For Dad: A guide on strokes, including a glossary of terms

A scanning electron micrograph of a blood clot.  Image credit: Steve Gschmeissner/Science Photo Library ( 

On Monday January 1st, I overheard my dad telling my mom how his left arm was numb and that he had no strength in his left hand.  I immediately ran into the medicine cabinet, grabbed two aspirin, practically shoved them down my dad’s throat, and told him to get his coat.  He was going to the ER. 

As it turns out, my dad was having a stroke, which is basically the cessation of blood flow to an area in the brain.  Luckily, my dad only suffered a very mild stroke, and after several days of monitoring and a battery of tests, he was released from the hospital. 

While we are all relieved that he dodged what could have been a fatal bullet, I came to realize that there was only a superficial understanding of what was actually happening.  So, to help demystify the process for my dad (and anyone else in this situation), I’ve decided to write a mini-guide on strokes.  Below you will find some handy information about strokes, including what they are, as well as a glossary of relevant terms.   

Why we need blood flow in the brain

Before I get into what happens to the brain when a stroke occurs, it is important to first understand why unrestricted blood flow in blood vessels in the brain is important.  The brain is a type of tissue, and like all tissues in our body, it needs a constant access to nutrients and oxygen.  Furthermore, tissues produce waste, and this waste needs to be removed.

The human cardiovascular system. Image Credit: Wikipedia.
Evolution’s solution to this problem is the development of a vast network of blood vessels existing within our tissues.  For instance, take a good look at your very own eyeballs.  Especially when we are tired, we can see tiny blood vessels called capillaries, which help to deliver key nutrients and oxygen, keeping our organs of sight healthy and happy.  Now consider that this type of blood vessel network exists in all tissues in our bodies (because it does).  Depending on the needs of the tissue, these vessels vary in size and number.  Sometimes the blood vessels are large, like the aorta, and sometimes they are super tiny, like the capillaries in our eyes.  However, all serve the same function: to make sure that cells can breath, eat, and get rid of waste.

When blood is prevented from traveling to a specific area within a tissue, the cells in that area will not get enough fuel and oxygen and will begin to die.  For instance, the restriction of blood flow to the heart leads to the death of heart tissue, causing a heart attack.  Similarly, the interruption of normal blood flow within the brain causes the affected cells in the brain to essentially starve, suffocate, and die, resulting in a stroke.  The medical term for a lack of oxygen delivery to tissues due to a restriction in blood flow is ischemia.  In general, the heart, brain, and the kidneys are the most sensitive to ischemic events, which, when occurring in these organs, can be fatal.      

So, what exactly is a stroke?

Some strokes can be categorized as being ischemic.  As mentioned above, an ischemic stroke occurs when blood flow (and the associated oxygen supply) is restricted in an area within the brain, leading to tissue death.  A major cause of ischemic strokes is a progressive disease called atherosclerosis, which can be translated to mean “the hardening of the arteries.” 

Severe atherosclerosis of the aorta.
Image Credit: Wikipedia.
Affecting the entire cardiovascular system, atherosclerosis is the result of cholesterol build-up inside of our blood vessels, causing their openings to become narrower.  These cholesterol plaques can eventually burst, leading to the formation of a blood clot.  Ischemic strokes occur as a result of a blood clot, medically known as a thrombus, that blocks the flow of blood to the brain, a phenomenon often related to complications from atherosclerosis.  A ruptured cholesterol plaque and resulting blood clot can occur in the brain, or it can occur elsewhere in the body, such as in the carotid arteries, and then travel to the brain.  Either way, the blood clot will block blood flow and oxygen delivery to sensitive brain tissue and cause a stroke.           

Strokes that result from the bursting of a blood vessel in the brain can be categorized as being hemorrhagic.  In this situation, there may be a pre-existing condition rendering the blood vessels in the brain defective, causing them to become weak and more susceptible to bursting.  More often than not, a hemorrhagic stroke is the result of high blood pressure, which puts an awful lot of stress on the blood vessels.  Hemorrhagic strokes are less common than ischemic strokes, but still just as serious. 

How do you know if you’ve had a stroke?

The symptoms of a stroke can vary depending on which part of the brain is affected and can develop quite suddenly.  It is common to experience a moderate to severe headache, especially if you are hemorrhaging (bleeding) in the brain.  Other symptoms can include dizziness, a change in senses (hearing, seeing, tasting), muscle tingling and/or weakness, trouble communicating, and/or memory loss.  If you are experiencing any of these warning signs, it is important to get to the hospital right away.  This is especially important if the stroke is being caused by a blood clot since clot-busting medicationsare only effective within the first few hours hours of clot formation. 

