Sunday, March 30, 2008

Elie's Story by Holly Smith (about Velo-Cardio-Facial Syndrome)

The post below is written by our friend, Maryland-based writer Holly Smith, about her daughter. We offer it to readers who want to learn more about 22q11 microdeletion, which is the most common genetic abnormality after Down syndrome. The picture below is of Elie two weeks after she had heart surgery. The picture at the bottom is of Elie at three and a half months, smiling on the couch.



Elie's Story by Holly Smith
Elie (rhymes with "jelly") was born Nov. 3, 2007. Shortly after birth, it was discovered that she had a potentially fatal heart defect, Truncus Arteriosus/pulmonary atresia, along with a genetic syndrome often called DiGeorge (but which is really a "22q11 microdeletion" syndrome called Velo-Cardio-Facial syndrome, or VCFS). It’s the second most-common genetic syndrome after Down syndrome, and can be so mild as to go undiagnosed into adulthood (typical hallmarks include heart defects, palate abnormalities, and characteristic—but not “abnormal”—facial features).

Elie was flown to Children’s National Medical Center in Washington, DC, and underwent an extensive open-heart surgery on Nov. 12, which was performed by Dr. Richard Jonas, a rock star in the field. Despite some drama, it was a total success, and she finally came home on Dec. 5.

Still, we don't know what the future holds as far as Elie's VCFS. There are 181 maladies associated with it, from "profound cognitive/social/physical problems" to "difficulty with math."

We DO know that, so far, we’ve been incredibly lucky. Elie is a wonderful, happy, outgoing baby, and she’s dodged tons of bullets: Her immune system, kidneys, and hearing are fine, her heart is strong, her suck/swallow reflex is perfect, and her blood-calcium levels are normal.

If issues crop up later, we'll deal with them then. What we won’t do, though, is be cowed by this diagnosis. We’re going to assume Elie is absolutely normal and can do everything her three older siblings can do unless or until we discover otherwise.


Some helpful websites:

VCFS Educational Foundation

Cincinnati Children’s Hospital

Children’s Hospital of Philadelphia, which has one of the world’s only VCFS clinics

Also, Yahoo has at least two groups devoted to VCFS/DiGeorge.

Friday, March 28, 2008

Exercising Baby

A floppy newborn who can’t lift her head or control her limbs may not seem like a candidate for exercise, but she is: exercising baby (most of which she’ll passively do herself) is exactly how she'll grow stronger and learn to coordinate movements. Parents today tend to keep their newborns in bucket-seat carriers much of the time, which not only deprives them of needed human contact, but prevents them from moving and developing their muscles.

Passive exercise is one of the first ways for the baby to develop balance, coordination, and muscle tone. When you’re carrying the baby and moving, the baby is not a floppy dead weight; they begin to hang on, they conform to your body, and they stabilize themselves (by contrast, imagine holding something truly floppy, like a large freezer bag half-full of water). Even in the first few days after birth, their muscles will try to hold them in a partial fetal position, arms and legs bent, and they will resist being stretched out to full length, as they do when the doctors measure them and assess neonatal (newborn) muscle tone.

You’ll notice that your baby, whether you're holding her or she’s lying down, is often moving: squirming her legs, flailing her little arms. In a word, exercising. But while she can and will do this exercise herself, doing baby sit-ups and baby gymnastics with her is fun for dads and good for babies.

For baby sit-ups, lie your baby on your lap with her feet against your stomach and her head on your knees, and let her grasp your thumbs while you grasp her forearms. Pull her gently up by the arms until she is in a sitting position. She’ll be shocked—her world view has changed! You can also move her arms back and forth to engage her movement and muscle response.

Here’s how we do baby gymnastics: Lie the baby on her back and hold onto her legs, alternate pumping them and tell her she is “running, running, running.” Then bicycle her legs and tell her she is “bicycling to work, bicycling home again.” Then push her leg gently to her head or to the opposite arm and say “One, two, one two,” as if you are counting the number of leg presses she’s doing. Then grab both legs and pull them off the ground and say, “Hoppy frog, hoppy frog, gymnastics.”

Maybe it’s the singsong voice, maybe the pure absurdity of movement, or maybe the sheer joy of exercise but we’ve never met a baby who didn’t love to work out in this way.

Wednesday, March 26, 2008

The World Eye Bookshop in Greenfield Massachusetts


Ordered 25 autographed copies of the book. We sent them. UPS delivered them soaking wet (and then denied our claim to be reimbursed for the cost of the shipping, to say nothing of the fact that they destroyed $398.75 worth of merchandise. We're disputing this with them. We'll keep you updated but, for the record, I've never had a problem like this with any other company. I highly recommend Fed Ex and the good old-fashioned post office.) We just sent out 25 more copies of the book and they should arrive in a week or two.

If you live in western Massachusetts and you're looking for a copy of the book, get an autographed one from the World Eye Bookshop! (if it's a gift though, don't ship it UPS).

The World Eye Bookshop
156 Main St
Greenfield, MA 01301
(413) 772-2186

Monday, March 24, 2008

James and Chris on JPR


Co-author James di Properzio and photographer Christopher Briscoe will be guests Tuesday, March 25th on Jefferson Public Radio's program, The Jefferson Exchange.

The program will run from 9 a.m. Pacific Time to 10:00 a.m. and you can listen to it on the internet as it broadcasts by clicking here.

Friday, March 21, 2008

Now, Let's Do The Science


It's fascinating to read about the latest and greatest scientific studies about pregnancy, children, and family life.

The only problem is, when you look past the headlines and read the substance of the studies, it's hard to find them entirely credible. Control groups are missing, the number of people studied is not statistically significant, or, despite what the media touts, any clear and credible cause and effect is not established.

We're going to the Council on Contemporary Families conference next month in Chicago and it will be interesting to get a chance to meet face to face some of the researchers conducting these studies and the academics interpreting them, and ask them some hard questions...

In the meantime, if you'd like to surf some new scientific studies, here are a few that have made the news lately (but read them with the caveat that what is presented here may be far from the "truth":


Good Marriages Make for Good Blood Pressure



Stressed out parents have sicker kids


Some moms quit cigarettes, alcohol, and pot use while pregnant but dads don't

Thursday, March 20, 2008

Wheat? Whole Wheat? What?!



Here's another article that first appeared in Pregnancy Magazine -- about why it's important for women to eat WHOLE GRAINS while pregnant.

