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An article about "playing God with birth defects" and a letter in response...
Article
Letter
Playing God With Birth Defects in the Nursery
By BARRON H. LERNER, M.D.
What is best for babies born with a severe neurological condition? Two doctors thought they knew. At a series of medical meetings in the 1970's, Dr. John Lorber argued that they should be left to die. Dr. John M. Freeman said they should be saved.
The neurological defect in question, meningomyelocele, has since declined in incidence. But the issues that the doctors debated remain highly relevant in modern neonatal intensive-care units.
Meningomyelocele referred to a protrusion of the spinal cord through the protective vertebrae of the back. Infants with this condition suffered from a series of problems, including permanent paralysis of the legs, swelling of the head, urinary incontinence and meningitis, an infection of the tissues surrounding the spinal cord.
Meningomyelocele was the most severe form of spina bifida, a spectrum of conditions in which the vertebrae do not close properly. All doctors agreed that in mild cases, with minimal neurological damage, the defect should be closed. But more advanced cases raised genuine questions about whether severely handicapped infants should be saved.
Dr. Lorber was a renowned pediatrician at Sheffield Hospital in England, which had pioneered many of the advances in treating meningomyelocele. These included inserting a shunt to drain fluid from the head into the abdomen, possibly preventing brain damage.
But in a 1971 article, Dr. Lorber argued that to spare children and their families prolonged suffering, the most severe cases should not undergo treatment. In a study of 524 patients, he had found that half the children died despite maximum treatment. Most who lived had severe mental or physical defects, or both. Only 7 percent had a life consistent with "self-respect, earning capacity, happiness, and even marriage."
In advocating "nontreatment," Dr. Lorber anticipated medicine's future concerns about quality of life: just because surgeons could fix things did not mean they necessarily should. And that was what he told the parents of severely affected children.
Dr. Freeman respectfully disagreed. A pediatric neurologist at Johns Hopkins University, he believed that recent innovations in treatment - the shunt, antibiotics, kidney surgery and better rehabilitation - made treatment almost always mandatory.
True, he acknowledged, roughly one-fifth of children wound up with severe mental retardation, but it was difficult to predict which ones. He was also profoundly uncomfortable with the practice of putting children in the corner of the nursery to die.
Children with meningomyelocele at Johns Hopkins usually underwent immediate surgical repair of their backs, followed by dozens of subsequent procedures.
As time progressed, Dr. Lorber and Dr. Freeman found themselves making fewer independent decisions for their patients. By the late 1970's, the notion of patient autonomy had taken hold. In the case of birth defects, the parents had become the appropriate decision makers.
Accompanying this development was the rise of the disability rights movement, which argued that disabled children and adults were not inferior. Whether it was medical treatment or access to buildings, the disabled were entitled to the same opportunities as all others.
Parents of children with meningomyelocele - and, as they grew older, those affected themselves - became vocal spokesmen for the value of life. "If a child has a chance to survive," asked one mother on an Internet forum, "who is to play God and say that they will not have a meaningful life?"
Dr. Lorber, one of the first physicians to take an interest in the lives of spina bifida patients, was vilified in retrospect. His terminology, suggesting that certain children be "selected" for nontreatment, raised uncomfortable reminders of the Holocaust. More charitably, a man with spina bifida wrote on the Internet that Dr. Lorber was well intentioned but wrong.
Dr. Freeman was also not spared the revenge of hindsight. Even though his policy of aggressive surgery had become standard by the 1990's, he received a surprise when he interviewed two of his "favorite" patients, women in their 20's who were college graduates with steady jobs. Reflecting on their lives spent in wheelchairs with limited social contacts and no hope of marriage, they told Dr. Freeman, as he recalled, "We wish we'd never been born."
Today, the use of folic acid in pregnancy and the availability of abortions have made meningomyelocele rare, affecting fewer than 1 out of 1,000 live children.
But the issues raised in the 1970's persist, with the treatment of other birth defects and infants of very low birth weight. New technologies can ensure the survival of such children, but many will have severe developmental problems, like learning disabilities, behavioral disorders and motor skill deficits.
