By Ryan Verret
LARTL Associate Director
We need to be honest about how widespread eugenic practices and philosophies affect legislation, administration, and human conduct in our nation today. This particularly affects the decision-making process in choosing whether or not an unborn child with a disability should live or even have ordinary forms of care provided to them.
New prenatal testing and modern technology have made it more possible than ever to know extensive details about a baby's health in utero. In those cases of an adverse diagnosis, these prenatal advancements provide crucial information needed to treat or better prepare for the birth of the child.
Tragically, however, a diagnosis of any type of disability evokes a subtle or even coercive conversation with parents about the immediate termination of a life that truly just needs additional care and support for a certain period of time. A terrible example of this is the accepted statistic that 90 percent of the babies diagnosed with Down syndrome in the womb are aborted.
Daily we encounter countless stories of medical discrimination toward unborn children with disabilities. A common, almost duty-bound refrain often echoes from doctors who quickly conclude that some are just not worthy of life even if they happen to make it to delivery.
"We have to think about resources, and you know he will never be able to contribute to society," one doctor told friends of mine when they asked why they had been given false information about their 2-day-old son. The parents were told that no children with their son's disability, Trisomy 18, survived more than two weeks after birth, and they were instructed to simply wrap their son in a blanket and let him die.
But they didn't listen to this inaccurate and misleading information. If not for my friends recognizing that their son Peter's life was worthy of both life-sustaining treatment and the normal care given to any individual, they would not have been able to experience his most recent 6th birthday. What a blessing Peter has been to his family and to all those around him!
Peter beat the odds of the terminal diagnosis given to him with the tremendous support of his parents, but we do recognize that he was the exception and not the norm.
Few parents are ever prepared to receive an adverse prenatal diagnosis or any abnormal test results concerning their unborn child. It is extremely difficult to hear your child will very likely not survive delivery or will die shortly after birth. Many of us know families who have gone through this experience with children having challenging diagnoses such as Trisomy 18, a congenital disorder of glycosylation, spina bifida, or anencephaly.
The difficult journey of accepting an unborn child's probable terminal diagnosis is a process that takes time. For many parents, unfortunately, abortion seems to be the logical solution to the supposed issue of one's disability being incompatible with life.
But we don't agree with this logic. We stand for supporting and respecting all human life regardless of disability, illness, or life expectancy. Every person, no matter the particular illness or disability, has a right to medical care and should not be discriminated against just because it would be cheaper to let them die or never be born. Authentic support will always begin and end with providing care and avoiding any decision that directly ends the life of another.
I should note that some forms of treatment are truly futile and if continued would result in much more of a burden than a benefit to anyone approaching death, no matter the age. Authentic care does not always mean choosing to do every possible extraordinary procedure or treatment in hopes of extending life. Each situation must always be looked at individually always ensuring that basic forms of ordinary care are provided as either the healing or the dying process continues.
In instances where treatment is unsuccessful and/or futile, perinatal hospice becomes an opportunity to provide authentic care for these precious children whose days are unfortunately numbered on this earth. It is because of organizations and providers that use this method that parents like my friends can respond to a physician, not with agreement to terminate the pregnancy or by letting their newborn die without treatment, but with love.
It is our prayer that every parent facing these trying circumstances can say, "I have peace that we carried him to term. I know in my heart that I have given my son all that I could and loved him every day of his life."
To learn more about this developing form of perinatal hospice and palliative care, and where these services are provided in Louisiana, you can visit www.PerinitalHospice.org. In addition, I have collaborated with another national support group called Prenatal Partners for Life (www.PrenatalPartnersForLife.org). Prenatal Partners for Life has been a tremendous blessing and solace to many families around our nation. Along with our entire organization, I am available to provide assistance in any way I can.
(Email questions to Ryan at firstname.lastname@example.org)