Wheat? Whole Wheat? What?!
By Jennifer Margulis

When I was six months pregnant with my first child, I walked into our local bagel shop and asked if they had whole wheat bagels. The clerk behind the counter looked perplexed.

“No,” she said in a low, almost conspiratorial tone, “none of our products are made with wheat.”

Of course most of the bagels in that shop were made with wheat flour. But it is processed wheat flour that is white in color and many people, like the bagel clerk, don’t know that white flour and whole wheat flour actually come from the same grain. Pregnant women are now routinely advised to eat whole grains instead of processed grains but with this kind of widespread confusion, what’s a pregnant mama to do?

“It’s important for everybody to eat whole grains, at least three servings a day,” says Larry Lindner, executive editor of the Tufts University Health and Nutrition Letter and an expert on nutrition, “but it’s particularly important for pregnant women.” Whole grain food, like brown rice, whole wheat pasta, unpearled barley, whole millet and oats, is high in fiber, which can help alleviate constipation, a problem many pregnant women experience. In addition, since whole grains take longer to digest, pregnant women suffering from low blood sugar (also known as hypoglycemia) report fewer problems when they eat whole grains.

“Whole grains metabolize more slowly in your body,” explains Kristen Bernard, an obstetric nurse at Brattleboro Memorial Hospital in Brattleboro, Vermont, who counsels pregnant women on nutrition. “They reduce problems of high glucose that can come from eating refined grains. They have more fiber, which helps your intestines stay cleaner, and more vitamins and minerals.”

A kernel of wheat is made up of three components: the bran, the germ, and the endosperm. The bran, which contains most of the plant’s fiber, and the germ, which contains most of the nutrients, are both removed in the process of converting whole wheat flour into white flour. What is left is the starchy endosperm.



Because so many vital nutrients are taken out during processing, most food companies add back chemical nutrients into white flour, which is why the flour is called “enriched.” However, so many vital nutrients are lost in the refining process that enriched flour, though it sounds healthy, can never be as nutritious as whole grain flour. “Most of the nutrients that were there to begin with are never reinstated,” explains Lindner. “These include vitamin E, vitamin B6, pantothenic acid, magnesium, manganese, zinc, potassium, and copper.”

Another vital component of the grain is lost during processing: phytochemicals. Though it sounds like a tongue twister, phytochemical is simply a fancy term for chemicals found in plants that are not vitamins or minerals but that play a part in promoting good health. “Unlike vitamins and minerals, phytochemicals are not put into prenatal supplements,” explains Lindner, “but they are in whole grains.” In fact, researchers are just beginning to isolate these compounds-—there are literally thousands of them. While there is more to learn, one thing is certain: whole grains contain dozens of beneficial phytochemicals, processed grains do not.

When it comes to wheat products like bread, pasta, pie crusts, pretzels, cereal, muffins, cakes and cookies, pregnant consumers need to be savvy label readers. “Look on the ingredients list of the grain-based foods that you buy and make sure that the word ‘whole’ is in there,” says Lindner. “You want to see that word ‘whole’ and you want to see it first.”

But beware: even products that are advertised as “whole wheat” often are not made exclusively with whole wheat flour.

“Sometimes the big lettering on the front obfuscates the actual ingredients,” cautions Lindner.

For example, Maria & Ricardo’s Tortilla Factory, based in Quincy, Massachusetts, sells a package of ten-count “whole wheat” tortillas. A look at the ingredients, however, shows that these tortillas actually contain more white flour than whole wheat flour. Whole wheat flour is the third ingredient. It’s important to read labels carefully and remember that “wheat” does not mean “whole wheat.” If “wheat” is listed as one of the ingredients, you can be sure it means “white wheat”—the nutritionally devoid food that it is best to leave on the shelf.

According to Ruth Yaron, author of the bestselling book, Super Baby Food, the bottom line is money.

“The reason why everything is processed is because it’s cheaper,” insists Yaron, who explains that food manufacturers promote products made exclusively from white flour because white flour has a much longer shelf life than whole wheat flour. “White flour can stay on the shelf for months, even years, while whole grain flour gets rancid very quickly,” Yaron says.

I grew up eating white bread and white rice, like everybody else. It wasn’t until I was 29 years old, pregnant, and keenly interested in nutrition that I realized how much tastier and more interesting whole grains are to processed grains, especially if you find the right products. Whole wheat pasta with sardines is a gourmet Venetian specialty (and Bionaturae’s organic whole wheat pasta is so delicious that I’ve managed to convert even the most skeptical friends). But as Americans we have learned to prefer white bread, and many of us have never even tasted brown rice.

“When your body gets used to a healthy diet, you won’t like how you feel when you eat the processed stuff,” insists Yaron.

Since whole grain foods are so much healthier, making the switch while pregnant is not difficult. Start with a bowl of oatmeal or cold rolled oats in milk with raisins, flax seeds, and almond slivers for breakfast, use whole grain bread for your next lunch sandwich, or add a half a cup of barley or brown rice as a side dish to a dinner meal.

Grab and go products for healthier snacking during pregnancy, available at health food stores and in the natural foods aisle of conventional supermarkets, include brown rice cakes, brown rice crackers, graham crackers made with whole wheat flour, and multigrain pretzels.

Wednesday, March 19, 2008

What Labor's Really Like For Your Wife

A version of this post first appeared in Pregnancy Magazine.

What it’s Really Like
By Jennifer Margulis

When I was a freshman in college, my boyfriend told me that his mother said that giving birth to a baby was like trying to defecate a watermelon. Fifteen years and three children later, I would describe labor differently: for me it feels like being on a rollercoaster (a tortuous, nauseating, terrifying, neck-breaking rollercoaster) with no way off. Labor slams into your body and happens to it. My second labor was manageable but my third labor was so painful that after my son was born and before the pain receded (you really do forget—that’s why so many of us have more than one child), I would literally cry when I saw pregnant women. My tears were in empathy—I felt so sorry that in order for these pregnant mamas to hold their babies in their arms they'd first have to survive labor.

Here’s the real skinny on what it’s like to be pregnant and give birth, culled from interviews with women around the country. We’re giving it to you straight up with no cream and sugar. Warning: what you read here you won’t find in the advice books. If you don’t want to know the unfrosted truth, read no further.

What does it really feel like…

…when you're nauseous during pregnancy?


