February 20, 2015

Delay in Newborn Testing Can Be Life-Threatening

For a couple of generations, the U.S. routinely has screened the blood of newborns to identify rare genetic conditions. But a recent editorial in USA Today reminded readers that too many delays at too many hospitals and labs are undermining the system’s ability to protect babies.

Noah Wilkerson was one newborn harmed by a health-care facility that took too long. He seemed to be healthy when he was born in 2009 at a hospital in Colorado Springs, Colo. His blood was drawn the next morning, but it took two weeks later before his sample was sent to the state lab, which didn’t process samples on weekends.

A day before the results came back, Noah died of a genetic disorder called MCAD deficiency. It’s a condition in which the body can’t convert some fats to energy. As explained in the original story about Noah in the Milwaukee Journal, a newborn with MCAD deficiency can appear perfectly healthy, but fatty acids are building up in the body, and soon there’s a metabolic crisis.

If the baby goes too long without eating, he or she can die suddenly or end up brain damaged.

But the real tragedy is that if the disorder is detected early, parents can treat it by feeding the child every two hours. “That's often all it takes for a baby with the condition to grow up and lead a normal, healthy life,” the Milwaukee Journal said.

“In an era when overnight delivery is routine,” the USA Today proclaimed, “it is inexcusable that many hospitals fail to get life-saving samples to labs within the three days recommended by the American College of Medical Genetics and Genomics. And inexcusable that state public health officials let them get away with it.”

That pretty much says it all.

About half of all state-run labs are closed on weekends and holidays, according to USA Today. So if your baby has the bad luck to be born late in the week, he or she is even more likely not to get test results in timely fashion.

Many hospitals simply ignore state requirements that samples be sent to labs with dispatch. Some hospitals wait to send samples until they can do so in bulk, and instead of using overnight delivery, as they might be required to do, they use the U.S. mail. States with the worst records, the newspaper said, are Arizona, Mississippi, South Carolina and Texas, where at least 15 in 100 hospitals take five or more days to get samples to labs.

But it’s not easy to find out who’s prompt and who’s dangerously tardy. Public officials in more than 20 states refused to release information to USA Today about hospital timeliness. “Secrecy denies expectant parents the ability to choose hospitals that are speedy and eliminates public pressure to force improvement,” the paper pointed out.

This is inexcusable. Although genetic disorders requiring immediate attention are rare, affecting about 1 in 4,000 newborns a year, if that baby is yours would you want to wait? There’s a reason babies are tested routinely, and the system should address the most vulnerable patients.

In 2012, the paper reported, only two states, Delaware and Iowa, met the speed standard — 99 in 100 of their hospitals delivered samples to labs within three days. Five years after Noah Wilkerson died, Colorado still doesn't process samples on weekends.

Long before you arrive at the hospital to deliver your baby, make sure you know what its newborn testing timeline is, and make sure the staff knows you’re keeping track. After you deliver, ask when the baby will be tested, and when the sample will be sent. Follow up and get confirmation that the promises have been kept.

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February 6, 2015

Exposure to Certain Chemicals During Pregnancy Might Affect Fetus

Researchers have found a link between a fetus’ exposure to two common household chemicals and a lower IQ among the children several years later.

The scientists from Columbia University’s Mailman School of Public Health published their research in the journal PLoS ONE last month. In a news release, they described how children exposed during pregnancy to elevated levels of di-n-butyl phthalate (DnBP) and di-isobutyl phthalate (DiBP) had an average IQ score more than six points lower than children exposed to those chemicals at lower levels.

DnBP and DiBP are found widely in consumer products ranging from dryer sheets to vinyl fabrics to lipstick, hairspray, nail polish and even some kinds of soap. In the U.S., according to the Consumer Product Safety Commission, six kinds of phthalates are banned from toys and other child-care products. But no measures have been taken to protect a developing fetus, such as alerts to pregnant women about potential exposure. In fact, according to the Columbia release, in the U.S., phthalates seldom are listed in a product’s ingredients.

For the study, researchers followed 328 women and their children. They assessed the mothers' exposure to four phthalates — DnBP, DiBP, di-2-ethylhexyl phthalate and diethyl phthalate — during their third trimester of pregnancy by measuring levels of the chemicals' metabolites (signals of how a body processes a substance) in urine. When they were 7, the children were given IQ tests.

