This letter was sent to ZENIT in regard to a recent article on prenatal testing:
A little over eight years ago, my niece heard these words from a woman, "I will not bring this child into the world." The woman was not an expectant mother, she was my niece's OB/GYN. At five months into her pregnancy, an ultrasound revealed my niece's child had no apparent brain matter. A subsequent ultrasound revealed that her son had an encephelocele and that the build up of spinal fluid had squished his brain to the top of his head making the brain itself undetectable on a regular ultrasound. Many experts advised termination of the pregnancy.
My niece and her husband decided to bring their little boy into the world even if it meant just a few precious moments with their little son or if it meant a lifetime of constant care. They had to find a neonatologist, a new delivery doctor and even a new pediatrician who would agree to care for their son with his special needs. Three months later, my niece gave birth to her second child. He was taken that week into surgery where they implanted a VP shunt to drain the excess spinal fluid to allow room for his brain. They were told their son probably would not see, hear, talk or walk.
Today, this young boy attends second grade, is preparing to make his first communion, sees and comments on the beauty that surrounds him, asks his grandma to play the piano for him, is surprisingly articulate and is able to walk. While he has occasional seizures, he is a thriving little person deserving of care. Ultimately, he is a child of God, deserving of the special place in this world that God intended for him.
I guess my point is, prenatal testing is very worthwhile when it helps to prepare doctors and parents to help the child in need of help, but it can be very harmful and seductive when "experts" become the judge and jury of such a child and use it as a means to determine which children should live and which children they refuse to bring into the world.
Thanks and God bless you!
And to share another more tragic outcome, I submit to you a fellow blogger's account:
When I came back, I had a wait (of course), and the radiologist came in to do the scan herself. About 15 minutes later she flipped the lights back on and dropped a bomb. A big bomb. Congenital Heart Defect. What they had seen earlier, but couldn't tell me without having an M.D. confirm it was that the baby's heart is asymmetrical. The left ventricle is not growing.
They let me call B's office (I'd left my cell in the car), I just told his boss to send him home without giving any specifics (although considering I was crying, he probably didn't need them), and they called a genetic counselor down to talk to me. She dropped another bomb. The disease is nearly always fatal. After taking a family history as far back as I could provide, she said she sees nothing to indicate that this is genetic, or could have been expected, and no indication that it would be expected to happen again. It is a fluke, a random happenstance.
I came home to a frantic B, of course, and just collapsed in his arms while he begged me to talk to him and tell him what was the matter. He, of course, sat me down in front of a computer, he sat down in front of another, and we both started researching. I'll save you the trouble.
"one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects... without treatment... uniformly fatal, often within the first hours or days of life" - Cincinnati Children's
and later, after meeting with the Cardiologist:
The pediatric cardiologist spent almost 2 hours examining the heart of our baby boy. From the beginning, it was evident that it was not a healthy heart. Only 3 of the 4 chambers were pumping blood. The other chamber looked like a knot of scar tissue. B could tell almost from the first picture that it wasn't right, but we both were hoping that the defect would be something that our child could live with.Their decision? Death for the child by labor induction.
The doctor laid out our choices and the odds the baby would survive with the necessary surgeries. Even though the odds were better than we thought, our baby would still lead a life of sickness and pain.
Until the third surgery, our son would not be getting enough oxygen. His developing brain would be starved of the fuel it needed to function properly. Three years. It would be three years before he would get the oxygen he needed to be healthy. Who knows what damage that would cause?
And if you wish to see the pictures the mother posted of her beautiful and perfect baby following his forced birth and subsequent death, click here. We would have loved to have welcomed the little boy into our home. His little heart beat for three hours and eight minutes.