If we only had the choice.

[mikester]

Article is below my comments...

Man...these parents probably aren't that bad and the issues they are facing are rough and I can't even imagine them. If their kid were to ever read this article....that's going to hurt.

As far as the genetic testing is concerned...My wife is pregnant with our first and she's over 35. In the beginning they recommended us to a genetic counselor to evaluate both of us and see what our chances for things were. We were given the opportunity for this test as well as many others. We got some of the non invasive tests (which mainly tested our blood for traits and actually LOOKED at the baby through a sonogram for the other things) and turned down the invasive tests (not that they are published as being that invasive). We turned down the AFP as well in favor of a high res sonogram. We had the Cystic Fibrosis test done - not really knowing what it was and the wife came up positive and I was negative. It was a bit of a pain because by the time we got the results we wouldn't have been able to do anything about it (as if we would).

In the end I think the Dr's should say something to the effect of "Okay - I have all these tests that we can run to check out the baby and it's health BUT if any of them come back badly the only thing to do about it is either accept it OR abort it. So if you aren't ready or willing to abort it - pass on the tests."

A friend was telling me about a Catholic couple who were pregnant with their first and the Dr approached them regarding tests and the politley turned the Dr. down. Said it didn't matter - any of it. They get what they get and that is all there is to it. Baby turned out fine too.

I hope we are as fortunate - so far everything looks good. We have another high res sonogram today and the baby's due in December.


If Only We'd Known, Parents Say
* Yorba Linda pair whose girl has spina bifida sue their doctor, saying they weren't informed and given a chance to consider abortion.

By Claire Luna, Times Staff Writer

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 — 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."

The couple declined to be interviewed, and Dieterich, 54, of Yorba Linda, did not return phone calls to his home and office.

So-called "wrongful birth" and "wrongful life" lawsuits have become increasingly common, experts say, because of advances in genetic testing and climbing healthcare costs that have increased the financial consequences of disabilities.

But as the numbers mount, some experts say the ethical issues that should accompany the debate are lost. Such lawsuits create the expectation that every child has a right to be born perfect and that anything less is cause for legal action, said the legislative counsel for the Ohio Right to Life Society.

"You have a situation where the only way to avoid injury to a child is to abort him or her," said attorney Mark Lally. "It comes down to saying her life isn't worth living. That's not someplace we want to go with our laws."

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.

"The doctor said, 'Oh, you're young, you're 27, you have another child,' " the couple's lawyer said. "He told them, 'You don't need to do this test.' It was a brief conversation and nothing more was done."

When Leilani was born Aug. 29, 2003, her parents immediately knew something was wrong. Part of the baby's lower spinal cord was exposed, and she was transferred within hours from St. Jude Medical Center in Fullerton to Children's Hospital of Orange County for surgery.

Although her parents still don't know how much Leilani's condition will affect her mental capacity, they told their lawyer it is obvious her life will be impaired. The couple has had to hire a nurse to supervise their daughter almost constantly, Fraker has had to take time off from his job as an oil field maintenance mechanic, and the baby requires increasingly specialized medical equipment.

"The demands are enormous," Eisenberg said.

The California Supreme Court recognized the right to sue for wrongful life in 1982. Since then, dozens of couples have filed similar lawsuits, typically involving neglected or botched testing, failed vasectomies or misread sonograms.

In 1986, a young Huntington Beach couple sued a physician who they said failed to perform a procedure that would have detected Down syndrome in their unborn child. Three years ago, the mother of Nathaniel Galvez sued her Los Angeles doctor, contending her son was born with spinal defects that would have been detected had the physician performed an AFP blood test. In the first case, jurors determined the physician was not at fault. The second case was settled out of court.

Although such lawsuits may seem to devalue the lives of people with disabilities and imperfections, said USC law professor Michael Shapiro, the legal issue is whether expectant mothers received poor physician care.

"The courts dwell on the fact that they don't want doctors and testing laboratories making gross errors," Shapiro said. "When a doctor doesn't fulfill his state-mandated responsibility to inform patients about these tests in the first place, it deprives parents of their opportunity to choose."

The rise in wrongful-life suits and the threat of legal responsibility for a child's defects puts obstetricians in the uncomfortable position of recommending, if not insisting on, abortion when there is the slightest doubt, said one physician.