Children of mothers exposed during pregnancy to the highest 25% of concentrations of DnBP and DiBP had IQs 6.6 and 7.6 points lower, respectively, than children of mothers exposed to the lowest 25% of concentrations.

The pattern held when specific aspects of IQ were tested, including perceptual reasoning, working memory and processing speed.

The researchers found no associations between the other two phthalates and child IQ.

It’s especially worrisome that, as the study’s lead author said in the news release, "Pregnant women across the United States are exposed to phthalates almost daily, many at levels similar to those that we found were associated with substantial reductions in the IQ of children."

Another scientist involved with the research said, “A six- or seven-point decline in IQ may have substantial consequences for academic achievement and occupational potential.”

It’s impossible to avoid all phthalates in the U.S., but the researchers recommend that pregnant women try to limit their exposure by:

  • not using plastic when they microwave food;

  • avoiding scented products such air fresheners and dryer sheets; and

  • not using recyclable plastics labeled as 3, 6, or 7.

The Columbia results advance earlier research showing an association between prenatal exposure to DnBP and DiBP and children's cognitive and motor development, and behavior when they are 3. And a couple of months ago, Columbia researchers reported a link between prenatal exposure to phthalates and risk for childhood asthma

Although it's not clear how phthalates affect child health, numerous studies show that they disrupt the actions of hormones, including testosterone and thyroid hormone. So it’s best to avoid them if you can.

To see the degree to which pregnant women are exposed to all kinds of chemicals, see our blog of a few years ago, “Dangerous Products Found in Virtually All Pregnant Women.”

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March 7, 2014

Taking Tylenol During Pregnancy Might Elevate Risk of Child with ADHD

As if it weren’t difficult enough to follow all the rules for improving the chances of both a safe pregnancy and a healthy baby, now there’s evidence that pregnant women who take acetaminophen (Tylenol and many other brands) to relieve pain or reduce fever might be raising the risk of bearing a child later diagnosed with attention deficit hyperactivity disorder (ADHD).

A study published in JAMA Pediatrics showed a 40% higher chance of such a diagnosis for children whose mothers took acetaminophen during pregnancy versus those who didn’t.

As explained by the Los Angeles Times, the study doesn’t establish that prenatal exposure to acetaminophen caused the observed increase in diagnosed hyperactivity disorders, prescriptions for ADHD medications or emotional problems in children reported by parents. But the study was designed to address shortcomings of other studies that find an association between an environmental exposure and the appearance of a specific outcome years later.

More than 64,000 Danish mothers and their children were study subjects. Information was collected about pregnant subjects’ acetaminophen use long before problems in their children’s learning or behavior would have become evident. That enabled researchers to avoid what’s called “recall bias” — you can’t pre-judge something you don’t know will happen.

Pediatric subjects were studied from their first trimester in utero for as long as 15 years. In addition to surveying parents about their children’s strengths and weaknesses, the researchers used comprehensive, reliable databases (registries of physician diagnoses and dispensed pharmacy prescriptions) to measure ADHD within the population.

The study concluded that the probability of a child developing ADHD symptoms severe enough to require medication jumped by more than 60% if his or her mother took acetaminophen during the last two trimesters of pregnancy; it rose by almost 30% if acetaminophen was taken only in the third trimester. If mom took the drug during only the first trimester, the increased risk was about 9%.

Because a pregnant woman’s high fever and infection can be dangerous for her fetus, an editorial accompanying the study advised that women and their doctors shouldn’t reject acetaminophen solely based on this study. It said that more information is needed on how acetaminophen might promote ADHD later, when and who is most likely to be affected. The current findings, it advised, “should be interpreted cautiously and should not change practice.”

So what’s a prospective mother to do?

Even medicine deemed safe carries risks, and doubly so for pregnant women. The safest approach is to take the lowest possible dose as seldom as possible, said Dr. Daniel Kahn, a maternal-fetal health specialist interviewed by The Times. He was not involved in the study.

If it doesn’t work, you have to discuss options with your doctor. Kahn added that the study “certainly wouldn’t stop me from treating a fever,” noting that unchecked fevers have been associated with several poor health outcomes in babies, including lowered IQs.

Acetaminophen has gotten some bad publicity of late, largely due to confusing dosing. To understand how to make the most of this medicine without undue risk, see our blog, “Understanding Acetaminophen and How to Make It Safer.”

