WASHINGTON — The most vulnerable person in the United States might be an unborn child diagnosed in the womb with having a genetic abnormality such as Down syndrome or spina bifida.

Several studies in recent years have shown that unborn babies with those types of disabilities are aborted at rates as high as 90%.

“Any abortion is one too many, but there are certain populations that are disproportionately targeted for termination, and one of those is little ones in the womb who have poor prenatal diagnoses,” said Jeanne Monahan, president of the March for Life Education and Defense Fund.

“Every Life Is a Gift” was the theme of the 2015 March for Life, the annual gathering of pro-life activists in Washington, held on Jan. 22, the anniversary of the U.S. Supreme Court’s 1973 decisions in Roe v. Wade and Doe v. Bolton that legalized abortion.

“Our theme focuses on the beauty of imperfection, the beauty of every single life, regardless of how they are conceived, regardless if they have a disability. Every single life is a gift,” Monahan told the Register.

Every year, the March for Life chooses a theme to highlight a pressing issue facing the pro-life movement. Monahan said the 2015 March for Life focused on the dignity and inherent value of the disabled unborn in a year that marks the 25th anniversary of the Americans With Disabilities Act, the federal law that has provided anti-discrimination protections and resources to millions of disabled Americans.

“There’s an irony that, in this time, when there are more resources than ever, when life can be fuller for people with disabilities, the majority of those who are in the womb who have a disability are never brought to term,” Monahan said.

The abortion rates for the disabled unborn are staggering. A 2012 review of 24 studies on abortion rates related to Down syndrome — the most common genetic cause of intellectual disability — found that, in hospital settings, 93% of parents decided to abort their unborn child at 16 weeks gestation or less. The abortion rate for later-term pregnancies was lower, but still a whopping 85%. The review calculated a weighted mean abortion rate of about 67%. A number of other studies also show abortion rates for unborn children diagnosed with Down syndrome to be between 80% and 90%, with differences varying by region.

“That’s horribly troubling. We have in the United States, and across the world, this incredible disparity between the lived experiences of families who have loved ones with Down syndrome and the decision being made by a majority of parents once they receive the prenatal diagnosis,” said Mark Bradford, president of the Jerome Lejeune Foundation USA, a nonprofit that raises funds for research, care and advocacy on behalf of those with genetic intellectual disabilities.

Bradford, who spoke at the Culture of Life Seminar in Washington, held the day before the March for Life, told the Register that various studies indicate that many physicians insist that patients abort their unborn children following what is known as a poor prenatal diagnosis. The parents are often afraid of the unknown and fearful that their child will suffer needlessly if the pregnancy is brought to term.

However, those fears are not supported: Other studies show high levels of happiness among people with disabilities, such as Down syndrome, and their families.

Research conducted by Dr. Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital, indicates 99% of people with Down syndrome are happy with their lives and that 99% of parents said they love their child with Down syndrome. Also, 97% of people with Down syndrome said they like who they are.

“Almost 100% of parents, siblings and individuals living with Down syndrome themselves report that they are happy with their lives, and yet, according to one poll in 2014, we have 25% of women who are being recommended to abort their children after a prenatal diagnosis. I always point out the discrepancy between the lived experiences of families and what the medical community is still largely promoting,” Bradford said.

Charles Donovan, president of the Susan B. Anthony List Education Fund, told the Register that it is a goal of the pro-life community to move medical professionals away from an ideology that sees abortion as a “quick fix” toward a full embrace of the Hippocratic standard of doing no harm to the patient.

“If we get to the point where people with medical conditions and genetic abnormalities are being killed, then that’s no longer medicine at that point. It’s not a medical act at all. It’s an act of rejection,” said Donovan.

 

Helpful Information

Donovan said that the Susan B. Anthony List Education Fund is encouraging states to pass legislation modeled on the Kennedy-Brownback Act, a 2008 federal law intended to provide accurate, peer-reviewed information to parents who receive a prenatal diagnosis for Down syndrome or other conditions, such as trisomy 18 and anencephaly. Pro-life officials say the federal law has never been funded, increasing the need for state-level action. Massachusetts, Kentucky, Maryland, Delaware, Louisiana, Pennsylvania and Ohio have passed their versions of what is also known as the Down Syndrome Information Act.

“The reason for these laws is to try to counter what’s happening in the medical profession, where you have all these untrue things people are being given [in conversations] by their physician following a prenatal diagnosis,” Bradford said.

Another potential source of bad information for parents is the new generation of prenatal screening tests. The tests, including MaterniT21, are unregulated and claim to detect with almost 100% certainty whether an unborn child is at risk for Down syndrome and other chromosomal abnormalities.

However, a recent investigation by the New England Center for Investigative Reporting found that the companies are overselling the accuracy of their tests and not doing enough to educate parents and doctors about the risks of false alarms. The report noted the cases of three women at Stanford University who aborted healthy babies after they received high-risk screen results. Bradford said the U.S. Food and Drug Administration is considering regulating those new screening tests.

“These tests are not accurate, and they were never intended to be a diagnostic test, but, rather, a screening test that should be confirmed,” Bradford said. “Some people are considering those results to be a diagnosis and then making the decision to terminate the pregnancy or not based on those test results.”

Parents with a pro-life perspective can still be devastated to receive a poor prenatal diagnosis, especially if they are told their child will not live long after being born. Several ministries have been established to support parents in carrying those pregnancies to term.

In 1995, Annalise LaHood co-founded Isaiah’s Promise in the Washington metropolitan area to support families who receive severe or fatal prenatal diagnoses. Isaiah’s Promise also helps parents across the country who carry difficult pregnancies to term.

“We basically become peers and friends, assisting the parents with accepting the baby they’ve been given, rather than the baby they thought they had,” LaHood said, adding that parents often worry about their children suffering and whether carrying them to term is the right thing to do.

Said LaHood, “A lot of it is the suffering of the child. A lot of it is the suffering for themselves going through a nine-month pregnancy knowing that either the baby will die, or if their child has a disability, wondering who is going to help them in caring for that child in the future. It’s a big worry, and it can be a burden, but every parent we have served who has either had a child with a disability or a child who died has not regretted their decision to carry them to term.”

On its Facebook page, the March for Life has been posting articles and pictures of young children with disabilities and their families. Monahan said a radiologist whose primary job is reading ultrasounds spoke at the March for Life on the reality that every life is a gift.

“The message is totally countercultural,” Monahan said. “I think it also speaks to the truth in every human heart. None of us is perfect. A lot of the fun, beauty and adventure in life comes from things that are not perfect and that were not planned. The lived experiences of these families who have children with disabilities show these are happy and fulfilled families.”

“We’re not saying their lives are easy,” Monahan added, “but it’s a great life.”

Brian Fraga writes from

Fall River, Massachusetts.