“It’s like being really, really carsick—like you’re studying a roadmap in the passenger seat and you only had barbeque potato chips and a 300-ounce Coke for lunch and you are simultaneously coming down with the stomach flu—only with a kind of bionic-smell thing thrown in for good measure.” Catherine Newman, Amherst, Massachusetts.

…when you feel your baby move?

“Being kicked wasn’t like being kicked from the outside. It felt like my stomach was a drum, like someone was playing on me but in a good way. We went to a Bonnie Raitt concert when I was eight months pregnant, and the music was really loud. Every time the baby moved, I wondered: ‘is he dancing? Writhing in pain because he doesn’t like the music?’” Faulkner Fox, Durham, North Carolina.

…when your water breaks?

“My water was broken by the doctor and it felt like she was trying to pick my nose via my cervix. I had read up on everything but amniotomy and the pain took me completely by surprise. I was lying in a hospital bed and it came out like a flood! It was the weirdest feeling, all this liquid just pouring out of me. I felt a bit humiliated, like I was peeing the bed in public, and very vulnerable. Afterwards, I felt almost weighted down without the water—almost like I was the one who had been floating around instead of Josie.” Lynn Spirelle, Portland, Oregon.

“In my second labor my water broke on its own and my delivery took all of three hours, versus 24 for the first. I was lying on my bed reading and heard a muted pop. I jumped off the bed and felt warm water trickle down my legs.” Vicky Mlyniec, Los Gatos, California.

“There was all this pressure in my crotch—literally down in my crotch since I was way along in labor and the bag of waters was bulging out of my cervix—and then WOOSH, a big gush. Like a popped blister or a really volcanic squeezed zit, except the water kept coming and coming for what felt like a full minute. And since I was contracting really rapidly by then, each contraction set off a mini-woosh of yet more water. I was having a conversation with my labor nurse, who was standing near my feet, and it was hard to talk to her because these rhythmic spurts of amniotic fluid were gushing out of my vagina.” Marrit Ingman, Austin, Texas.

…when you have a contraction?

“For me there were two kinds of contractions—the bearable kind that made me quiet, drawing in, trying to hold it together and keep the pain in its place; then there were the unbearable kind that made me scream and curse and wail with every ounce of my power, because that would take me outward away from what was happening inside, because it would equal it or balance it or shout it down. It is a wild jagged electric twisting and squeezing that feels bigger than you are and that completely overwhelms any other thought and sensation and it goes on and on and you have no idea when it’s going to end. It is like the worst stomach gas pain multiplied beyond insanity.” Marion Winik, Glen Rock, Pennsylvania.

“The pain was all over. From the bottom of my toes all the way up to the top of my head, my whole body was in a wave of pain. It was not isolated to my stomach or cervix. It’s not like being stabbed with a knife, which is what people had told me, it was a different kind of pain that you can’t even locate, or at least I couldn’t. It just seemed like it was the worst pain I ever felt, it was totally overwhelming. I had to work really hard to get through it.” Faulkner Fox, Durham, Durham, North Carolina.

…when you have back labor?

“I had 24 hours of back labor, and I felt like I was being torn in half by a very long and continuous explosion. I felt like I was giving birth to a wrecking ball. I felt like someone was performing a spinal tap with a jack hammer. And still—none of that really gets at it. It was like hanging onto a bucking mechanical bronco, and the trick was to hang on, even though you had no other choice, and there was some kind of faulty wiring, so the bronco was electrocuting you, but with that electrocution-feeling coming incessantly to a crescendo.” Catherine Newman, Amherst, Massachusetts.

…when you're in transition?

“I felt like a Civil War soldier receiving an amputation without anesthesia. I felt like I was being murdered. There was nothing anyone could do to help me.” Hilary Flower, St. Petersburg, Florida.

…when you're pushing?

“My body began ‘pushing’ before I even knew what was going on. I felt these endless agonizing intense contractions, like the worst menstrual cramps and the worst diarrhea feeling. I felt my uterus squeezing and squeezing, and then it was like the squeezing squeezed upon itself and it was one big giant throbbing contraction as Emi was eased downwards. I remember feeling like the lower half of my body was having an internal convulsion, and thinking that it felt like being swept into an undertow. I pushed for about ten minutes—intense pressure, intense sensation. It reminded me of the time I was eight years old and slammed my finger in the car door: I wasn’t looking, so all I felt was this strange tingling and numbness and an electric sense of something being wrong, and when I looked and saw my finger, the pain hit me—and then she was out.” Andrea Buchanan, Philadelphia, Pennsylvania.

“Everyone talked about how the pushing was going to be difficult. But it was less bad to me. I liked having something to do.” Faulkner Fox, Durham, North Carolina.

“With my first, with an epidural, there was a whole team of irritated people standing around my spread legs counting for me to hold my breath and push. I felt so inadequate and helpless, like I was doing it all wrong and I couldn't even feel the pushing for God’s sake. I felt like a failed athlete. With my second, at home, it was the opposite. As long as I put my chin down, this strange grunting/growling noise came out of my throat and my body pushed HARD. It as totally involuntary, my body just did its thing. No counting, no holding breath, just chin down and shazzam. It hurt like hell but at least the pushing part took care of itself.” Hilary Flower, St Petersburg, Florida.

…when the baby crowns?

“It was like a blistering acid bath washing over my genitals that felt really good! like I was getting some place after seven hours of pushing.” Ayun Halliday, Brooklyn, New York.

…when you hold your baby for the first time?

“Holding the baby for the first time is like realizing someone was missing for your entire life and here they are.” Gwendolyn Gross, Ridgewood, New Jersey.

“It was so great. We didn’t know what he was. My husband was saying, ‘he’s a boy,’ in this kind of amazed way. Like he’s saying, ‘he’s a human being.’ He was so happy. It was kind of surreal. He handed him to me and his head was really pointy. The holding was all combined with the looking at. You have this relationship with someone that you can’t see. It is so amazing to see who was this person who I had this relationship with for so long.” Faulkner Fox, Durham, North Carolina.

…when you're recovering from labor?