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September 6, 2013

Study Showing Association Between Induced Labor and Higher Autism Risk for Boys Is Sloppy Science

A study published last month in JAMA Pediatrics indicated that boys whose mothers needed help to initiate or move the process of labor along may have a higher risk of autism.

But there are several reasons why the research contributes less to the body of knowledge and more to the mass of misinformation.

As reported by Bloomberg.com, induced labor, which stimulates the uterus in order to prompt contractions, and augmented labor, which increases the strength, duration and frequency of contractions, showed a 35 percent greater risk of autism in boys than babies whose mothers didn’t need those procedures.

According to the Centers for Disease Control and Prevention, 1 in 50 U.S. children between 6 and 17 years old is diagnosed with an autism spectrum disorder (ASD). Few childrens’ psychological disorders have been given more attention recently than autism, leading to a breathtaking wealth of misinformation about its causes, from vaccinations to diet.

The study was published in JAMA Pediatrics, a prestigious publication that, suggests writer Emily Willingham, should know better than to publish such incomplete research as the induced labor-autism risk study … or at least fully explain its considerable shortcomings.

In her analysis of the study on Forbes.com, Willingham points out that the study “did not show a cause and effect between induced (initiated) or augmented (hastened) labor and autism. It found an increased odds that a child born following a labor induction and augmentation would later be labeled as autistic by special education services. Yet there are problems with reaching even that conclusion.”

Instead of the cause-and-effect conclusion the researchers drew, Willingham said, they could just as easily have said, “Labor induction risk may be raised when child is autistic.”

Willingham noted several possibly influential factors that weren’t included in the study, probably, she surmised, because they weren’t available: mother’s BMI [body mass index, a measure of fitness that identifies percentages of fat and muscle] from pre-pregnancy; father’s age; child head circumference; specific child birth weight; mother’s insurance status; presence of any sibling births in the cohort; and whether or not the child had autistic siblings. “Lack of availability of relevant data,” Willingham states, “can sometimes make a study untenable, at least, and at best should warrant considerable caution in interpretation and speculation.”

Willingham goes into interesting detail about the study’s take on chances of an autism diagnosis and whether or not the mother has a college degree, or smokes, demonstrating, again, that science isn’t simple. We’d go a step further: Social pressure can’t overcome our desire to make it so.

To be clear, the researchers didn’t conclude that standard clinical practices be changed as a result of their study. “The results,” the lead author told Reuters, “don’t dictate there be any change in any clinical practices surrounding birth. The dangers to the mothers and the infants by not inducing or augmenting far outweigh the elevated risk for development of autism.”

In some circumstances, of course, induced labor can help reduce deaths among mothers and babies. But more studies are required to understand more fully why such procedures might be associated with the risk of disorders as elusive as autism.

Willingham’s conclusion reinforces what we hope readers will always consider when reading about research studies, even in the original form:

“This study didn’t show that induction or augmentation during childbirth substantially increases the risk for autism, although it hints at a greater influence of socioeconomic status and by implication, healthcare access. If anything, based on earlier literature, it adds a slight if only mathematical confirmation of the perception that births involving autistic children can be associated with more complications, such as the presence of meconium [fetal defecation], gestational diabetes and fetal distress, than births involving nonautistic children. And that points to induction and augmentation as useful in these situations, not as problematic, and certainly does not affirm them as a risk.”

For more information, see our blogs, “Autism Rates Rise,” and “Helping Parents Through the Autism Maze.”

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February 8, 2013

Electing Early Delivery Is Seldom Wise

It has been nearly 35 years since the American College of Obstetricians and Gynecologists (ACOG) recommended against delivering babies or inducing labor before 39 weeks of gestation, except when there are medical complications, such as the mother's high blood pressure (pre-eclampsia; see our recent blog on the Downton Abbey all-too-real plot line), diabetes or signs that the fetus may be in distress.

So why, then, are an estimated 10 to 15 out of 100 U.S. babies delivered early every year for no medical reason?

That reality is examined in a recent story by Kaiser Health News and the Washington Post. "After 37 weeks, patients really push for it because they are miserable and don't want to be pregnant anymore," Alfred Khoury, director of maternal-fetal medicine at Inova Fairfax Hospital, told KHN/Washington Post. "Or they say, 'My mother is here' or 'I have to be in a wedding.'"