"On one side you have a liability mess that puts you on the hook for the rest of the child's life," said Dr. T. Murphy Goodwin, chief of maternal-fetal medicine at USC's Keck School of Medicine.

"The other side, you have carte blanche to avoid the potential for these kinds of problems by shading the discussion to advocate abortion. There's almost no adverse reaction if a doctor tells someone to terminate a pregnancy based on faulty information."

The problem is that too many couples have an expectation that genetic testing exists so they can avoid unwanted outcomes, Goodwin said, whether that be life-threatening diseases, cosmetic defects or even having a female child.

"Rarely does the decision to have an abortion come down to life or death," said Goodwin, a member of the American Assn. of Pro-Life Obstetricians and Gynecologists.

[Superman]

This is indeed a fascinating debate, and one which holds the wholre right-to-life thing up for all to see. Couples routinely have to decide between the inconvenience and expense of care for someone whose capacity is limited, versus the convenience and financial benefits of not having to deal with all that. But at the same time they are also deciding whether a person will or will not have a life. Some folks are arguing that the second consideration far outweighs and outstrips, the first. Categorically. They say you don't get to the first question, because you don't get past the second.

Also, it has been my personal observation that families with the challenge of raising a handicapped person are happy with that lot. They report having a hard time imagining life without their beautiful (handicapped) child. They report being richly rewarded for their efforts. In fact, I notice that having hardships, in general, makes people happy. Funny, that. But much of life is a bit counter-intuitive.

[Moses]

I don't buy it.

If they said the doctor completely forgot about offering the test it would make more sense.

I can't imagine any doctor taking the time to discuss a state required test then not offering it. More likely, he told the couple the test was optional (true) and it was unlikely that the child would have spina bifida anyway (also true). Then I suspect the doctor neglected to have the patient sign the form officially declining the test.

Dot your "i's" and cross your "t's". It's a tough business. They haven't found a way to sue god, so the doc has to pay.

[mikester]

Come to think of it - I don't recall signing that form...

[Moses]

Originally posted by mikester
Come to think of it - I don't recall signing that form...

You probably didn't. Docs are notoriously bad at legal documentation, preferring to focus their efforts on patients.

Had your child been born with a detectable malady, you would have a legal slam-dunk.

[mikester]

Well..as I stated above - my child isn't born yet.

[id10t]

We had a similar situation with our (blessedly healthy and happy) son.

Wife was 35, tests showed a "higher than normal" chance for trisomy-18 - a severe birth defect that typically results in still born children, or severely deformed children who do not live for more than a few weeks. After several high-res ultrasounds, the OBs felt that the actual chance for the defect was miniscule - about 1%. Doing an amniocentisis would rule it out (or in) 100%, but the chances of the amnio proceedure causing problems (like a miscarriage or other damage) were relatively higher (3-5%) than the possibility of T-18 wiht no signs visible on the US. We declined the amnio based on that alone.

[gr8fl4porsche]

I had a little girl 7.5 months ago. My wife and I were both 37 so that puts us in the high risk category for a first child. We went through the counseling about all the testing available - did our research and made our decision. The odds of us having a baby born with Downs was extremely high. We decided to do the CVS test which is invasive and could result in a miscarriage - my wife had a miscarriage during our first pregnancy. Even with the risk of another miscarriage, it was important to us to have a healthy child.

A friend of mine had her first child at age 38 - no testing - unfortunately her daughter was born with Downs.

One side of the testing debate is that it is selfish not to bring a child into this world if you know ahead of time about a birth defect - the other side wonders if it is fair to the child to be knowingly brought into the world with defects. That is why we all get to make our own decisions.

Here is the result of our delimna.

[mikester]

I don't know if you can tell but that's a pic of my kid's face taken today.

[mikester]

Oops

Here it is.



We were lucky - we worked out into "low risk" for everything in the end (so far) so we opted out of anything invasive because the chances of a problem there were higher than our chances for a problem with the baby.

[Moses]

Originally posted by mikester
Oops

Here it is.

Cute nose!

[mikester]

[dtw]

No further commentary needed:

[tabs]

The eyes are the window to the soul....

[350HP930]

We did as many tests as possible and since my wife was tiny and had gestational diabetis it was concidered a high risk pregnancy which got us ultrasound pics each month.