When you search Google for Trisomy disorders there is so much information, most of it devastating.  There are 3 relatively common genetic disorders being Trisomy 13, 18, and 21.  Trisomy 21- Down Syndrome is the one most of us know well because it is the most compatible with life.  Though there are children with Trisomy 13- Patau Syndrome and Trisomy 18- Edward Syndrome, who are living, there are often far more complications with their health than those born with Down Syndrome.

When I started sharing Cedar’s story on social media I was closely following another mama who was pregnant and testing showed that her child would likely have a genetic disorder.  Her blog posts kept me in tears as each week progressed until one day she delivered a beautiful little girl, who was diagnosed at birth with Trisomy 13.  Just the little difference of where on the gene map that extra genetic material shows up can often mean the difference between life and death.  So sadly, that mama had to say goodbye to her sweet babe on day 3 of life.  It is situations such as this that leave me realizing that we each need to be thankful for what we are given.

So many moms that I have encountered who receive a prenatal diagnosis of Down Syndrome express a worry that their child will not look like them.  Quite the opposite is true actually, gene expression is a funny thing, though the characteristics of Down Syndrome are present to varying degrees, the expression of the family’s hair color, eye color, skin color and other characteristics is pretty undeniable.

Just take a peek at this picture and tell me there is not a strong family resemblance between my 6 children, regardless of the characteristics of Down Syndrome that my Cedar exhibits.

This is such a sad time in the social history of Down Syndrome.  Not only were the lifesaving heart surgeries that we now see performed almost routinely on our children with severe heart defects not available back then, but even if they were, they might not have had a chance.  You see, that was still in the time when doctors could refuse to provide care to children with Down Syndrome.  Children with Down Syndrome were often seen as not worthy and too burdensome to bother saving.

Just typing that pains my mama heart.

The case that prompted the passing of the Baby Doe law is so tragic it brings tears to my eyes.

Baby Doe is the name of an amendment to the Child Abuse Law passed in 1984 in the United States that sets forth specific criteria and guidelines for the treatment of seriously ill and/or disabled newborns, regardless of the wishes of the parents. The law came about as a result of several widely publicized cases involving the deaths of handicapped newborns. The parents of these children withheld standard medical treatment for correctable gastrointestinal birth defects, leading to their death by preventing nutrition and hydration. The primary case was a 1982 incident involving “Baby Doe”, a Bloomington, Indiana, baby with Down syndromewhose parents declined surgery to fix esophageal atresia with tracheoesophageal fistula, leading to the baby’s death.

So, in the day we are living in now, children are not only protected by this law, but doctors are also required to treat children who need major or minor surgery for health issues, regardless of whether they have an intellectual disability or not.  Prior to the passing of this law, if a child had a medical condition and the parents wanted treatment, it was up to the doctor if they wanted to provide treatment.  There were some doctors who refused treatment to children with medical handicaps, regardless of the parent’s wishes.

 

Up until the 1980’s here in the United States, it was common practice for parents to be told that institutions were best suited to rear their children who had been identified as having Down Syndrome.  I was floored when I learned this fact because that meant that even in my lifetime when I was born, there were children being institutionalized for having an extra gene.

It was in the 1970’s that some grassroots efforts into a novel idea of early intervention began to come on the scene and some parents were choosing a different path for their children.  These pioneer parents, for whatever reason, were choosing to go against the grain and raise their children in the family home.  Some of them were deciding that they would raise their child much like any parent would raise a child, and they were giving them the opportunities afforded to all children.  Their efforts were succeeding and studies showed that those children who were raised in the family home actually had a higher IQ than those who were placed into an institutionalized setting.  I do not know if this was a perfectly executed scientific study or not, however, common sense and life experience tells me that when rearing children you often get expect.  In the event that many of these individuals were placed in an institution and were not expected to learn, grow, and become independent, they likely would not.

I have high expectations for Cedar, with some built-in level of understanding as well.  I am not out of touch with reality and I realize that he will have more struggles than his typical siblings, but I expect great things.  It may take him longer but I expect to homeschool him and teach him alongside his typical siblings, I expect he will have household chores as do my other children, I expect him to learn to be polite, to learn to communicate, to learn to become as independent as possible and to thrive.

I am thankful to the parents of just a generation before me who turned an about face and decided that they would start to change the way our children were treated.  I am thankful that when I learned of Cedar’s diagnosis there was not pressure to place him away from our home.  I am thankful that our nation has closed the doors on this dark time in our history.

Up until this point, John Langdon Down had received all of the notoriety, after all he first identified the common characteristics (mostly physical ones) that go along with the syndrome.  However, John Langdon Down had a few things wrong.  He had mistakenly made the conclusion that the syndrome might be as a result of the parents having had Tuberculosis.  As the years went on, and more facts were learned about the human genes it was Dr. Jerome Lejeune who, in 1959, discovered what we parents today call the “magical gene”.  The one that is an extra, or extraordinary part of our loved ones with Down Syndrome.  It has also given rise to more proper terminology for the genetic disorder as it is, in fact, a Trisomy disorder because there is a third copy of the 21st chromosome.  This discovery allowed for more research (though still not enough) to determine that the disorder is not something that is caused by the parent’s doing or by the parents having caught a communicable disease.