How aggressively should such infants be treated? Studies hope to answer that question, providing parents and doctors with the type of predictive data that Dr. Lorber generated. But as Dr. Freeman learned, each case is different. If we want to know whether saving particular children was the right choice, we may need to wait 20 years and ask them.
Response
To the Editor:
As a person with spina bifida, I wish the author of "Playing God With Birth Defects in the Nursery" (Essay, June 14) had used his bully pulpit to educate women of child-bearing age about the importance of a daily dose of 400 micrograms of folic acid, which can reduce the risk of a spina bifida pregnancy as much as 70 percent.
Spina bifida is the most common permanently disabling birth defect in the United States. Research is limited and woefully underfinanced. With advances in medical technology, an integrated network of services and the hope of more research funds, I am loath to dismiss the value of anyone living with spina bifida.
Douglas Sorocco
Washington
The writer is chairman of the Spina Bifida Association of America.
Letter
Playing God With Birth Defects in the Nursery
By BARRON H. LERNER, M.D.
What is best for babies born with a severe neurological condition? Two doctors thought they knew. At a series of medical meetings in the 1970's, Dr. John Lorber argued that they should be left to die. Dr. John M. Freeman said they should be saved.
The neurological defect in question, meningomyelocele, has since declined in incidence. But the issues that the doctors debated remain highly relevant in modern neonatal intensive-care units.
Meningomyelocele referred to a protrusion of the spinal cord through the protective vertebrae of the back. Infants with this condition suffered from a series of problems, including permanent paralysis of the legs, swelling of the head, urinary incontinence and meningitis, an infection of the tissues surrounding the spinal cord.
Meningomyelocele was the most severe form of spina bifida, a spectrum of conditions in which the vertebrae do not close properly. All doctors agreed that in mild cases, with minimal neurological damage, the defect should be closed. But more advanced cases raised genuine questions about whether severely handicapped infants should be saved.
Dr. Lorber was a renowned pediatrician at Sheffield Hospital in England, which had pioneered many of the advances in treating meningomyelocele. These included inserting a shunt to drain fluid from the head into the abdomen, possibly preventing brain damage.
But in a 1971 article, Dr. Lorber argued that to spare children and their families prolonged suffering, the most severe cases should not undergo treatment. In a study of 524 patients, he had found that half the children died despite maximum treatment. Most who lived had severe mental or physical defects, or both. Only 7 percent had a life consistent with "self-respect, earning capacity, happiness, and even marriage."
In advocating "nontreatment," Dr. Lorber anticipated medicine's future concerns about quality of life: just because surgeons could fix things did not mean they necessarily should. And that was what he told the parents of severely affected children.
Dr. Freeman respectfully disagreed. A pediatric neurologist at Johns Hopkins University, he believed that recent innovations in treatment - the shunt, antibiotics, kidney surgery and better rehabilitation - made treatment almost always mandatory.
True, he acknowledged, roughly one-fifth of children wound up with severe mental retardation, but it was difficult to predict which ones. He was also profoundly uncomfortable with the practice of putting children in the corner of the nursery to die.
Children with meningomyelocele at Johns Hopkins usually underwent immediate surgical repair of their backs, followed by dozens of subsequent procedures.
As time progressed, Dr. Lorber and Dr. Freeman found themselves making fewer independent decisions for their patients. By the late 1970's, the notion of patient autonomy had taken hold. In the case of birth defects, the parents had become the appropriate decision makers.
Accompanying this development was the rise of the disability rights movement, which argued that disabled children and adults were not inferior. Whether it was medical treatment or access to buildings, the disabled were entitled to the same opportunities as all others.
Parents of children with meningomyelocele - and, as they grew older, those affected themselves - became vocal spokesmen for the value of life. "If a child has a chance to survive," asked one mother on an Internet forum, "who is to play God and say that they will not have a meaningful life?"
Dr. Lorber, one of the first physicians to take an interest in the lives of spina bifida patients, was vilified in retrospect. His terminology, suggesting that certain children be "selected" for nontreatment, raised uncomfortable reminders of the Holocaust. More charitably, a man with spina bifida wrote on the Internet that Dr. Lorber was well intentioned but wrong.
