Guest Article By Martin McCaffrey, in response to President Biden’s State of the Union Address:
The story of Kate Cox and her decision to abort her baby with trisomy 18 is a tragedy. News outlets repeatedly reported that trisomy 18 meant “her pregnancy may not survive to birth, and, if it does, her baby would be stillborn or survive for only minutes, hours, or days.” Ms. Cox also reported in the legal filings that she did not want her baby to die of “suffocation or a heart attack.” The Coxs were told by her doctors that in her case, “there was virtually no chance that their baby would survive to birth or long afterwards.”
Kate Cox, on receiving a prenatal diagnosis of trisomy 18 in her baby, was told what parents across the world are generally told by medical providers. Literature shows that the overwhelming majority of maternal and neonatal doctors generally use “lethal” to describe trisomy 18.There is though no universally agreed upon list of fetal conditions that can be described as “lethal”. Trisomy 18, and a similar genetic abnormality, trisomy 13, all have regularly reported survivals of months, years or decades. The ability to survive in these cases is related to the baby’s unique medical conditions, the willingness of doctors to overcome bias and provide care, and the readiness of parents to accept what is a rule for such infants, severe mental and motor impairment.
Baby’s with trisomy 18 are at risk for medical conditions which vary. Depending on the medical findings, care is absolutely possible. All the conditions we see in a baby with trisomy 18 can present in infants with normal chromosomes. What is reported in the legal filings for Ms. Cox’s baby are not unusual for trisomy 18. Survival of infants with trisomy 18 has been reported as 10% at one year. What this statistic fails to report is the fact that prenatal diagnosis significantly reduces survival. When a prenatal diagnosis is made infants are highly unlikely to be discharged home from the hospital. A decision will usually have been made prenatally, in consultation with specialists, that the baby will only receive perinatal hospice (“comfort care”) consisting of warmth, narcotics and psychosocial support for the family. Alternatively, when infants are fed, medically supported and survive to one month, survivals at one year are 30-50%.
Based on the literature, the regular use of lethal language by healthcare providers to describe trisomy 18 is inappropriate. Yet it continues. This is for many of us a life issue. It clearly seems that those supporting abortion are determined to maintain that there is a class of infants that can be prenatally diagnosed as “lethal”. Whether pro-life or not, however, the Cox case should concern all of us as an informed consent issue. The agreed upon proper term for describing conditions like trisomy 18 is “life-limiting”. Given this reality, informed consent for parents considering such a prenatal diagnosis should include the possibility of a longer and meaningful life with the same interventions that would be provided to a child with normal chromosomes, or perinatal hospice in the rarer cases where medical support will only delay death and is unduly burdensome. The parents of children with trisomy 18 and 13 who have received medical interventions report high quality of life for their children, positive impacts on siblings, and in a future pregnancy with a trisomy diagnosis, that they would either never have tested, or would continue the pregnancy, in 89% of the cases.
None of us knows what Ms. Cox’s counseling from her specialists was, but it is clear she was exposed to an abundance of lethal language. It is not reported that she and her husband ever heard in any substantive manner about the possibility of a life that could be months, years or decades for their baby. If there were unusual severe defects identified was the value of perinatal hospice to mom and baby discussed? These possibilities all should have been examined. This is the informed consent the Cox’s deserved as they struggled with this dreadful decision.
I pray that the Coxs will be given the grace needed to live with a decision for which they may not have been fully informed. Others will need grace as well in the wake of the Biden administration’s reckless decision to honor Ms. Cox’s decision to abort her child at a State of the Union address. This is March, our third month. Thousands of parents, many who have had to fight the bias of the medical establishment to get the care they needed for their prenatally diagnosed trisomy pregnancies and for their babies after birth, value March as a time to celebrate the lives of their trisomy family members. The need to fight to get maternal and newborn care for your life limited child is a traumatic journey. These families will need grace to salve the old wounds that the President will re-expose by applauding the decision, during trisomy month, of a mother to end the life of her trisomy child.
