By Dave Andrusko
There was never any doubt that once prenatal screening becomes nearly universal that it would not only be babies diagnosed with Down syndrome who would be “terminated” in massive numbers.
Denmark, along with Iceland and South Korea, are among the nations that promise to be “Down syndrome free by 2030.”
And they are well on their way. According to Claire Chretien, Carsten Søndergaard, the Danish Ambassador to Ireland, wrote to the Irish government that “In 2016, there were four children born in Denmark with Down’s syndrome after prenatal diagnosis.”
Four.
Now, according to MedPage Today’s Ashley Lyles
Fewer children are being born with major congenital heart disease (CHD) as more of these pregnancies are terminated now that prenatal screening is widespread in Denmark, a population-based study showed.
Before 2004 when prenatal screening was offered only to women with high-risk pregnancies, barely one-half of 1% of babies diagnosed with a major CHD were “terminated,” Lyles reported.
However, according to a report in JAMA Cardiology written by Rebekka Lytzen, PhD, of Copenhagen University, and colleagues, now that screenings are universal (and free), 39.1% of babies diagnosed with a major CHD are aborted.
An accompanying editorial and the response solicited by MedPage Today, leaves the reader wondering what this says for American babies.
Lyles writes of the accompanying editorial, “Ethical Implications of Prenatal Screening for Congenital Heart Disease,” written by Dr. Alexander Kon, that
More prenatal detection of CHD through screening is an advantage, Alexander Kon, MD, of the University of California San Diego, noted in an accompanying editorial. Early detection can give families more time for decision making and more control in deciding whether or not to terminate the pregnancy as well as improve surgical outcomes and facilitate excellent neonatal palliative care, he wrote.
But Kon also noted that access to such care is not available to everyone in the U.S., particularly the socioeconomically disadvantaged. For poorer families, he suggested, the decision to carry a pregnancy to term may be especially fraught.
In particular, they may encounter “significant pressure to minimize expensive treatments” from medical professionals who consider TOP to be a more economical option or from their own socioeconomic situation in regions without universal healthcare, Kon noted.
Hani Najm, MD, of Cleveland Clinic in Ohio, who was not involved in the study, told MedPage Today that surgeons have become so good in operating on “complex hearts” that the overall mortality rate is around 1%. So far, so good.
To be fair it is difficult to calibrate Dr. Najm’s further response but there are some ominous undertones.
Lyles writes
Najm agreed there are “ethical questions” when considering “the cost of these surgeries are expensive, the chances that these families and their parents have to come back again frequently to visit the hospitals and maybe two or three operations, [and] the quality of life might not be as normal as other children or other children with simple congenital heart disease.”
These matters are “quite complex and difficult,” therefore, Najm said, “each case should be managed independently of the others, based on the circumstances of the parents and the congenital anomaly itself.
What does this say about “Quality of Life” judgments? What happened to that 1% mortality rate for surgery on these babies? What does it suggest about what hospital personnel might say to lower income parents?
If the rate is up to 39.1% in Denmark (as of 2013), what is it now? What is said to parents that convinces them to abort their babies?
And what is the implication for the United States and families whose unborn babies are diagnosed with major congenital heart disease?