“Honestly, I hadn’t understood that the days—and weeks—after the birth would be such a mess. Even though you know, abstractly, that you’ll need to get up in the night and nurse the baby and change its diaper, I think that most of us secretly picture sun-drenched days spent dressing the baby in one charming Swedish cotton outfit after another. Instead the baby is clothed haphazardly, if at all, because every 11 seconds you or the baby is drenched with poop (the baby’s), milk (yours), spit up (the baby’s), sweat (yours), blood (yours), or pee (this could be anybody’s). The things I was least prepared for was the sweating. You go to bed one night with your fat, swollen pregnancy ankles, and you wake up the next morning and the ankles are gone—but your pajamas and your sheets are soaked with sweat.” Catherine Newman, Amherst, Massachusetts

“It was like recovering from a mountain expedition, all that satisfaction of completion, all that pride, only the pictures are much better, someone’s waking you up every hour at night, and your blister-equivalents are in unmentionable places.” Gwendolyn Gross, Ridgewood, New Jersey.

Tuesday, March 18, 2008

Sex is Good for Dads

Thanks to our friends at GreatDads.com for pointing out an article in a recent issue of Men's Health about how HEALTHY it is to have sex. We've long suspected as much and isn't it nice to have hard science (as if there is such a thing) to back it up?

Here are the "facts" (tell them to your wife next time she has a headache):

11% decrease in the risk of prostate cancer if you have 8-12 orgasms per month.

118 calories burned by a 180 pound man during one hour of foreplay.

50% DECREASE in risk of dying of heart disease if you have at least 2 orgasms per week.

30% increase in immunity if you have intercourse more than twice a week.

143 muscles required to have sex.

And while you're thinking about all the glorious benefits to sexual intimacy and browsing Men's Health, you can also read such inspiring articles as 9 hard-and-fast rules for awe-inspiring erections.

Monday, March 17, 2008

Sexually Transmitted Diseases Among American Teens

That tiny baby daughter that you are holding in your arms will one day be a teenager. According to an article in the AP, a new study shows that one in four teenage girls (more than 3 million teens) has an STD.

Study shows 1 in 4 teen girls has an STD

By Lindsey Tanner
The Associated Press
March 11, 2008

CHICAGO — At least one in four teenage girls nationwide has a sexually transmitted disease, or more than 3 million teens, according to the first study of its kind in this age group.

A virus that causes cervical cancer is by far the most common sexually transmitted infection in teen girls aged 14 to 19, while the highest overall prevalence is among black girls — nearly half the blacks studied had at least one STD. That rate compared with 20 percent among both whites and Mexican-American teens, the study from the federal Centers for Disease Control and Prevention found.

About half of the girls acknowledged ever having sex; among them, the rate was 40 percent. While some teens define sex as only intercourse, other types of intimate behavior including oral sex can spread some infections.

For many, the numbers likely seem "overwhelming because you're talking about nearly half of the sexually experienced teens at any one time having evidence of an STD," said Dr. Margaret Blythe, an adolescent medicine specialist at Indiana University School of Medicine and head of the American Academy of Pediatrics' committee on adolescence.

But the study highlights what many doctors who treat teens see every day, Blythe said.

Dr. John Douglas, director of the CDC's division of STD prevention, said the results are the first to examine the combined national prevalence of common sexually transmitted diseases among adolescent girls. He said the data, from 2003-04, likely reflect current rates of infection.

"High STD rates among young women, particularly African-American young women, are clear signs that we must continue developing ways to reach those most at risk," Douglas said.

The CDC's Dr. Kevin Fenton said given that STDs can cause infertility and cervical cancer in women, "screening, vaccination and other prevention strategies for sexually active women are among our highest public health priorities."

The study by CDC researcher Dr. Sara Forhan is an analysis of nationally representative data on 838 girls who participated in a 2003-04 government health survey. Teens were tested for four infections: human papillomavirus, or HPV, which can cause cervical cancer and affected 18 percent of girls studied; chlamydia, which affected 4 percent; trichomoniasis, 2.5 percent; and herpes simplex virus, 2 percent.

Blythe said the results are similar to previous studies examining rates of those diseases individually.

The results were prepared for release Tuesday at a CDC conference in Chicago on preventing sexually transmitted diseases.

HPV can cause genital warts but often has no symptoms. A vaccine targeting several HPV strains recently became available, but Douglas said it likely has not yet had much impact on HPV prevalence rates in teen girls.

Chlamydia and trichomoniasis can be treated with antibiotics. The CDC recommends annual chlamydia screening for all sexually active women under age 25. It also recommends the three-dose HPV vaccine for girls aged 11-12 years, and catch-up shots for females aged 13 to 26.

The American Academy of Pediatrics has similar recommendations.

Douglas said screening tests are underused in part because many teens don't think they're at risk, but also, some doctors mistakenly think, '"Sexually transmitted diseases don't happen to the kinds of patients I see.'"

Blythe said some doctors also are reluctant to discuss STDs with teen patients or offer screening because of confidentiality concerns, knowing parents would have to be told of the results.

The American Academy of Pediatrics supports confidential teen screening, she said.

Saturday, March 15, 2008

James and Stinky Cheese



“I brought us some dinner,” my husband smiled as he dragged an overstuffed canvas bag of groceries into the house.

I looked up from the computer, where I was diligently finishing an editing job, long enough to tell him I was starving. He went into the kitchen to put away the food and came back a few minutes later.

“Do you think this is okay?” James shoved a hunk of Morbier under my nose. I sniffed. It smelled strongly of ammonia and something else—a little like the close creamy air in the dairy room of the small farm where we used to buy fresh milk in Massachusetts.

“It’s fine.”

“You sure?” He held the stinky cheese so close to me that it touched my nostrils. From that vantage point the smell was a lot more unpleasant. More like the cow’s stall than the milk room, suspiciously flatulent.

“I could smell it before,” I protested, my nostrils recoiling. “It’s fine. I think.”

So James put on some Coltrane, poured two glasses of Shiraz, and brought back a plate of salami, cheese, olives, bread, and oranges into the living room. We drank our wine and managed to forget, for a moment, that we have three small children whose whining today would have brought Mother Teresa to her knees.

James spread some Morbier on a piece of fougasse and took a brave bite.

“It’s good?” he said, like he was trying to convince himself.

I tried some too.

Although the cheese tasted like straw mixed with cow dung to me, I didn’t want to ruin the moment by saying so. Not that James would have taken it badly. He prides himself on having an adventuresome palate and insists he’ll try anything once but he doesn’t expect everyone in the family to share his culinary open mind.

Besides, when I lived in Niger, West Africa and a steaming bowl of fried locusts was set in front of me by one of the chief’s wives in Deytegui-Beri, I followed her lead and snapped off my delicacy’s head, discarded the black brains, and crunched the erstwhile insect between my teeth, trying hard not to gag. James has never been able to top that.

