Q: (From longtime Albuquerque pediatrician and friend Scott Obenshain): Lance, your article about advances (in pediatric research) was heartwarming.
The one missing breakthrough in the American Academy of Pediatrics’s and your assessment is the prevention of Neural Tube Defects (NTDs). With the fortification of flour in 1997 – this research was done by a pediatrician at the Centers for Disease Control and Prevention, Godfrey Oakley – innumerable cases of NTDs have been prevented.
A big savings not only in the U.S., but Canada and many other countries including Saudi Arabia. Dr. Oakley estimates that since the randomized control trial proving the efficacy of folate in preventing NTDs, unfortunately over 5 million children have been born with what could have been preventable NTD. He’d call it Public Health Malpractice.
A: I remember worrying over and over when my wife was pregnant with our children: “I hope the baby doesn’t have spina bifida!” In my pediatric residency and in my practice I had seen many children with spina bifida, a condition where the lower part of the spine does not close properly, leading to a variable amount of damage to the nerves going to the legs, the bladder and the lower intestine.
Although children with spina bifida were never very numerous, the variety of problems they had – with their inability to walk or control their urination or stooling, we saw them frequently.
Spina bifida is, if anything, the less serious of the two types of neural tube defects. The other, anencephaly, is incompatible with life for more than a few days. The parents are devastated, but it is unlikely that the infant has the ability to sense pain in his very malformed brain.
Both spina bifida and anencephaly result from improper closure of the neural tube. My basic memory of medical school embryology reminds me that the neural tube is a structure that very early in fetal life determines the structure of the brain and spinal cord.
Originally open from end to end, it is like a flattened sleeve with a double-pull zipper. The zipper starts in the middle and zips upward, forming the brain, and downward, completing the formation of the spinal cord. Failure to finish “zipping” results in anencephaly if it was the top-end failure, or spina bifida, if the lower end closure is incomplete.
Oakley and many others were looking for causes of NTDs back in the 1990s. A British researcher, Sir Nicholas Wald, had performed an experiment in seven countries, supplementing the diet of women with folate (also called folic acid, which is a B vitamin) and had shown conclusively that women whose diet was supplemented with folate had many fewer infants with NTDs.
The experiment is called a randomized control trial because women are randomly assigned to either “experimental treatment,” in this case folate supplements or to “usual treatment,” no such supplementation, usually done by giving a placebo pill that looks like the real treatment. Then the outcome, NTDs, are counted up in the two groups.
The name of the group Fortified Flour Institute tells the story at hffinetwork.org. The Persian Gulf country of Oman was the first to require that folate be added to all fortified flour in 1996, and saw a prompt reduction of 70 percent in NTDs. What a breakthrough! Oakley and others led a study in China that demonstrated a 90 percent reduction in some places. Results have not been as dramatic in the U.S. since we followed Oman’s lead in 1997, but a 24 percent reduction in NTDs here is a real public health triumph.
Because some women may not eat enough fortified flour products to get enough folate, it is now recommended that all women of child-bearing age take a multivitamin containing 400 micrograms (for those of us used to pounds and ounces, that’s just over one one-hundred-thousandth of an ounce!) of folate daily.
Amazing what just the tiniest dab of an important substance can do! The folate may also prevent certain heart defects.
Because so many pregnancies occur without pre-planning and the folate is vital prior to most women knowing they’re pregnant, the recommendation for daily folate applies to all women who might become pregnant.
Advances in medical science have made spina bifida easier on patients as well. Consultations with experienced urologists, orthopedists, physical therapists, gastroenterologists, and social workers will improve chances for an unfettered life. I remember one of my patients with spina bifida became a national star in wheelchair basketball and, last I knew, was happily off to college.
How much better, though, to not have to head off to college in a wheelchair, to be one of the 22,000 children saved by folate every year around the world from a life hampered by disability! Thanks, Dr. Obenshain, and thanks, Dr. Oakley and Sir Wald.