Sometimes, it’s a matter of provider availability. Physicians who work alone or in rural areas might prefer to schedule deliveries before 39 weeks for time-management purposes. That’s a bad idea, but, said Helain J. Landy of the department of obstetrics and gynecology at MedStar Georgetown University Hospital, "The reality of caring for patients, or [doctors'] day-to-day needs, may sometimes interfere with following the guidelines."

In 2012, Patrick Malone represented a family in a medical malpractice lawsuit against a group of obstetricians for brain damage to a baby that resulted from misconceived plans for an early delivery. In that case, the doctor followed outdated medical literature that suggested babies of mothers with gestational diabetes should be delivered early even if monitoring shows the baby is doing fine. Mr. Malone's closing argument of the trial on behalf of both baby and mother can be read here.

Now, poor doctoring and patient ignorance are coming under the control of some government and private insurers, who are discouraging and sometimes penalizing doctors and hospitals for delivering babies early without cause.

It’s a good idea from both a health and financial perspective.

Often, prematurely delivered babies develop problems ranging from breathing and heart disorders to anemia and bleeding in the brain that land them in the neonatal intensive care unit (NICU) where, according to KHN/Washington Post, the average charge is $76,000 per stay. (Learn about NICU injuries in our backgrounder.)

The folks who pay most of that tab also want to avoid subsequent medical costs to treat problems including jaundice, feeding difficulties and learning and developmental issues. Sometimes the health problems of preemies last their whole life.

As reported in the story, UnitedHealthcare, the nation's largest private health insurer, pays hospitals more if they take steps to limit early deliveries without medical cause and show a drop in their rates. And as of July, Medicare, which pays for disabled women to give birth, will require hospitals to report their rates of elective deliveries before 39 weeks. Hospitals might be penalized beginning in 2015 if their rates remain high.

Some insurers refuse to pay for unnecessary early deliveries at all. The South Carolina Medicaid program and BlueCross/BlueShield of South Carolina don’t reimburse providers for performing early deliveries without medical cause. Those two insurers cover more than 8 in 10 births in that state. Several other states either have or are considering such policies.

We’re reluctant to endorse such sweeping measures because individuals have different needs. But unnecessary early delivery is never a good idea.

Even without official prodding, some hospitals have taken steps to curtail elective early deliveries, and some simply won’t perform them. After St. Joseph Medical Center in Houston stopped performing them in 2011, NICU admission rates for babies born between 37 and 39 weeks dropped 25 percent in the first year.

Unfortunately, sometimes brawn works better than brain in encouraging practitioners to curb elective early births. One study mentioned by KHN/WP found that educating doctors about the risks was less effective in reducing rates of early deliveries than having medical staff simply prohibit the practice.

But some physician groups don’t like being told how to practice medicine.

"We oppose the legislative control of medicine," said Jeanne Conry, president-elect of ACOG told KHN/WP. Conry says her organization has developed its own "clear, effective guidelines" laying out clinical markers for determining when early delivery might be appropriate.

And as one obstetrician noted, when states or insurers get involved, doctors may hesitate to deliver early even when there are clinical reasons to do so. "Outcomes are best when there is a doctor-led process, rather than a legislative or payment mandate," he said.

Even the March of Dimes, that notable champion of safe birth practices, is wary of using financial rewards or penalties. "Payment is a really big hammer, and we want to have a comfort level with a policy so we don't cause unintended consequences [such as making doctors reluctant to perform early deliveries even when they are needed],” Cindy Pellegrini, a March of Dimes executive told KHN/WP.

Some doctors welcome the oversight, as one obstetrician said, to help "us all do the right thing" and make it easier to educate women.

But decades after the ACOG guidelines, only 1 in 3 hospitals reports rates of elective early deliveries at or below the goal of 5 in 100, according to the Leapfrog Group, an organization of businesses focused on patient safety. Many still have rates higher than 15 in 100.

Some of the resistance, unfortunately, might be because NICUs are profit centers for many hospitals.

The best way to address the wisdom of full gestation is to educate patients. There’s some work to do there—one survey from a couple years ago involving 650 women who had recently given birth found that half considered it safe to deliver before 37 weeks.

If you are expecting, or expecting to be expecting, make sure you and your obstetrician are on the same page regarding the optimum time for delivery. Do not accept any reason other than medical necessity for inducing labor before the due date, or otherwise delivering prematurely. It’s bad medicine with potentially lifelong consequences.