But stinky cheese is closer to his heart than the seviche and the saddle of rabbit he had at the Peerless when my father-in-law came to visit. My mother-in-law has a vivid recollection of how her mom and dad, whose families were both from Italy, would prepare platters of Limberger—a gooey German cheese—raw onions, and dark rye bread and carry them into the basement and away from the children. The smell was so strong that they wouldn’t eat the Limberger in the kitchen because it would stink up the house.

“Stinky cheese! Stinky cheese!” my 5-year-old chants in the grocery store. Is there a gene for it? Maybe it’s an Italian thing.

We finish our dinner and James clears the dishes, poking his head back in to tell me that the guys at the co-op almost didn’t sell him the cheese because it was puffy and bubbling under the wrapper. Coltrane’s saxophone screeches to a stop.

“Now the cheese is away and I can still smell it,” James exclaims. “Whew, that is some serious cheese.”

The crickets tasted like shrimp. In spite of myself I rather liked them.

Thursday, March 13, 2008

Conference on Today's Families in Chicago

On April 25th and April 26th the Council on Contemporary Families is holding a conference called "Family Issues in Contention."

Here's some information from the press release:

PROGRAM HIGHLIGHTS

Teen sexuality and "hooking up": Should we be worried?

We've all heard the stories: teenage girls performing oral sex on boys they just met at a party; college students avoiding lasting relationships by "hooking up" on weekends. What is a hook-up? Who does it? What are its effects on women? On men? And does it endanger commitment and marriage as life goals? Hear the differing perspectives of Stanford sociologist Paula England—who has interviewed students around the country on this topic; Laura Sessions Stepp, reporter for the Washington Post and author of Unhooked; and psychologist Deborah Tolman, research associate and former director of San Francisco State University's Center for Research on Gender and Sexuality.

Cohabitation: Is cohabitation is "good" for love or for marriage?

"The conventional wisdom is that living together before marriage is associated with a higher chance of divorce," explains Pamela Smock, a University of Michigan demographer who will present her research at the CCF conference. Updated research evidence, Smock argues, throw these conclusions into doubt. But marriage researcher Scott Stanley (University of Denver) warns that when cohabitors "drift" into marriage, they face heightened risks. Other panelists include psychologist Jaslean LaTalliade (University of Maryland), and sociologist Catherine Kenney (Bowling Green State University).

Divorce: Should they stay or should they go?

What are the latest thoughts on divorce versus sticking it out? Relationship expert Pepper Schwartz (University of Washington) explains that this panel will examine several key questions about marital stability. "First, what is the latest research on whose marriages are lasting or dissolving? Second, what is the debate among clinical professionals over the counselor's role in advising couples to stay or go? Third, what is the role of sex in maintaining a stable relationship and what role should sex play in deciding to end one?" Along with Schwartz, speakers include law professor Nancy Polikoff (American University, author of Beyond (Straight and Gay) Marriage: Valuing All Families Under the Law) and psychologist Linda Young (Seattle University). In addition, sociologist Alan Jui-Chung Li (Rand Corporation) will present a new study that challenges conventional research methods for assessing the impact of divorce on children. (His sure-to-be controversial findings will be released for advance perusal by the press in early April.)

Adoption -- Is Transracial and Transnational Adoption the Right Policy for Parents? Children? Society?

Consider this: Roughly 80-100 million Americans have adoption in their families. We don't talk about it much, but adoption touches nearly all our lives.

"The world of adoption is changing rapidly and radically. The issues adoption raises affect a huge cross-section of Americans. And the issues couldn't be more touching, personal, or controversial," explains Adam Pertman, Executive Director of the Evan B. Donaldson Adoption Institute and author of Adoption Nation. This panel will examine topics ranging from Caucasians adopting African Americans, to gays and lesbians becoming parents through adoption, to whether Americans should be adopting from abroad when so many children in this country need homes.

Along with Pertman, other presenters include University of Texas-Austin professor of social work Ruth McRoy; Illinois State University professor and foster care expert Jeanne Howard; and University of Illinois-Chicago professor of education and author of Adoption in a Color Blind Society Pamela Quiroz.

FINDING CONSENSUS
Finding consensus on these topics is difficult, partly because they are surrounded by myths and misinformation, and partly because new research comes in every day, sometimes with contradictory findings. Our speakers aren't here to have a polarized debate, but they won't shy away from differing interpretations. The panels are designed to represent different bodies of research and clinical work -- sociological, economic, psychological, public policy—that can help us get the story right when it comes to understanding these controversial topics that affect families everywhere.

NO BORING PAPER READING HERE
Each year, the CCF conference successfully creates an environment of dialogue and participation. Presenters limit their prepared remarks to 10 minutes; this means that presenters and conference participants convene for focused, lively deliberation on provocative questions. The conference is geared towards addressing key policy and public issues of the moment, moving beyond simple party-line solutions. Informal meeting times extend the discussion and give reporters ample opportunity to find new contacts and new stories to enhance another year of stories.

Wednesday, March 12, 2008

Fatherhood in Niger


On African Fathers and an American Dad
By Jennifer Margulis


(A version of this column was originally published last year on Literary Mama)

Soumana, a work colleague, called me to cancel.

He and his family couldn't come to lunch at our house, he explained, because his daughter was too sick. She had better days and bad days and this day was a bad day.

Last year she contracted cerebral malaria. Once a social, inquisitive, energetic little girl, now she can barely talk and walks with difficulty. The illness that got into her brain mangled her body and damaged her mind.

Soumana looks broken when he talks about it. His hair has more gray in it than when we first came to Niger eight months ago. He rarely smiles.

"I'm really attached to her," he explained quietly. "Well, the truth is I'm very attached to all of my children. But she's always been special."

A few months later Soumana invited us to his house. "I want you to meet my family," he said. "And this way you can see my daughter for yourself."

"I'm not sure I want to go," my husband said that Sunday. "I'm afraid it will make me too upset." James frowned his little boy frown, his brow a mat of worry lines.

"But just because you don't see it doesn't mean it isn't there," I said. "Even if we never meet Soumana's daughter, it doesn't mean she isn't suffering."

"That's true," James said quietly.

One of James's biggest fears is that something like cerebral malaria will happen to one of our children. Another is that he won't live long enough to watch his children grow up. He thinks about dying a lot. He imagines a pain in his stomach is the bleeding ulcer that killed his grandfather, the wart on his foot a fast-growing cancer.