Dr. Freeman was also not spared the revenge of hindsight. Even though his policy of aggressive surgery had become standard by the 1990's, he received a surprise when he interviewed two of his "favorite" patients, women in their 20's who were college graduates with steady jobs. Reflecting on their lives spent in wheelchairs with limited social contacts and no hope of marriage, they told Dr. Freeman, as he recalled, "We wish we'd never been born."
Today, the use of folic acid in pregnancy and the availability of abortions have made meningomyelocele rare, affecting fewer than 1 out of 1,000 live children.
But the issues raised in the 1970's persist, with the treatment of other birth defects and infants of very low birth weight. New technologies can ensure the survival of such children, but many will have severe developmental problems, like learning disabilities, behavioral disorders and motor skill deficits.
How aggressively should such infants be treated? Studies hope to answer that question, providing parents and doctors with the type of predictive data that Dr. Lorber generated. But as Dr. Freeman learned, each case is different. If we want to know whether saving particular children was the right choice, we may need to wait 20 years and ask them.
Response
To the Editor:
As a person with spina bifida, I wish the author of "Playing God With Birth Defects in the Nursery" (Essay, June 14) had used his bully pulpit to educate women of child-bearing age about the importance of a daily dose of 400 micrograms of folic acid, which can reduce the risk of a spina bifida pregnancy as much as 70 percent.
Spina bifida is the most common permanently disabling birth defect in the United States. Research is limited and woefully underfinanced. With advances in medical technology, an integrated network of services and the hope of more research funds, I am loath to dismiss the value of anyone living with spina bifida.
Douglas Sorocco
Washington
The writer is chairman of the Spina Bifida Association of America.
no subject
I didn't know folic acid could do that. Wow. it can do everything. :P
Another easy thing to keep Spina Bifida down is not have kids when you're past 35 or so (adopt! hello! please!). Generally, the older the mom is, the worse chances the kids have.
no subject
no subject
Can't hurt, and can help. Also, if you see 'women's vitamins' which usually have extra calcium and iron, they usually have extra folic acid now too. My husband's 'men's vitamins' have added lycopene, which apparently is linked with prostate cancer prevention.
I'm suprised more women don't know about folic acid. It is simple and helps so much.
Also, if I recall correctly, research supported by the March of Dimes brought out that folic acid info.
no subject
no subject
Wow, I guess it IS added:
http://cerhr.niehs.nih.gov/genpub/topics/folic_acid-ccae.html
The FDA (FDA February 29, 1996) also stated:
The U.S. Public Health Service (PHS) recommended in September 1992 that all women of childbearing age consume 400 micrograms (ug) of folic acid daily to reduce their risk of having a pregnancy affected with spina bifida or other neural tube defects.
In keeping with the recommendations of PHS and the FDA Food Advisory Committee called to study these issues, the Food and Drug Administration is requiring that folic acid be added to specific flour, breads and other grains. These foods were chosen for fortification with folate because they are staple products for most of the U.S. population, and because they have a long history of being successful vehicles for improving nutrition to reduce the risk of classic nutrient deficiency diseases.
These fortified foods include most enriched breads, flours, corn meals, rice, noodles, macaroni and other grain products.
no subject
I like the basics (VitD in milk, Iodine in Salt), not for myself (I get around, so to speak), but for kids.
Right now, my nephew is so picky, and the SEKRET vitamin-y-things keep him from keeling over. or something.
Those, and Flintstones Kid's vitamins. I wish I had me some Flintstones Adult vitamins. :/
no subject
And you nkow what I love more than Flintstones? Gummy vitamins. *I* like them.
no subject
They also make bubblegum ones too now.
Why are they making all of the GENIUS things now? *whine*
no subject
People in areas where they don't drink much milk, but eat a lot of dark, leafy greens (spinach, most lettuces (not iceberg!), dandelion, collard greens, that sort of thing) have less osteoporosis than in the US, where we *do* drink a lot of milk and eat dairy products. That's why the WHO advocates a much smaller RDA of calcium than the FDA - their studies focus on people who don't get most of their calcium from milk and supplements. Sure, milk is full of calcium, but the evidence shows that the calcium in milk is, for adult humans, not very bioavailable.
no subject
Y'know,
Hey, I'd vote for you :)
no subject
:D
(even if we did argue, but that was more of one of those language misundunderstandings. Stupid internets.)
no subject
And then I got involved in that whole union thing in Sheepshead Bay, and am constantly on with 311 and 'walking the sites' as our civic association leader suggested we do (looking for violations) and just keep busy and involved writing and calling and faxing...but have to try to keep my writing neutral.