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December 14, 2012

New Prenatal Test Is Less Risky but Less Trustworthy

Prospective parents who want to know if their baby has a genetic disorder such as Down syndrome are advised to consider amniocentesis or chorionic villus sampling (CVS). Amnio, generally performed during the second trimester, involves inserting a needle into the amniotic fluid surrounding the fetus. The CVS probe removes a sample of the sac surrounding the fetus toward the end of the first trimester. Both carry a small risk of miscarriage.

So some people are choosing a different procedure that can be done as early as 10 weeks into the pregnancy and involves only drawing the mother’s blood. Three versions of the test have been available for a year, and although its convenience is appealing, according to a recent story by Kaiser Health News and the Washington Post, the decision to use it is complicated. The technology is not subject to regulation by the FDA, and the body of research about its accuracy is slim.

Thousands of the tests have been performed (at a cost of as much as $1,900) while they remain under review. Insurance companies don’t (yet) cover the cost, and because the test is so new, it’s unclear if, eventually, it will reduce miscarriages and the cost of complications by reducing the use of the more invasive tests. Will the tests, instead, increase costs because women who otherwise would pass on amniocentesis will opt for the blood draw?

According to the KHN/Post story, amnio is performed about 200,000 times every year in the U.S. In the Washington, D.C. area it costs about $2,500. As a standard test, it’s generally included in maternity coverage.

The new tests, typically, are offered only to women whose age and medical history put their fetus at a higher risk of having a chromosome abnormality; standard screening tests often are offered to all pregnant women.

The risks of having a fetus with a genetic disorder are greater if the mother:

  • is 35 or older;

  • has a history of miscarriages or children born with birth defects;

  • has a family history of genetic disease.

In addition, prenatal genetic testing is recommended if either parent has a family history of genetic disease or is known to be a carrier of a genetic disease.

The new test examines DNA fragments to see if a fetus carries three instead of the normal two copies of chromosomes 21, 18 or 13. An extra copy of 21, a called trisomy 21, is the main cause of Down syndrome; and extra copy of 18, called trisomy 18, causes a less common disorder, Edwards syndrome. Trisomy 13 is also known as Patau syndrome. All three are linked to serious developmental and medical problems.

Earlier this year, we wrote about the fate of babies handicapped by two of these conditions.

The test checks the mother’s blood levels of pregnancy-associated proteins and hormones and includes an ultrasound to see if there’s extra fluid at the back of the fetus' neck. The two procedures appear to detect about 9 in 10 cases of Down syndrome, and an even higher ratio of trisomies 18 and 13.

As the KHN/Post story says, 5 in 100 tests result in a false-positive—that is, showing a defective gene when there isn’t one. Only amniocentesis or CVS provide definitive answers.

Last month the American College of Obstetricians and Gynecologists said that the tests "should not be part of routine prenatal laboratory assessment." The organization hedged that statement, however, by noting that the tests can be offered to patients at increased risk of having a baby with a trisomy, but must be preceded by counseling about their limitations. Other professional groups, the National Society of Genetic Counselors and the International Society for Prenatal Diagnosis, agreed.

Given the lack of research proving the accuracy of the new test, all three organizations recommend that anybody who received a positive result undergo amniocentesis or chorionic villus sampling to verify the diagnosis.

So the question arises: If you have to confirm a diagnosis, should you have the test in the first place? Is the minimal risk of complication, in comparison to the greater, but still small risk of miscarriage with the standard, proven tests, worth it?

Maybe, especially if you are in the high-risk group for fetal genetic abnormalities. And although cost might be a factor, at this point, the companies who market the tests offer considerable subsidies. According the KHN/Post story, “[T]he most that women with insurance have to pay out of pocket is $235 for the MaterniT21 Plus test (list price $1,900) and $200 for Verifi (list price $1,200), even if their plan declines to cover the test. Both companies offer self-pay options for women without insurance: The price is $450 to $500 for MaterniT21 Plus and an ‘introductory price’ of $495 for Verifi.”

Insurance companies regularly review new technologies and treatments to make decisions about covering them. As the research file about the maternal blood tests grows, if the evidence of their accuracy is compelling, the tests eventually could be considered “standard.”