James's grandmother died when his mom was only nine. His aunt, his mom's oldest sister, choked on a piece of tenderloin while on a date with her husband. He had left the table to call the babysitter, to check on their five children and when he returned, his wife was already dead. She was only 33. So to James, when he was little every goodbye was forever. His mom often acted like she would never see him again and made a point of giving a long hug and lots of kisses, of saying goodbye with a lot of love.

Soumana picks us up in his jalopy and we bump our way over the sandy streets. The car rumbles so loudly we have to shout over what Soumana jokingly calls its "music."

Although city life is a little less restrictive, in Niger men and women pray separately, eat separately, and play very different and sharply defined roles in the life of the family. It's unheard of to have a joint bank account. (Why share your money with your husband when he could use it to pay for a second wife?) A man is expected to provide. A woman takes care of the children.

You seldom see a man carrying a baby in public. Fathers don't change diapers. They don't prepare food for their children. They don't take them to the park, or shopping.

My husband wasn't sure he wanted to do any of that either when we first met. He thought he would have "maybe one" child. He had never seen, let alone held, a newborn until our daughter was born. During our courtship I suggested he stay home with our future children while I work. He found the idea surprising but began to consider it.

When our first child was born we both fell in love. Before she was old enough to do anything but drool, my husband would hold her in his arms and sing to her, talk to her, and tell her elaborate stories about walking on a cobblestone road to Sleepy Castle. At first I worked and he stayed home, then after the birth of our second child he worked and I stayed home. He hated being away long hours as much as I did. It took a long time to get it right -- and our arrangement is far from perfect -- but we finally devised a schedule that allowed us both to work part time and be home.

At his compound Soumana is solicitous and hospitable. He introduces us to his three daughters, two nieces, nephew, wife, and housekeeper with obvious pride. The youngest climbs onto his lap and he absent-mindedly strokes her hair. His wife brings a big plate of chicken. She uses a fan to shoo the flies from the food. His oldest daughter, Chamsiya, is beautiful, with intelligent eyes and a bright smile. Grains of rice hang from her lower lip. The malaria has mangled her limbs and she can do little for herself. Soumana lifts a cup of water to her lips. Chamsiya grunts monosyllables -- she needs to go to the bathroom. He takes her by the hand, she shuffles one foot in front of the other, gripping her father tightly as he leads her to the outhouse.

Ask any Nigerien and he'll tell you that raising children is the responsibility of women. But in private, like at Soumana's house that Sunday, men are sometimes deeply engaged with their children. Ask James what accomplishment he's most proud of now and he'll point to our 7-year-old who has his chocolate brown eyes and keen sense of pride, our 6-year-old who inherited his broad brow and incredible talent for art, and our mischievous 3-year-old who makes trouble from daybreak to sunset.

Becoming a father means investing so much in a completely unknown world. Parenting is terrifying. It's also the most gratifying thing James and I have ever done.

Tuesday, March 11, 2008

Fatherhood in 2008


Research by two professors suggests that dads are contributing more around the house and with childcare than ever before. In a paper prepared for the upcoming conference of the Council on Contemporary Families, Oriel Sullivan and Scott Coltrane insist that instead of a "stalled revolution" in America, men are pulling their weight at home more than ever before.

Here's an excerpt from the section of their paper entitled Key Evidence of Convergence in the Work-Family Balancing that Men and Women Do: (Don't you just love academese?)

* In the USA, men's absolute and proportionate contributions to household tasks increased substantially over the past three decades, substantially lessening the burden on women. National cross-time series of time-use diary studies show that from the 1960s to the 21st century, men's contribution to housework doubled, increasing from about 15 to over 30 percent of the total (Robinson & Godbey 1999; Fisher et al 2006). By the early 21st century, the average full- or part-time employed US married woman with children was doing two hours less housework than in 1965.

* The most dramatic increase in men's contributions has been to child care. Between 1965 and 2003, men tripled the amount of time they spent in child care (Bianchi, Robinson and Milkie 2005; Fisher et al 2006). Fathers in two-parent households now spend more time with co-resident children than at any time since large-scale longitudinally comparable data were collected (Coltrane 2004; Pleck and Masciadrelli 2003). In this period, women also increased their time spent in childcare and interaction with children, doubling it over the period from 1965 to 2003. This mutual increase in child care appears to be related to higher standards for both mothers and fathers about spending time with children.

* These trends are occurring in much of the Western industrial world, suggesting a worldwide movement toward men and women sharing the responsibilities of both work-life and family life. Data from 20 industrialized countries over the period 1965-2003 reveal an overall cross-country increase in men's proportional contribution to family work (including housework, child care and shopping), from less than one-fifth in 1965 to more than a third by 2003 (Hook 2006).

* Furthermore, an analysis of couple's relative contribution to housework in Britain found a steady growth from the 1960s to the 1990s in the percentage of families where the man contributed MORE time to family work (including housework, shopping and child care) than the woman. This trend was particularly marked among full-time employed couples (Sullivan 2006).

* There is, overall, a striking convergence of work-family patterns for US men and women. While the total hours of work (including both paid and family work) done by men and women have remained roughly equal since the 1960s (Fisher et al 2006) - in particular for parents (Bianchi et al 2006) - there has been a growing convergence in the hours that both women and men spend in the broad categories of paid work, family work and leisure (Fisher et al 2006). Women's paid work time has significantly increased, while that of men has decreased. Correspondingly, women's time devoted to housework has decreased, while the time men spend in family work of all kinds has increased.

Monday, March 10, 2008

Boys and Guns

Jennifer's latest column at the Ashland Daily Tidings is about the fascination many boys have with guns. You can read it here: "I'm Shooting You"

Thursday, March 6, 2008

Autism and Vaccines

Today's Atlanta Journal Constitution has an excellent article about an Athens, Georgia family that will receive compensation from the federal government for their 9-year-old daughter's autism.

Here are the first few graphs of the article, written by Alison Young:

Ga. girl helps link autism to childhood vaccines

By ALISON YOUNG
The Atlanta Journal-Constitution
Published on: 03/06/08

In a move autism family advocates call unprecedented, federal health officials have concluded that childhood vaccines contributed to symptoms of the disorder in a 9-year-old Georgia girl.

The U.S. Department of Health and Human Services has concluded the family of Hannah Poling of Athens is entitled to compensation from a federal vaccine injury fund, according to the text of a court document in the case. The amount of the family's award is still being determined.

