Five Facts About “Life-Limiting” Fetal Conditions

Executive Summary

• Diagnosis of a life-limiting fetal condition should not be an automatic death sentence. Abortion is not a cure for disease.
• Babies diagnosed with a life-limiting condition often face discrimination, both inside and outside of the womb.
• The journey for each baby with a life-limiting condition is unique and these babies deserve special attention and individualized medical care, just like any other child, tailored to their unique needs.

“Life-limiting” fetal conditions are a broad spectrum of maladies with care paths that include a life that may extend well beyond the initial birth period, weeks, months, years, or decades.  There are many different types of such conditions. The causes of these disorders are not often known, though some may have a genetic cause, others may be due to exposure to toxins or drugs, and still a large number have unknown causes.

Babies prenatally diagnosed with a life-limiting condition often face discrimination. Some continue to refer to these conditions as “lethal” or “fatal” or “incompatible with life.” In such cases abortion is often offered as the only option to families. The fact is, however, that some of these babies may require very minimal medical support after birth or may benefit and be stabilized for further evaluation with medical interventions routinely performed on babies without lethal labels. The journey for each baby with a life-limiting disorder is unique. Babies with the most severe life-limiting disorders, like anencephaly, are often able to have a live birth but may have a short life. Infants with genetic disorders like trisomy 13 or 18, however, are very different, and their ability to survive is based on their unique medical conditions which can affect different organs in different babies, and the willingness of medical teams to provide medical support standardly offered to babies with normal chromosomes for the same medical conditions.

Simply, for many life-limiting conditions, it is often impossible for anyone to know until after birth exactly what the outcome will be and the support or extent of support a baby will need. It’s also possible that a prenatal screening result is wrong and the baby doesn’t have any condition that warrants extra support. Even the New York Times has concerns about accurate prenatal diagnosis.

Therefore, no matter the prenatal diagnosis and whether it’s correct or not, each baby needs and deserves special attention and individualized medical care if necessary, tailored to the child’s specific condition. Since there is so much variability, families that receive a prenatal diagnosis should consider all potential life paths for their baby.

 FACT #1: With proper care, many babies diagnosed with trisomy 13 or 18 survive.

Trisomy disorders like trisomy 13 (T13) or trisomy 18 (T18) may be called “life-limiting,” but this term can mean very different things for different babies. In fact, a baby diagnosed with T13 or T18 might live one, five, 10, or even 30 years, depending on the type and severity of the condition. One study found that 20% of babies with T13 and 13% with T18 lived at least one year. When babies receive corrective care interventions to treat heart and airway problems, an even higher percentage of babies survive.

Faith Smith’s parents were pressured to have an abortion when testing indicated she had trisomy 18. Instead, they fought to ensure she received proper medical care, and she is a thriving teenager and a beloved sister to her four siblings. A Japanese study shows that when babies with T18 received appropriate care and surgical interventions, 81.5% survived until discharge and the percentage of babies living until at least their first birthday increased from 34.5% to 59.3%. In the U.S., babies with T13 or T18 who received surgery to treat heart problems had a median survival of 15 or 16 years. Due to these advances in medical care, recent studies have concluded that all treatment options should be considered for children with T13 and T18 based on their unique, individual needs, and doctors should never assume that care will be ineffective simply because the baby has T13 or T18. Additionally, support organizations exist to walk alongside families and help navigate treatment options with case management, resources, and assistance in accessing the medical care they need.

 FACT #2:  Postnatal support for serious conditions helps babies defy expectations.

For serious neural tube defects in which large portions of the brain do not form, doctors cannot always accurately predict the outcome for an individual baby. Doctors expected baby Jaxon Buell, who was diagnosed with microhydranencephaly in the womb, to die shortly after birth, but he shocked the world by thriving and living until age five. Angela Morales was also expected to pass away after receiving an anencephaly diagnosis, but she lived nearly four years as a beloved member of her family. A published case report on another little girl who lived to be two-and-a-half emphasizes that families should be informed that some children with anencephaly will live for extended periods and that treatment plans should be made in advance to include basic standards of care such as routine shots and pediatric care.

 FACT #3:  Babies diagnosed with a life-limiting condition often face discrimination, both inside and outside of the womb.

Sadly, many babies with a prenatal diagnosis die not because of their medical condition, but because of the discrimination and denial of treatment from the medical establishment. Before birth, as many as 60% of babies with trisomy 13 or 18 are aborted. Abortion is not a cure or treatment for the child’s condition. Furthermore, after they are born, babies with prenatally diagnosed conditions too often do not receive appropriate medical care because doctors assume the worst, making their diagnosis a self-fulfilling prophecy. One study found that the single factor most strongly associated with the longevity of babies with trisomy 13 or 18 was a prenatal diagnosis. When babies were diagnosed prenatally, only 47% lived long enough to be discharged from the hospital, but when doctors didn’t know about the babies’ condition until after they were born, 87% survived to go home. Families like the Smiths have experienced doctors neglecting to provide straightforward, lifesaving medical care to treat an airway condition simply because of their child’s prenatal diagnosis.

 FACT #4: Most fetal conditions do not cause life-threatening risk to the mother.

Just like any other pregnancy, a woman carrying a child with a life-limiting fetal condition may experience a serious pregnancy complication that threatens her life, although this is rare. Examples of complications that could become severe include abnormal amniotic fluid buildup (polyhydramnios), preterm labor, spontaneous rupture of membranes, gestational diabetes, or preeclampsia. Regardless of the fetal diagnosis, however, a life-threatening risk to the mother requires treatment, and is permitted by every state’s abortion laws, even if a necessary maternal-fetal separation results in the unfortunate death of the child. Abortion policy allows physicians to intervene to protect a mother’s life. For more information, read more here.

 FACT #5:  In utero surgery may be a treatment option for some conditions.

Thanks to groundbreaking developments in prenatal surgery, a handful of conditions can be successfully treated before birth, of which some can be life-threatening. Twin girls Annabelle and Andie were diagnosed with twin-to-twin transfusion syndrome (TTTS) while in the womb, which could have proved fatal if left untreated. Instead, Texas Children’s Hospital rushed them and their mother into surgery, and both girls are alive and healthy. High volume fetal therapy centers similarly report a higher than 90% survival rate of at least one baby and a higher than 80% survival rate of both babies after fetal surgery to correct TTTS. For unborn babies that need the most specialized surgical treatment, there are more than 35 medical centers, located in at least 21 states, that perform advanced in utero surgery.

CONCLUSION: Detecting a life-limiting condition before birth should not be a death sentence for the baby. For what other condition outside the womb do we abandon the patient and not provide care, let alone kill the patient? Care of an unborn child with a complex fetal condition should be no different than care of any other child. All life-affirming, individualized treatment options must be considered to provide the best and most compassionate medical care possible. Physicians that care for babies with prenatal diagnoses (T13 and T18) in this advancing landscape of medical interventions are quick to remind us that “[t]o categorically deny interventions to this population is an idea whose time has gone.”

For more information, please see https://lozierinstitute.org/dive-deeper/caring-for-babies-with-fetal-anomalies.