intervention.
Not all children can be saved or helped by aggressive intervention. However, some can, and hospitals may fail to offer these interventions.
Some hospitals don’t have advanced medical and technological capability, or they believe the interventions that are available are unable to help this particular child.
Others may have nefarious motives for withholding treatment, making erroneous judgments that the child’s life is too expensive or unworthy to save.
Children who have a prenatal diagnosis of medically complex illnesses or conditions are no less valuable and should not be denied available treatments when requested by their family. The National Catholic Bioethics Center offers a free 24/7 hotline to help navigate these decisions.
Prenatal diagnosis is not easy to face, but abortion is not the answer. It is important that families receive accurate information and life-affirming emotional support along the way.
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Fortunately, PrenatalDiagnosis.org is now available to help families as they navigate this journey.
Visit PrenatalDiagnosis.org or more information.
Editor's note: Chaney Mullins Gooley serves as Provider Support Manager for Her PLAN. The PrenatalDiagnosis.org website is a collaboration among Her PLAN, String of Pearls, Be Not Afraid (BNA), Charlotte Lozier Institute (CLI), and Heartbeat International, which manages Pregnancy Help News.