The language in the document does not establish a clear-cut vaccine-autism link. But it does say the government concluded that vaccines aggravated a rare underlying metabolic condition that resulted in a brain disorder "with features of autism spectrum disorder."

Here are our observations:

1) Why has the federal government sealed the files in the case? What do they have to hide that is making them so secretive?

2) Hannah's mother is a nurse and a lawyer, her father is a neurologist M.D./Ph.D. with an impressive research and publication record. They are mainstream intelligent people who live in the south and who have been trained in American medicine and are a product of the American medical system. They believe there is a connection between their daughter's condition and the vaccines she was given at 18 months. Being catapulted into the limelight like this cannot be easy for them and they could not be making these allegations lightly.

3) The fact that a federal agency to compensate people who have been harmed by vaccines exists is proof enough, to us, that vaccines harm people. If vaccines were perfectly safe, tax dollars would not be spent to compensate people for vaccine-related injuries.

4) Although many mainstream conventional doctors are liable to look askance or even dismiss you from their practice, it is extremely important to make your own decisions about how and when to vaccinate your babies. We have all been trained to respect medical doctors and it is not an easy thing to oppose your doctor's recommendations and choose your own path for your child's health. Dads need to be supportive and vocal advocates for their babies.

5) If you choose to have your baby go to Well Baby visits (this is optional though your doctor will never tell you that!), you need to talk to your partner about vaccines beforehand, bring a list of questions to your health provider, and know that you have the right to delay vaccinating your baby, to do one vaccine at a time, or to decide to not do any vaccines.

BBBD blog tour official announcement

It's official. We're going on tour. We get to travel around the country and around the world. Well, in cyberspace anyway.

April 25th to May 25th.

We have 30 amazing bloggers signed up -- from dad blogs to photography blogs (thanks Sean Bagshaw) to, yep, the Joy of Sox in Canada.

What do the Red Sox have to do with dads and babies and bonding and our book?

Stay tuned to find out! (Or buy a copy of the book which is available on Amazon though the official pub date isn't until March 28th).

Sunday, March 2, 2008

Premature Birth


A version of this article originally appeared in Pregnancy Magazine

Born Too Soon
By Jennifer Margulis

When Devon Allen’s son, Owen, was eight weeks old he was disconnected from life support machines for the first time. The Allens dressed their tiny baby in green knit pants and a sweater with red cuffs and a white snowman on it. Too small for baby clothes, Owen wore an outfit that came from a doll. “My mom cut the back of the sweater and put on Velcro so he could wear it,” recalls Allen.

It was a difficult Christmas. Four weeks earlier, Owen’s twin brother, Dermot, died. Although the doctors mentioned to Allen, 28 years old at the time, that she was at a higher risk of preterm labor because she was carrying twins, no one expected the babies so soon. “The doctors kept saying, ‘oh you’re at higher risk,’ but in the same breath they’d say, ‘maybe you’ll have Christmas babies,’” Allen remembers. Instead, Allen found herself in the hospital in full-blown labor, dilated to six centimeters, in October. She was only 25 weeks pregnant. The twins were born well before Halloween, Owen weighing in at one pound 10 ounces, Dermot at two pounds two ounces.

Allen, a Kindergarten teacher in Chicago, blamed herself. “When something like this happens to you, the mom typically looks back and says, ‘what did I do wrong?’” Allen says. “It’s so clich├ęd to say not to blame yourself but there’s no way you don’t. I knew deep down it wasn’t my fault, but you just question yourself.”

According to the March of Dimes, every day approximately 1,300 babies in America are born prematurely, or one out of every eight children, totaling almost 500,000 babies a year. “It’s the largest preventable cause of neonatal death,” says Dr. Durlin Hickok, M.D., Medical Director for Adeza Biomedical—a company based in Sunnyvale, CA, that has developed a test to identify women at risk for preterm labor, “the only other category is birth defects.” Disturbingly, the number of babies born prematurely is going up in the United States. “The incident of preterm birth was 12.1% in 2002, which is up 27% from 1982,” says Dr. Siobhan Dolan, MD, the Associate Medical Director at the March of Dimes and an Assistant Professor of Obstetrics and Gynecology and Women’s Health at the Albert Einstein College of Medicine in New York. “The rate is high and it’s rising. It’s going in the wrong direction.”

Diagnosed with an incompetent cervix, Allen was given a cerclage—a stitch that holds the cervix closed—when she was 14 weeks pregnant with her second son. Despite this precaution, Zachary was also born prematurely, at 33 weeks. Allen spent two and half weeks in the hospital and a month on bed rest. Still, at 30 weeks to the day her water broke. “I was having bleeding on and off and they weren’t really sure why,” she says. One of the hardest things for the Allens was how little the doctors could tell them about what was happening with her body and the baby. “The doctors know so little about it,” she says.

Despite advances in postnatal medical care, the problem of premature birth is nothing short of a national crisis. People aren’t aware that premature birth—which is defined as any baby born before 37 weeks gestation—is such a serious problem, says Dolan. “They think it’s all okay, that everything will be taken care of in the NICU.” Yet although there is much more sophisticated technology to keep preemies alive, a baby born at 25 weeks gestation only has a forty percent chance to live. And premature babies that do survive often face a host of health complications—problems that can last into their adult lives.

“The vast majority of babies are completely normal when they are tested,” says Hickok, “but there are a lot of babies that suffer big consequences, and a lot more that suffer mild consequences. For a lot of these babies, there may be lifelong detriments to their health and well being…that may not be apparent until later on in life.” Dolan agrees, “Which specific children will have which outcomes is not well known at all,” she says. “You just don’t know. Kids do differently and kids heal differently. We still need a lot of research on prematurity.”

According to Dolan, the most common problem in babies who are born early is lung development, and many suffer from “Respiratory Distress Syndrome” (RDS), which can range from a little trouble breathing to the need to be on a ventilator. These babies are usually given surfactant, a foamy substance that lines the inside of the lungs and keeps them from collapsing when the baby exhales. Usually babies born at 35 or 36 weeks do well, says Dolan, “but they may spend some time in the ICU, which can be very hard on families that want that time to bond.” Since preterm birth interrupts normal lung development, preemies are also at higher risk for contracting Respiratory Syncytial Virus (RSV), a common childhood illness that causes infection in the lower respiratory tract and can be fatal for children under one.