But that’s not their status today, and their worth must be determined on an individual case basis after frank and full discussion between the obstetrician and the parents.

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August 3, 2012

Genetic Disorders Study Shows Some Doctors Dehumanize Handicapped Babies

In a touching post on Neonatalresearch.org titled “Our children are not a diagnosis,” Dr. Keith Barrington, a neonatologist and researcher at Sainte Justine University Health Center in Montréal, responded to a recently published study in the journal Pediatrics about families with children who have trisomy 13 and 18.

Those are chromosomal disorders that cause significant neurodevelopmental disability. Fewer than 1 in 10 babies born with them survives to his or her first birthday. Trisomy 13 occurs in about 1 in 5,000 births. Trisomy 18 occurs in about 1 in 3,000 births, and predominantly among girls. Often, the disorders are treated with palliative measures only—that is, patients are made as comfortable as possible, but not given medical interventions.

Barrington was disturbed by the study’s results not because it challenged assumptions about life with such severely disabled children, but because of what the parents reported about the medical establishment’s attitude toward them.

Caveats about the study concern the fact that survey participants were found through Internet-based support groups and Facebook groups dedicated to trisomy 13 or 18. Surveys were emailed to parents of children born with full or partial forms of the chromosomal disorders. Clearly, they might not represent all parents of children with congenital disorders.

More than 330 parents completed the questionnaire. Some had been given a diagnosis before their babies were born, and others had not. So those with a prenatal diagnosis might have had the option to abort, but did not. The study included only parents whose babies had been born alive.

About half of the parents chose palliative care, one-quarter chose limited medical care after birth and one-quarter wanted full intervention. The length of the children’s survival didn’t differ much among all the families.

Among the study’s findings was that the parents who regretted their choices about the extent of medical intervention were overwhelmingly the ones who had chosen comfort care only. Also, the children did show signs of developmental progress, all were able to communicate with their parents at some level and most parents reported their child as being happy.

But most gratifying was that the parents overwhelmingly reported that the experience of living with their disabled child had made a positive contribution to family life, irrespective of how long their afflicted children lived. The fact that their disorder had created substantial financial stress was irrelevant.

Here’s the disturbing part: Although 2 in 3 of the families met at least one medical provider they described as helpful, most had been given misinformation, and many of those who had chosen active care felt that they were judged negatively by providers for making that decision. They reported that providers often referred to their baby in dehumanizing terms, calling him or her “it” or “a T18.” The parents told of interactions with providers who never learned their baby’s name, only the diagnosis.

To a parent, a child is a child. He or she might be brilliant, disabled, athletically gifted or socially awkward. He or she might be gorgeous or homely, able to engage or closed off in his or her own world. A child with problems is no less a human being than one fortunate enough to be perfectly healthy.

Although adults can make honest mistakes because of ignorance or discomfort, anyone with compassion makes an effort to connect with people not as lucky as they. A person who has chosen medicine as a profession and refers to another damaged person by diagnosis instead of name is less a human being than a wad of protoplasm in desperate need of re-education.
As Barrington concludes, the study highlights “the uniqueness of each of these children and the heterogeneity of condition and survival. …[W]e cannot be definite about the duration of survival or the capacities of an individual.”

The researchers concluded that parents who engage with parental support groups may discover a positive perspective about children with T13 and T18 that might stand in contrast with that of medical practitioners.

Here are Barrington’s guidelines for medical providers when talking with parents who have received a diagnosis, prenatal or postnatal of T-13 or T-18. If you’re a parent in this situation, and your providers fail to observe them, let them know of their deficiencies, and seek help from others who are not so afflicted.

1. Don’t say that this is “‘incompatible with life”; it’s callous, and it’s a lie.

2. Don’t say that if they survive “they will live a life of suffering;” parents do think that their child had more pain than others, but they also had many positive times, and their overall evaluation was positive.

3. Human beings are not vegetables. These children are conscious and interact, even if at very limited levels. Carrots don’t.

4. Don’t predict marital disharmony or family breakdown. There is no evidence that it occurs more when a family has a baby with severe impairments. Families find meaning in the lives of their children. Whether those lives are unimpaired or lived with severe impairments. Whether they are very short or not.

5. Don’t suggest that the child is replaceable. If parents initiate the idea that they can have another child, fine, but for you to suggest it indicates that you think this child is worthless.