Funny thing is this one article that I got chided for writing as too pro union was rewritten by me, doing the additional work my editor wanted, and the additional research made the owners of the place look WORSE not better! Came out more pro-union than it would have if he let it go. :D (But at least he was able to print it knowing we covered everything.)
no subject
It's like the Witch Hazel of 'vitamin-like-thingies'.
no subject
I didn't know folic acid could do that. Wow. it can do everything. :P
Another easy thing to keep Spina Bifida down is not have kids when you're past 35 or so (adopt! hello! please!). Generally, the older the mom is, the worse chances the kids have.
no subject
no subject
Can't hurt, and can help. Also, if you see 'women's vitamins' which usually have extra calcium and iron, they usually have extra folic acid now too. My husband's 'men's vitamins' have added lycopene, which apparently is linked with prostate cancer prevention.
I'm suprised more women don't know about folic acid. It is simple and helps so much.
Also, if I recall correctly, research supported by the March of Dimes brought out that folic acid info.
no subject
no subject
Wow, I guess it IS added:
http://cerhr.niehs.nih.gov/genpub/topics/folic_acid-ccae.html
The FDA (FDA February 29, 1996) also stated:
The U.S. Public Health Service (PHS) recommended in September 1992 that all women of childbearing age consume 400 micrograms (ug) of folic acid daily to reduce their risk of having a pregnancy affected with spina bifida or other neural tube defects.
In keeping with the recommendations of PHS and the FDA Food Advisory Committee called to study these issues, the Food and Drug Administration is requiring that folic acid be added to specific flour, breads and other grains. These foods were chosen for fortification with folate because they are staple products for most of the U.S. population, and because they have a long history of being successful vehicles for improving nutrition to reduce the risk of classic nutrient deficiency diseases.
These fortified foods include most enriched breads, flours, corn meals, rice, noodles, macaroni and other grain products.
no subject
I like the basics (VitD in milk, Iodine in Salt), not for myself (I get around, so to speak), but for kids.
Right now, my nephew is so picky, and the SEKRET vitamin-y-things keep him from keeling over. or something.
Those, and Flintstones Kid's vitamins. I wish I had me some Flintstones Adult vitamins. :/
no subject
And you nkow what I love more than Flintstones? Gummy vitamins. *I* like them.
no subject
They also make bubblegum ones too now.
Why are they making all of the GENIUS things now? *whine*
no subject
People in areas where they don't drink much milk, but eat a lot of dark, leafy greens (spinach, most lettuces (not iceberg!), dandelion, collard greens, that sort of thing) have less osteoporosis than in the US, where we *do* drink a lot of milk and eat dairy products. That's why the WHO advocates a much smaller RDA of calcium than the FDA - their studies focus on people who don't get most of their calcium from milk and supplements. Sure, milk is full of calcium, but the evidence shows that the calcium in milk is, for adult humans, not very bioavailable.
no subject
Y'know,
Hey, I'd vote for you :)
no subject
:D
(even if we did argue, but that was more of one of those language misundunderstandings. Stupid internets.)
no subject
And then I got involved in that whole union thing in Sheepshead Bay, and am constantly on with 311 and 'walking the sites' as our civic association leader suggested we do (looking for violations) and just keep busy and involved writing and calling and faxing...but have to try to keep my writing neutral.
Funny thing is this one article that I got chided for writing as too pro union was rewritten by me, doing the additional work my editor wanted, and the additional research made the owners of the place look WORSE not better! Came out more pro-union than it would have if he let it go. :D (But at least he was able to print it knowing we covered everything.)
no subject
It's like the Witch Hazel of 'vitamin-like-thingies'.
no subject
(Anonymous) 2006-01-16 05:33 pm (UTC)(link)no subject
no subject
(Anonymous) 2006-01-16 05:33 pm (UTC)(link)no subject