A study published in the American Journal of Medical Genetics has revealed that the median survival time for babies born alive with Trisomy 13 has nearly doubled from three months to six months, and that one in three babies with the condition are currently surviving for more than a year after birth.
Coinciding with this increased lifespan trend is an increase in the rate at which patients with Trisomy 13 are undergoing surgery. That rate rose from 16% in the years 1996-2008 to 28% in the years 2009-2021.
Researchers explained that “because of the poor prognosis” that babies with Trisomy 13 often receive, they are typically not provided with aggressive treatment or necessary surgeries that would help them live longer. It has been found that babies who do receive these treatments live longer than those who don’t.
“The decision not to implement aggressive treatment due to poor prognosis has changed in recent years because of the increased emphasis placed on parental decision-making with the ‘best interest of the child standard’ in mind, and in conjunction with the shared decision-making model and patient-centered care advocated in the USA,” researchers from the National Center for Child Health and Development, in Tokyo wrote.
They added, “In the present study, the median survival time of patients with trisomy 13 who underwent surgery almost doubled from 1996–2008 (91 days) to 2009–2021 (179 days). Previous studies have reported that palliative and corrective surgical interventions can be safely performed in patients with trisomy 13 and contribute to prolonged survival.”
Even longer median survival times of up to 451 days have been reported in children with Trisomy 13 who received standard pediatric care in Japan.
READ: Diagnosed with Trisomy 13, doctors advised abortion, but Victory is thriving
Dr. John Lantos, a pediatrician in America and a medical ethics expert, wrote an editorial for the medical journal JAMA in which he said, “[P]redictions of lethality become self-fulfilling prophecies.” He added that “the concept of quality of life is too vague and subjective to be helpful as a criterion for deciding about the appropriateness of treatment.”
Vicky Wall, the mother of a baby girl named Líadán, who was diagnosed with Trisomy 18, said that this study proves that many doctors are “behind the curve in terms of new developments” in the care of children with Trisomy 13 and Trisomy 18. She argued that the new research highlights a need for a change in mindset regarding children with these conditions.
“I have spoken to so many families who say they felt belittled, rejected, and ignored because their unborn baby was diagnosed with Trisomy 13 or 18,” she said. “They say they were offered no hope, that they were pushed towards abortion, that when they asked what could be done for baby after birth they were made to feel they were being ridiculous. It’s shameful, and it has to stop.”
Wall pointed to the life of Baby Christopher Kiely who was aborted in the National Maternity Hospital in Ireland at the urging of doctors after being misdiagnosed with Trisomy 18, saying it is an example of the “serious failing in our medical culture, and one that has not been fully addressed.”
“No one can know with certainty what any infant is thinking, feeling, or experiencing, but what is observed can be interpreted,” Wall said. “Children with Trisomy 13 and 18 smile and laugh. They are not in pain. They give and receive love. These factors suggest that their subjective quality of life is not so poor that life-prolonging treatment should not be offered.”
