I want to pull a couple of sections from this article
“Like most parents, Leilani Duff’s mother and father say they want the best for their little girl, who celebrated her first birthday last week. But had they known what risks she faced in life, the child might never have been born.
The Yorba Linda parents are suing their obstetrician, Dr. William Dieterich, for unspecified damages because they say he failed to tell them about a state-mandated screening to test for diseases such as spina bifida â€” which has left Leilani paralyzed from the knees down.
The couple say they were denied the opportunity to decide whether to abort the pregnancy, something they would have weighed had they known the child would be born with a disabling defect that can result in paralysis, profound learning disabilities and fluid on the brain.
“The whole rationale of the statute is to provide pregnant women with the information so they can make an informed decision about whether or not they want to keep the baby,” said Larry Eisenberg, the lawyer for Dan Fraker and Colleen Duff. “In this case, the parents would have had to think long and hard about it, but my understanding is they would have opted for an abortion.”
For Leilani’s parents, though, the lawsuit is not about resentment of an imperfect child or the doctor who delivered her, they say. California law required Dieterich to tell them about the alpha fetoprotein blood test that probably would have detected spina bifida in their unborn daughter, and they say his negligence has saddled them with costs they would not have chosen to pay.
When Colleen Duff started seeing Dieterich during her pregnancy, she says he did not detail what the AFP screening was for or follow the state-mandated process requiring her written authorization if she opted not to take the test, typically performed between the 15th and 18th weeks of pregnancy.”
For me this story hits home in a different way. This past July we were blessed with the birth of healthy baby girl. But that is not the whole story.
Last March my wife took the AFP test and the results came up positive. On a Thursday evening we received a telephone call telling us that she had tested positive and that we needed to meet with a genetic counselor.
The next afternoon we met with a woman who explained that the results showed a good chance that our child was going to be born with Down’s Syndrome. We were devastated and reviewed our options.
The problem was that the test was not conclusive and it was not possible to know whether this would come to pass without engaging in an amniocentisis. We scheduled it as soon as possible (Wednesday of the following week) and then the two of us wandered around for the next few days wondering if it was true and trying to figure out what we would do.
The Amnio came and then we waited another 8 days or so for them to tell us that we were one of the many “false positives.” That is correct, we tested positive, but it was a “false positive” and because of this flaw we spent several long weeks worried for nothing.
We came to find out that we knew a number of other couples who had also had this experience and that this is not uncommon. The AFP test is not constructed well and the parameters are such that it casts a very wide net. I was very unhappy about this
So I wonder why the paper did not cover this aspect of the test. I am very much pro-choice, but I find it irresponsible not to provide a complete picture.
I thank G-d for my healthy daughter and I cannot imagine what life would be like without her. But I can imagine that for some people this news could be so unbearable they might take unnecessary steps that they can never take back.