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I was not going to give up on him. God had a plan and I did not know what it was, but I had to trust in that.
-- from "A Case of Multiple Misdiagnoses; Chandler's Story"
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Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on.
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Expecting Benjamin; The Value Of A Life |
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by Eldad Ben-Eliezer |
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“I am sorry to have to tell you this, but there is a high probability that the fetus you are carrying has Down syndrome.” There was a grave look on the ultrasonographer’s face as my wife and I listened to her findings at a routine 16-week scan. According to a recent article, “recognition that their unborn baby has Down syndrome is perhaps the most traumatic diagnosis that a family has to face.” Why?
Despite all the nice words about inclusiveness, society today places a very high value on producing “normal” children. The willingness to spend millions yearly in prenatal screening for Down syndrome, with a view to terminating affected pregnancies, testifies to this. The utilitarian approach is underscored by studies done to show that this screening saves money: the “cost” of having a child with Down syndrome in the USA has been calculated at around $500,000. Even apart from such crass considerations of human life in terms of money, there is an almost universal prejudice against children and adults who are in some way “defective.”
As a parent and medical professional I have been consistently opposed to the taking of life at any stage. And yet I cannot entirely wash my hands of the sentiments that drive this prejudice against disabled children: the wish to have a “normal, presentable” child and avoid any chance of pain and inconvenience. Like any other parents, my wife and I had always hoped that our children would be “normal.” Prior to the births of our other children, we had our own share of anxiety that there might be something “wrong” and always breathed a sigh of relief after being told of a normal scan.
So how did I react when I heard the news of our son? Even though choosing to abort his life was never an option for me, I still had a choice to make: to see him as a burden, a problem, or to accept him already then as a gift. I cannot explain why, but at that crucial moment I knew that I would accept my son just as he was intended to be. I responded with the words, “We would welcome such a child.” I felt completely at peace, and in a sense almost honored at being given this child who would be truly “special.”
Certainly, there were other factors that helped me: my wife had worked in a home for children with Down syndrome, and though she knew the challenges her charges presented, she often spoke of how they had enriched her life immeasurably. We also personally knew and loved several young people with Down syndrome; and finally, I don’t know how we would have coped without the consistent and caring support of our church.
During the following months there was still much uncertainty, with follow-up scans being pronounced normal, but we had already decided that we would welcome our child regardless of his chromosome count, and it was not really a surprise when it was finally confirmed to us after his birth that he did indeed have Down syndrome.
Benjamin arrived at a small, rural birthing center. We could not have asked more of the staff, who were extremely caring and supportive. Looking at our son, with his unique little face, we were again presented with this choice: whether or not to accept him just how he was. Once more the strength was given to us to embrace him wholeheartedly, and our natural anxieties were swept away by a feeling that his birth was so “right.”
I remember our family doctor saying to me a few hours after Benjamin’s birth: “You may feel a sense of loss or shame; this would be only natural and we can help you through this.” I thanked him for his kindness, but responded that there really was no shame or loss, I had received one of the greatest gifts of my life. The joy with which Benjamin’s three brothers and two sisters welcomed the news again confirmed this; a neighbor even told us that his children had said: “I wish we could have a child like that.”
Lest I be accused of complete naivety, let me say that I am fully aware of the “cost” of raising such a child, in terms of illness, education, and family support. We have already frequented cardiology, gastroenterology and audiology departments of local hospitals. There have already been plenty of sleepless nights as we struggle to keep him gaining weight; and this is just the first three months. But I also know that through their joyous affirmation of life such children and adults draw out of us optimism, creativity, and patience in a way no “normal” child can. And in a society where the product of the greatest minds so often is self-destruction, such true “children” offer hope and a reminder that the value of our life is not measured in terms of what we achieve but how much we love.
The future will bring many more challenges but we are confident that as each time we choose to accept the gift of his life, we will see how our lives are enriched. Most of all we know that Benjamin is a person, unique, whole, to be loved, who will bring to us far more than we can ever give him.
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by
Megan
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Steven and I decided on a name for a boy when I was 12 weeks pregnant. We were in bed, lights out, drifting off to sleep when we came up with the name. We agreed so easily, I wondered if we had decided too quickly. We chose the name Samuel because we liked it. We chose the name Evan for a family name. The next morning, I looked up the meaning. Samuel means “God has heard.” Evan has several meanings, but the Welsh meaning stood out to me: “God is good.”
At our 20 week ultrasound, we saw that Sam had several lethal anomalies. The doctors talked about Trisomy 13 and Trisomy 18, but we later learned that what Sam had was much more rare. He had a chromosomal abnormality called Triploidy. When talking about chromosomal abnormalities, most people think of Down syndrome, which is Trisomy 21 (an extra 21st chromosome). Sam had an extra...
read the rest
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