番茄社区

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.

For the 2,695 pregnancies with any major CHD, the termination of pregnancy (TOP) rate increased from 0.6% before 2004, when prenatal screening was offered only to women with high-risk pregnancies, to 39.1% after screening was universally offered free of charge (P<0.001).

Among those cases diagnosed before birth, fully 57.8% of the pregnancies were terminated, reported Rebekka Lytzen, PhD, of Copenhagen University, and colleagues .

The key study outcomes show "that while the live-birth incidence decreased significantly, the incidence was stationary when TOPs were included," Lytzen's group highlighted.

The rate of live births with CHD remained constant at 1.22% across the entire study period, but declined for major CHD from 0.23% before universal screening (1996-2004) to 0.15% afterward (2004-2013). The proportion of major CHD detected prenatally rose from 4.5% to 71.0% (P<0.001).

The study included a review of 14,688 total cases of children (median age 11 years) and fetuses that had congenital heart disease (CHD).

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.

"We've gotten so good at operating on these complex hearts and we have impeccable results with an overall mortality even around 1%, so in some cases [it] depends on what the morphology is. So we have come a long way in how we manage these kids," explained Hani Najm, MD, of Cleveland Clinic in Ohio, in commenting to 番茄社区 on the study, in which he was not involved.

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.

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."

Medical professionals should use all available information, Kon wrote, "to best support families in a nonjudgmental and supportive fashion and must understand the breadth of choices families may reasonably make."

Looking ahead, the authors said having more "centralization of malformation scans" may improve detection rates, and "further studies on the outcomes of major CHD are warranted to prevent TOP in cases with a positive prognosis."