The most serious problems occur in babies, like Owen and Dermot, who are born before 28 weeks gestation. In addition to lung problems, these tiny newborns are at risk for a condition called necrotizing enterocolitis (NEC). “That’s when a portion of the bowel dies and needs to be removed,” explains Dolan. They can also suffer from interventricular hemorrhage (IVH), which is bleeding in the brain. In addition to these very serious conditions, micropreemies are also at higher risk for cerebral palsy, mental retardation, and long-term vision and hearing problems.

Who’s at risk?
Although many risk factors have been identified, almost fifty percent of premature labor had no known cause. Women who have had a previous premature delivery, who have cervical or uterine abnormalities, who have been exposed to the drug diethylstilbestrol (DES), and who are carrying multiples (twins, triplets, or more) are all at higher risk for preterm birth. According to Hickok, “Fifty percent of mothers who have a twin gestation have babies who are born prematurely.” African American women are also twice as likely to give birth prematurely than white women. In addition, women who smoke, women who are either grossly overweight or underweight, and women who live in poverty and/or suffer from poor nutrition are also at higher risk. Scientists also believe that pregnant women who work long hours standing up, women younger than 17 and older than 35, and women who do not receive good prenatal care are at higher risk. “Poverty, poor access to prenatal care, lack of health insurance, low pre-pregnancy weight, and poor lifestyle habits—drinking, smoking, drug use—can all contribute to preterm birth,” says Hickok.

Optimizing Chances for a Healthy Labor and Delivery
While more research is needed into what causes premature birth, experts agree that there are several things pregnant women can do to optimize their chances for a healthy labor and delivery. One recent study showed that sheep who were fed a low-calorie diet right before becoming pregnant and during the first part of pregnancy delivered their lambs up to seven days sooner than sheep whose food intake was not restricted. It’s important for women not to get caught up “in recent fads to feel like they’re attractive if they look like skin and bones,” says Hickok, who adds that good nutrition even before getting pregnant, proper exercise, and a healthy body weight are really important factors that contribute to a healthy pregnancy. If you are planning to get pregnant, taking a prenatal vitamin supplement high in folic acid is also important, according to Hickok.

Dolan also recommends that women see their health care provider before they become pregnant to review their overall health, discuss any possible risk factors, and get a pap smear. “Make sure you don’t have any infections,” she says. “Sexually transmitted diseases and urinary tract infections can cause increased risk.” In addition, it is important not to drink or smoke during pregnancy. “Stopping smoking, stopping drinking, and making sure you are the right weight” are imperatives to a healthy pregnancy, says Dolan.

For women who have been identified to be at a higher risk for preterm labor, there is a new test available, called the fetal fibronectin test. The test itself is simple—it involves a speculum exam (like having a pap smear) and is done in a doctor’s office in a matter of minutes. The test measures the presence of fetal fibronectin, a protein that is produced by the fetal membranes and is responsible for keeping the membranes firmly attached to the uterus. At the end of a normal pregnancy the fetal fibronectin breaks down, a signal that the fetus is becoming detached from the mother and is ready to be born. According to Hickok, if fetal fibronectin is present in the cervix or vagina between 22 to 35 weeks gestation (when it should be virtually undetectable), it is a sign that the mother is at high risk for premature labor.

As importantly, says Hickok, “The test has a 99.5% negative predictive value … If it’s negative, the risk of delivery within the next two weeks is 0.5%.” For women at risk, the fetal fibronectin test can rule-out preterm labor and be reassuring psychologically. It also helps doctors make responsible decisions about whether hospitalization, bed rest, and even drugs to stop labor, and other interventions are necessary. “Less than half of all women hospitalized deliver prematurely,” says Hickok, who calls unnecessary hospitalization “one of the biggest overlooked problems in obstetrics today,” arguing that it can create health problems (including blood clots and loss of muscle mass from restricted movement), financial strain, and emotional distress for pregnant women.

If you do have a premature baby, there are dozens of state-run programs and nonprofit organizations that can help. “Once you have your preemie out of the hospital don’t deny that he or she may have ‘special needs,’” advises Allen. “I think the term alone scares and isolates parents. But getting early intervention is so key to the baby’s development, both physically and neurologically.” Allen urges parents of premature babies to be proactive about their health care, and to educate themselves about services available to them. “There is so much help out there for low birthrate babies,” says Allen. “Parents have got to find out what help their baby qualifies for. Although Owen didn’t necessarily show a ‘need’ for many therapies he received, my thought was that any help will only aid in his development.” She advises parents of preemies to communicate as much as possible with their doctors and the health care team responsible for their children and, especially, to join support groups and meet other parents who are going through the same ordeal. “My husband and I realized that we were our boys’ voices,” she says. “We didn’t allow ourselves to get sucked into feeling sorry for ourselves and the devastating position we found ourselves in.”

Owen, who just celebrated his fifth birthday, has a mass of curly blond hair, bright hazel eyes, and a devilish smile. His four-year-old brother Zachary has stock straight brown hair and brown eyes. Both boys are thriving. And their little sister Lucy, 16 months old, was a hefty nine pound two ounce baby delivered by C-section at 39 weeks. The doctors don’t know what was different about Lucy’s gestation but Allen doesn’t care. “I took the baby home the regular way,” she says, remembering being wheeled out of the hospital clutching her healthy newborn to her chest, “which is what I was dying to do.”


For More Information:
www.marchofdimes.com -- The resource for all things preemie on the Web, The March of Dimes explains that their mission is “to improve the health of babies by preventing birth defects and infant mortality.” Their Web site has a wealth of information about premature birth, fact sheets, and real-life stories about premature birth. The site has a new section called “Share Your Story” where parents of preemies can write about their own personal experiences and read about the experiences of others.

www.preemie-l.org -- This is a nonprofit organization dedicated to helping parents of premature babies. The Web site includes a recommended reading list, an on-line discussion group, and essays and advice sheets for parents and caregivers of premature babies.

www.compassionatefriends.org -- The Compassionate Friends, Inc. is an organization that offers grief support to parents, grandparents, and siblings after the death of a child. The Web site includes essays from their magazine, “We Need Not Walk Alone,” as well as information about locating a local chapter and how to grieve the loss of a child.

www.acog.com -- The American College of Obstetricians and Gynecologists (ACOG) is a group of professionals providing health care for women. While much of the information is technical and slated for health care professionals, the site includes many pamphlet sheets for patients, a physician locator guide, and a lot of useful information.