 |
|
|
|
 |
|
|
 |
|
|
|
 |
|
|
|
|
|
|
|
"The doctors' in utero diagnosis was both correct and incorrect. The doctors' prognosis at birth was both correct and incorrect. The doctors wrote off his life in the beginning because of these prognoses and his slim statistical chance of survival. They placed no value on the suffering that saving his life would entail," from Joshua's Miracle
|
|
|
|
|
|
|
|
 |
|
|
|
 |
|
|
|
|
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.
|
|
|
|
|
Expecting Benjamin; The Value Of A Life |
|
|
|
by Eldad Ben-Eliezer |
|
|
|
“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.
|
|
|
|
|
|
|
 |
|
 |
|
|
by
Cat
|
|
|
|
At 6 weeks gestation we learned we were pregnant - a joyful surprise! At 7 1/2 weeks there were some problems. Two blood tests 48 hours apart indicated I'd miscarried, we were devastated. Just to be sure, the doctor performed an internal ultrasound. There she was, the size of a kidney bean shaped like a shrimp with a beating heart - hallelujah!
About a month later, the routine blood screening red flagged for Downs syndrome, but we didn't think much of it. Just to be sure that there wasn't anything we could possibly "cure" in-utero or prepare for before the birth, we went ahead with amnio. When it came back positive for mosaic trisomy16 we were in shock, but within minutes located the DOC 16 website and were encouraged that there was hope.
Meeting with the...
read the rest
|
|
|
