By Tracy Winsor, the co founder to a ministry that provides comprehensive support to parents carrying to term following a prenatal diagnosis.
“The infant diagnosed prenatally with a life-limiting disability which is considered to be lethal is not only vulnerable to abortion at diagnosis, but also vulnerable to medical neglect or futility care if carried to term and born alive.
Sadly, the care of living infants with negative prognoses has been impacted by the medical community’s increasingly common perspective that abortion is a reasonable treatment option for infants identified prenatally as disabled. Parents should understand that their decision to carry to term and what it says about their commitment to meet the basic needs of a medically fragile child may not in fact have any impact on the perspective of their medical providers.
For those obstetricians, maternal fetal medicine specialists, and neonatologists who thought abortion was the best option, there may be the judgment that any care is futile because the baby will die anyway. Disability bias can also impact the perspective of medical providers who may feel that the life of the frail infant is not worth saving because the baby’s life of disability is not worth living. In this environment, the willingness to offer and/or provide basic care in support of the life of a baby with a significant prenatal diagnosis must be asserted by the parents.
Following is a list of elements of basic care that may be withdrawn from a prenatally diagnosed baby:
A full range of treatment options associated with maternal complications of pregnancy such as pre-eclampsia may not be offered when the prognosis for baby is considered poor based on a prenatal diagnosis. Rather than offering hospitalization for instance, parents may be encouraged to deliver early.
Commitment to a live birth cannot be assumed even if articulated by the parents. Parents who want routine fetal monitoring during labor and delivery, and the option of a c-section in the event of fetal distress often must advocate for such to include changing medical providers and hospitals if necessary.
Typical resuscitative measures offered to infants not identified as disabled by way of a prenatal diagnosis are often not offered routinely for babies with a serious prenatal diagnosis. Again, parents who want support for the frail baby who isn’t breathing well at birth and is perceived as having a condition “incompatible with life” will need to advocate for such.
Infants with genetic syndromes characterized as “incompatible with life” and/or serious brain anomalies are often not offered surgical treatment options for conditions such as heart defects or omphaloceles. A handful of children’s hospitals around the country are willing to look past the diagnosis, and instead evaluate the individual child so as to best determine if such a surgery would be beneficial.
Lastly, feeding and hydration may be presented to parents as prolonging the inevitable if a living infant has a genetic syndrome characterized as “incompatible with life” and/or a serious brain anomaly, etc. Similarly, such infants being fed who do not tolerate feeding well or for whom a specific formula is problematic for instance may be characterized as having an inability to be fed. There may be no evaluation to determine if medications for reflux and/or a different feeding option (such as a nasogastric tube) and/or a different formula are more favorable for that baby.
Both birth planning and the establishment of a plan of care for medically fragile babies being carried to term following a prenatal diagnosis is imperative for parents. Even if there is the expectation that a baby will not survive to birth or that a baby will only live briefly after birth, it is important that parents carrying to term have informed consent regarding the options they have for care during pregnancy, at labor and delivery, and in the newborn period. While not all babies with serious prenatal diagnoses can be saved, parents have the fundamental right to direct the care of their babies no matter how frail or how brief their lives might be.”
For more information regarding birth planning and perinatal hospice, visit www.benotafraid.net.