6. Don’t say that there is nothing you can do for them. There is a lot you can do. Empathy and a positive attitude, finding resources, respite care and enabling appropriate medical care are among what you have to offer.

7. Be explicit about medical decision making; come to an agreement about the limits of medical interventions (if you can’t, then find them another doctor who can); be open to changing the plan as time goes on.

8. Refer to the child by name if there is one. Some doctors ask prospective parents if they have chosen a name, which demonstrates recognition that a fetus has potential as a human being.

9. Recognize that these babies will be loved, cared for and will leave a positive mark on their families.

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May 2, 2011

New York creates fund for babies with brain damage from malpractice errors

New York state has created a new fund to pay medical expenses for infants who are neurologically damaged as a result of malpractice and other medical mistakes, but opponents say it means families will have to fight with state authorities to obtain treatments as their children age.

The fund, which is due to go into effect on Oct. 1, 2011, allows medical costs to be provided on an annual basis to injured parties. Parents or guardians can still pursue medical malpractice actions on the basis of emotional distress and other losses.

Between 150 and 200 babies are expected to qualify annually for the new fund, according to Jason Helgerson, Gov. Andrew Cuomo's chief Medicaid reform adviser. Participation in the fund is mandatory for those seeking either Medicaid recompensation or filing medical malpractice suits.

Helgerson says the fund will offer a more accurate means of providing care for injured infants because it isn’t subject to inaccurate estimates made by judges and juries trying to arrive at an accurate figure for health-care costs under the current malpractice award system.

But opponents of the fund maintain that the system was championed by health-care providers and will subject the families of neurologically damaged infants to on-going battles with the state for treatments as their children age.

Under the new statute, the fund describes "birth-related neurological injuries" as "an injury to the brain or spinal cord of a live infant caused by the deprivation of oxygen or mechanical injury occurring in the course of labor, delivery or resuscitation or by other medical services provided or not provided during delivery admission that rendered the infant with a permanent and substantial motor impairment or with a developmental disability."

Medical care will be decided on a case-by-case basis. In the event the fund is reduced to 20 percent or less of its annual size, the law contains a default stipulation allowing suits to be brought for medical expenses.

The establishment of the fund was included in a host of recommendations by a Medicaid Redesign Team (MRT) appointed by Gov. Cuomo to halt escalating Medicaid costs. Another recommendation from the task force called for capping noneconomic damages in medical malpractice cases at $250,000. That proposal was fiercely opposed and eventually scrapped.

Source: New York Law Journal

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March 30, 2011

Brain damaged boy’s family accepts $8.5M malpractice settlement

The family of a severely brain-damaged child in Bayonne, New Jersey will be paid $8.5 million to settle a medical malpractice lawsuit brought against the former owners of the Bayonne Medical Center and three medical workers. Attorneys representing the former owners of the hospital and the family settled the multimillion-dollar lawsuit after five days of testimony.

According to court records and trial testimony, Emily Ordonez, then 32, went to the hospital at 1:30 a.m. on Aug. 14, 2005 with labor pangs. All prenatal tests pointed to a normal healthy baby. But at 9:32 a.m., the heart monitor attached to her abdomen showed the baby's heart suddenly plunged from 140 beats per minute to the dangerously low level of 60 beats per minute.

Phone records show that the labor and delivery room nurse waited almost half an hour before calling the attending obstetrician and when he arrived from Staten Island 22 minutes later, he waited until 10:55 a.m. to start an emergency C-section.

The reason for the baby's low heart rate was that his umbilical chord was compressed and the fetus was starved for oxygen. The delays, therefore, left Jose Ordonez, now 5, with permanent brain damage and needing full-time care. The boy is prone to seizures, cannot see, walk, or hold his head up by himself, and he must be fed through a straw.

Besides the hospital, the parents sued the obstetrician, the delivery room nurse, and her supervisor.

Source: The Jersey Journal

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January 19, 2011

Dangerous chemicals found in virtually all pregnant women, study says

Virtually all pregnant women in the U.S. are exposed to multiple and varied chemicals – some long banned, others currently used – that may harm the fetus during sensitive periods of development, according to a new study by researchers at the University of California San Francisco.

The study found that the bodies of virtually all pregnant women in the U.S. carry multiple chemicals, including some banned since the 1970s and others used in common products such as non-stick cookware, processed foods and personal care products.

