A parent’s love for their child can be a fierce and fearful thing. It can give the ability to act heroically, even supernaturally, if faced with something that threatens the beloved child’s life or safety.
On September 8, 2008, Thomas S. Vander Woude was working on his family farm with his 20-year-old son, Joseph, when Joseph fell through the cover of a septic tank, plunging into the sewage below. Without any thought for his own safety, Tom dove into the tank and held his son’s head above the foul sewage until he could be rescued.
While Joseph survived the incident, Tom drowned in the stinking darkness. The family lost their beloved husband and father, friends lost a devoted and faithful companion, Christendom College lost their athletics director, and the world gained a hero whose inspiring story of selfless love should never be forgotten.
Augmenting the poignant beauty of his sacrifice, Tom’s son Joseph has Down syndrome.
Today is World Down Syndrome Day. There could be no better day to revere Tom’s memory and his valorous act because it points to one single object: the love of a father for his disabled son. An extra chromosome doesn’t matter to parents who love their children.
Dr. Brian Skotko, a geneticist and the director of the Down Syndrome Program at Massachusetts General Hospital, has researched family attitudes toward Down syndrome and shown that 99% of parents reported loving their child with Down syndrome, and 97% expressed pride in them. Additionally, 79% felt their outlook on life had become more positive because of their child. Only 5% felt embarrassed by their child, and 4% regretted having them.
The same year that Tom Vander Woude surrendered his life to save his son, Congress passed a bill that was intended to share this kind of news with families. Introduced by Senator Ted Kennedy of Massachusetts and Senator Sam Brownback of Kansas, the legislation required the federal government to make up-to-date, evidence-based information available about conditions that could be subject to prenatal or early postnatal diagnosis — conditions like Down syndrome.
Research has also shown that the Down syndrome population is about 30% less than it would be if there was no ability to prenatally diagnose the condition, and the bill was intended to make certain families had good information before acting on a prenatal diagnosis.
The Kennedy-Brownback bill was never funded by Congress, so individual states began to take up the task of passing similar legislation. To date, 23 states have implemented laws that are intended to make certain that families have the whole story about what it’s like to have a child with Down syndrome — the love families share as well as the challenges they might expect to encounter. Organizations like The National Center for Prenatal and Postnatal Diagnosis and others have produced excellent supporting materials, easily accessible in print or for wide distribution through their website.
Asking physicians to provide factual and balanced information to families seems like a reasonable request, but recent research shows that the laws either haven’t been observed by physicians or the information accepted by families.
Two research papers by Dr. Skotko and his team yielded disappointing results.
“Parents’ perceptions of the quality of postnatal medical support have declined, suggesting that legislative reform, medical education, and parent-to-parent outreach programs have been insufficient to effect a change in parental perceptions,” they wrote.
According to one paper, which surveys prenatal care, respondents “experienced substantial fear and anxiety and reported that their physicians provided insufficient contact information or explanatory materials.” Further, “an increased proportion of parents felt that their physicians encouraged pregnancy termination.”
On this World Down Syndrome Day, we should ask ourselves why this attitude of discrimination toward disability remain so deeply rooted in our culture, especially in the healing professions. From Skotko’s research, one parent said doctors and staff “constantly pressur[ed] us to terminate” and “treated us like we were crazy” for refusing; that parent felt so “traumatiz[ed]” that they changed providers. Another parent “got repeated calls to schedule a termination, even though we had all agreed to get an expedited anatomy scan before any decision was made,” while another was repeatedly reminded “that I only had so much time left to terminate.”
If there is a lesson to take from Tom Vander Woude’s sacrifice, it is that it validated Dr. Skotko’s research. Parents who accept children with Down syndrome love them fiercely.
* * *
Mark Bradford is the Fellow for Persons with Intellectual and Developmental Disabilities at the Word on Fire Institute.
The views expressed in this piece are those of the author and do not necessarily represent those of The Daily Wire.
