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The Down Syndrome Decision

January 31, 2099

For many people, Down syndrome represents the face of developmental disability. Because of the distinctive physical characteristics associated with it, individuals with Down syndrome are often recognized and understood to have some form of intellectual challenge. But for many in society that is the end of their knowledge about this genetic condition.

400,000 American citizens have Down syndrome. That is roughly equivalent to two thirds of the population of Wyoming. In 95% of cases it results from a person having a full extra copy of chromosome 21. In the United States it occurs at a rate of one out of every 691 births, and each year about 6,000 people in our nation are born with it. This chromosomal disorder affects an individual physically as well as intellectually. However, it in no way detracts from their humanity or the fact that they are entitled to the same rights as someone who has one less chromosome.

But, unfortunately, the statistics regarding this subject cannot be discussed without including the heartbreaking rate that pregnancies are ended because of this particular condition.

In the United States, 90% of pregnancies are terminated when a prenatal diagnosis of Down syndrome is made.

This statistic is so disturbing it is actually difficult to comprehend.

In reality it means that when you see a new baby girl or boy with Down syndrome you are looking at a human being that has already defied incredible odds, but that is just the beginning. Throughout their life they will be forced to defy the odds at every turn. Professionals will set arbitrary limits on what they think they will achieve, and they will surpass them. Some people will shun them or pity them, but they will rise above such limited thinking. From time to time individuals will be verbally cruel, but they will return that small mindedness with an open acceptance that they share with every person they meet. They will make those in their life feel blessed for having the chance to know them, and they will make the world a more tolerant and accepting place, all because they were fortunate to be part of the small minority who were allowed to be born.

That is why it is imperative that, as a society, we come to the understanding that just because a prenatal test shows that a baby has Down syndrome it does not somehow lessen the value of their life. They are still an equal human being just as they were before the test results. Their life has profound meaning, and they can have an impact on the world around them. People with Down syndrome have every right to exist, but they are completely dependent on others to allow them to be born.

When a diagnosis of Down syndrome is made, the decision of whether or not to let her baby be born will affect the rest of the mother’s life. Whether she realizes it or not everything in her future will be different because of the decision she makes. It cannot be otherwise. She will either have a son or daughter that will give her certain experiences in life, many of which will be beautiful and joyful, or she will not have those memories to treasure. Adding a child to a family changes the dynamics of life in every conceivable way, but to not have that child present also alters all the possible relationships and interactions that could have taken place. Because a person cannot reverse the decision to end their baby’s life it is a choice that remains with them for however long they live.

For many people one of the most important considerations that go into choosing whether or not to terminate a Down syndrome pregnancy hinges on what type of life that child will be able to have. As parents we all want the same things for our children .We want them to be happy. We want them to enjoy life. We want them to experience fulfillment, and we want them to love us. A child with Down syndrome is certainly capable of all those things.

Each of these individuals has their own distinct personality, emotions, hopes, dreams, and aspirations. They have their own interests, concerns and expectations. They have triumphs and victories, and their need for love and friendship is the same as yours and mine. When they are given the opportunities they deserve, they live the most rewarding and fulfilling life they possibly can just like every other member of society.

For those of us who work in this field we know from personal experience what individuals with Down syndrome can achieve and accomplish. We have seen firsthand their happiness and the joy they can impart to others. And although we are aware of the many challenges faced by families that raise children with developmental disabilities, we also get to witness the unconditional love and commitment that binds those families together.

While no one is in a position to judge others who feel differently about bringing a child with a disability into the world, it is impossible to remain silent when so many are not given the chance to live just because of their genetic makeup. To not allow a life to come into the world simply because of who they are is an incredibly dangerous path for humanity to go down.

Well intentioned people on the other side of this argument often claim that those who believe that Down syndrome is not a reason to terminate a pregnancy have what they like to refer to as an “emotional” point of view rather than a logical one. But this is a pointless debate because the decision to terminate any pregnancy is wrapped in such overwhelming emotion that it is impossible to rely on logic alone. How could it be otherwise? Creating a life is the very embodiment of human emotion; therefore it cannot be separated from the decision to end that same life.

Even those who view a baby in the womb as nothing more than a nonhuman collection of cells understand that becoming a parent is one of the most emotional things that can happen to a person, and it is no less true for a mother or father who has a child with a developmental disability. It is an unarguable fact that emotion is an important aspect of what makes us human.

However, if a purely logical approach to such a life altering decision is attempted then it should be based on learning everything possible about Down syndrome, including what the possibilities are for their son or daughter to have a fulfilling and rewarding life. In the end, logic will clearly show that their baby is a person who deserves the opportunity to live, but the joy or regret that will accompany their choice to either continue the pregnancy or to terminate will bear witness to the undeniable power that emotion plays in their decision.

But ultimately it is not emotion but rather logic and reason that dictate that a baby girl in the womb with Down syndrome is not just a meaningless mass of tissue. She is a human being. She has a developing brain and a beating heart. She has eye lashes and finger nails. She has a particular hair color. She actively moves and kicks. She peacefully sucks her thumb. And, just as she will do for the rest of her life, she responds to the sound of her mother’s voice. That baby girl is a person, just like those who created her.

When a little boy with Down syndrome hugs his mother as tightly as he can, how can she regret giving him life? When that mom looks into her child’s eyes and sees his joy and delight how can she have second thoughts about continuing the pregnancy? When that mother hears the giggling and laughter of her son how can she believe he does not have the right to live? When that child shows his mother that he loves her more than anyone else in the world ever will, how can allowing him to be born possibly be a mistake?

If a pregnant woman could go ten years into the future and ask her child with Down syndrome if they were happy to be alive and to be a part of her family we all know what their answer would be.