The researchers used data from the National Health and Nutritional Examination Survey (NHANES) to determine whether 163 chemicals were in the blood or urine of 268 U.S. pregnant women sampled between 2003 and 2004.

According to the study - the first to look at a broad range of chemicals specifically in pregnant women - 99% to 100% of pregnant women carried polychlorinated biphenyls (PCBs), organochlorine pesticides, perfluorinated compounds (PFCs), phenols, polybrominated diphenyl ethers (PBDEs), phthalates, polycyclic aromatic hydrocarbons (PAHs) and perchlorate.

The health risks for mother and child associated with exposure to this many chemicals at detectable levels is not known. Low-level exposures to some of these chemicals during the prenatal period can cause long-term health effects, including birth defects, reproductive problems and cancer.

Surprisingly, DDE – a breakdown product of the long-banned DDT pesticide – was found in every woman and at some of the highest levels measured for any of the chemicals. Other chemicals found at high levels include perfluoroctane sulfonic acid (PFOS), which is found in food packaging and non-stick cookware; triclosan, found in antibacterial soap and products; and mono-ethyl phthalate (MEP), found in cosmetics and fragrances. Animal or human studies show all of these chemicals can interfere with the endocrine system.

In addition, many of the pollutants measured in the study can pass through the placenta from the mother to the developing fetus and have been measured in cord blood, fetal blood and amniotic fluid.

Source: Environmental health News

You can view the original report here.

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February 18, 2009

Growing Consensus on Genetic Risks of IVF

In vitro fertilization has generally been considered safe since the first IVF baby was born more than 30 years ago. But recent studies unveil a number of risks that couples considering the procedure should be aware of, reports Gina Kolata of the New York Times.

These IVF-related risks may include increased risk of low birth weight and premature birth, as well as severe birth defects like “a hole between the two chambers of the heart, a cleft lip or palate, an improperly developed esophagus, and a malformed rectum.” Studies indicate that IVF possibly give rise to abnormal genetic expression patterns that are responsible for these genetic disorders.

In addition to the more common birth defects, children born by IVF are also suspected to be at greater risk for other genetic disorders that are much rarer: Beckwith-Wiedemann syndrome (children with this syndrome are much more predisposed to childhood cancers of kidney, liver or muscle) and Angelman syndrome (severe mental retardation, motor defects and inability to speak).

Although certain risks of in vitro fertilization are beginning to surface, no finding is conclusive yet – these are preliminary studies that show “comparative risks,” but no “absolute risks” are known yet. Researchers are still in the process of discovering exactly what the risks are and what can be done to minimize them. More research reports will be available as scientists track the development and growth of babies born by IVF, and couples interested in fertility treatment should educate themselves about the risks in order to make informed decisions.

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August 16, 2008

Highway Proximity and Infant Health

A recent Canadian study shows that pregnant women who live near highways are more likely to give birth to premature or low-birth-weight infants--but only among wealthy mothers. Pollution from the highways is what causes these effects, researchers say. The reason why these results are not found among poorer mothers is, says lead researcher Dr. Melissa Generoux, because poorer mothers have so many more risk factors that this particular single factor has less of an obvious effect. Wealthier mothers, safe from other risks, are more likely to be noticeably affected by this one factor.

Expecting mothers are bombarded with advice and even lectures on the minutest details of what they consume during pregnancy, and are often overcome with anxiety over these matters. Yet they and their children are still powerfully affected by factors outside their personal control, such as the level of pollution near residential areas.

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April 17, 2008

Child Wins Birth Defect Settlement

The migrant worker parents of a 3-year-old Florida boy have won a significant settlement from Ag-Mart Produce, arguing that their child's birth defects were caused by exposure to pesticides in Ag-Mart's fields. This is enough to provide for the boy's expenses for the rest of his life, as the plaintiff's lawyer says. From the article:

Terms of the settlement have been kept private, but the family's attorney, Andrew Yaffa, said the money is "significant." Carlitos will not have to worry about medical care the rest of his life.

"Hopefully, someday, some way through medical research, they will be able to equip him with a wheelchair so he can gain some independence," Yaffa said.

Carlitos' parents said the boy is representative of many more children affected by pesticides, but their families are afraid to come forward. Yaffa credited the family for exposing deplorable conditions in farm work and creating changes that will benefit others for years to come.

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