[#item_full_content]
[[{“value”:”
A parent’s love for their child can be a fierce and fearful thing. It can give the ability to act heroically, even supernaturally, if faced with something that threatens the beloved child’s life or safety.
On September 8, 2008, Thomas S. Vander Woude was working on his family farm with his 20-year-old son, Joseph, when Joseph fell through the cover of a septic tank, plunging into the sewage below. Without any thought for his own safety, Tom dove into the tank and held his son’s head above the foul sewage until he could be rescued.
While Joseph survived the incident, Tom drowned in the stinking darkness. The family lost their beloved husband and father, friends lost a devoted and faithful companion, Christendom College lost their athletics director, and the world gained a hero whose inspiring story of selfless love should never be forgotten.
Augmenting the poignant beauty of his sacrifice, Tom’s son Joseph has Down syndrome.
Today is World Down Syndrome Day. There could be no better day to revere Tom’s memory and his valorous act because it points to one single object: the love of a father for his disabled son. An extra chromosome doesn’t matter to parents who love their children.
Dr. Brian Skotko, a geneticist and the director of the Down Syndrome Program at Massachusetts General Hospital, has researched family attitudes toward Down syndrome and shown that 99% of parents reported loving their child with Down syndrome, and 97% expressed pride in them. Additionally, 79% felt their outlook on life had become more positive because of their child. Only 5% felt embarrassed by their child, and 4% regretted having them.
The same year that Tom Vander Woude surrendered his life to save his son, Congress passed a bill that was intended to share this kind of news with families. Introduced by Senator Ted Kennedy of Massachusetts and Senator Sam Brownback of Kansas, the legislation required the federal government to make up-to-date, evidence-based information available about conditions that could be subject to prenatal or early postnatal diagnosis — conditions like Down syndrome.
Research has also shown that the Down syndrome population is about 30% less than it would be if there was no ability to prenatally diagnose the condition, and the bill was intended to make certain families had good information before acting on a prenatal diagnosis.
The Kennedy-Brownback bill was never funded by Congress, so individual states began to take up the task of passing similar legislation. To date, 23 states have implemented laws that are intended to make certain that families have the whole story about what it’s like to have a child with Down syndrome — the love families share as well as the challenges they might expect to encounter. Organizations like The National Center for Prenatal and Postnatal Diagnosis and others have produced excellent supporting materials, easily accessible in print or for wide distribution through their website.
Asking physicians to provide factual and balanced information to families seems like a reasonable request, but recent research shows that the laws either haven’t been observed by physicians or the information accepted by families.
Two research papers by Dr. Skotko and his team yielded disappointing results.
“Parents’ perceptions of the quality of postnatal medical support have declined, suggesting that legislative reform, medical education, and parent-to-parent outreach programs have been insufficient to effect a change in parental perceptions,” they wrote.
According to one paper, which surveys prenatal care, respondents “experienced substantial fear and anxiety and reported that their physicians provided insufficient contact information or explanatory materials.” Further, “an increased proportion of parents felt that their physicians encouraged pregnancy termination.”
On this World Down Syndrome Day, we should ask ourselves why this attitude of discrimination toward disability remain so deeply rooted in our culture, especially in the healing professions. From Skotko’s research, one parent said doctors and staff “constantly pressur[ed] us to terminate” and “treated us like we were crazy” for refusing; that parent felt so “traumatiz[ed]” that they changed providers. Another parent “got repeated calls to schedule a termination, even though we had all agreed to get an expedited anatomy scan before any decision was made,” while another was repeatedly reminded “that I only had so much time left to terminate.”
If there is a lesson to take from Tom Vander Woude’s sacrifice, it is that it validated Dr. Skotko’s research. Parents who accept children with Down syndrome love them fiercely.
* * *
Mark Bradford is the Fellow for Persons with Intellectual and Developmental Disabilities at the Word on Fire Institute.
The views expressed in this piece are those of the author and do not necessarily represent those of The Daily Wire.
“}]]