Once in the hospital, the caregiver will likely give anyone suspected of having a stroke a CT scan.  From this test, doctors will be able to determine if you had a stroke, what type of stroke you had (ischemic versus hemorrhagic), or if there is some other issue.  However, as was the case with my dad, a CT scan may not show evidence for a stroke.  This issue can arise as a result of timing (test performed before brain injury set in) or size of affected area (too small to see).  When not in an emergency situation, doctors may also or instead choose to prescribe an MRItest to look for evidence of a stroke.    

If a stroke has been confirmed, the next steps will be to try and figure out the underlying cause.  For ischemic strokes, it is important to find out if there is a blood clot and where it originated.  Because my dad had an ischemic stroke, he had to undergo a series of tests that searched for a blood clot in his carotid arteries though ultrasound, as well as in the heart, using both an electrocardiogram(EKG) and an echocardiogram(ultrasound of the heart).  The patient might also be asked to wear a Holter Monitor, which is a device worn for at least 24 hours and can detect potential heart abnormalities that may not be obvious from short-term observations, like those obtained via an EKG.  If a stroke is due to a hemorrhagic event, an angiogramwould be performed to try an pinpoint the compromised blood vessel.  

A stroke you did have.  Now what?

Once a stroke has been confirmed and categorized, the patient will most likely be transferred to the stroke unit of the hospital for both treatment and further observation.  If a clot has been detected, a patient will receive clot-busting medications (assuming this detection occurs within several hours of clot formation).  Alternatively, a clot can be mechanically removed with surgery (animation of clot removal, also known as a thrombectomy).  Patients might also be given blood-thinning medications to either ensure that clots do not increase in size or to prevent new clots from forming.   As for secondary prevention, meaning preventing another stroke from happening, patients might be given blood pressure and cholesterol lowering medications. 

If a disability arises due to stroke, a patient might need to undergo rehabilitation.  The type and duration of stroke rehabilitation is dependent on the area of brain that was affected, as well as the severity of the injury.  

Major risk factors and predictors of stroke

There are many situations that could predispose one to having a stroke, and many of these conditions are treatable.  The absolute greatest predictor of a stroke is blood pressure.  High blood pressure, also known as hypertension, will significantly raise your risk of having a stroke.   Other modifiable stroke risk factors include blood cholesterol levels, smoking, type 2 diabetes, diet, alcohol/drug use, and a sedentary life style.  However, there are also risk factors that you cannot change including family history of stroke, age, race, and gender.  But that shouldn’t stop one from practicing a healthy lifestyle!

In conclusion, strokes are no joke.  I am glad that my dad is still here (yes, dad, if you are reading this, we are in fact friends) and that he escaped with relatively no real consequences.  Let’s just not do this again, ok?  

Stroke Glossary

Anti-coagulants:These are medications that help to reduce the incidence of blood clotting.  The repertoire includes aspirin, Plavix, Warfarin, and Coumadin.  Also called blood thinners.
Atherosclerosis:Literally translated as “hardening of the arteries,” this condition is hallmarked by the build-up of cholesterol inside of blood vessels.  Atherosclerosis can lead to many complications including heart disease and stroke.

Atherosclerotic Plaque: The build of fatty materials, cholesterol, various cell types, and calcium.

Cardiovascular System: The network of blood vessels and heart that works to distribute blood throughout the body. 

Carotid Arteries: Arteries that carry blood away from the heart toward the head, neck, and brain.

CT Scan: Cross sectional pictures of the brain using X-rays.

Echocardiogram:An ultrasound of the heart.  In stroke vicitms, electrocardiography is used to detect the presence of a blood clot in the heart.

Electrocardiogram (EKG or ECG): The measurement of the electrical activity of the heart.  It is performed by attaching electrodes to a patient at numerous locations on the body, which function to measure electrical output of the heart.

Embolic Stroke: A type of ischemic stroke, an embolic stroke occurs when a blood clot forms (usually in the heart) and then travels to the brain, blocking blood flow and oxygen delivery to brain tissue.

Hemorrhagic Stroke: A type of stroke that results form the bursting of a blood vessel in the brain.

Hypertension: High blood pressure, defined as having 140/90 mmHg or above.

Ischemic Stroke: The restriction of blood flow to an area within the brain.

Magnetic Resonance Imaging (MRI): An imaging technique employing a magnetic field that can contrast different soft tissues in the body.

Thrombolytic Medications: Medications that are approved to dissolve blood clots.  Also called “clot-busting” medications.

Thrombus:Blood clot.

XX Tech Report: Rapid detection and treatment for deadly blood infections

Methicillin-resistant Staphylococcus aureus (green), a frequent agent
in blood infections, under attack from a white blood cell.
Photo: Wikimedia Commons, public domain.

By Jeffrey Perkel, Ph.D., DXS technology editor

[Ed. note: Introducing our new technology editor, Jeffrey Perkel

Jeffrey, a recovering scientist, has always had a passion for the technology and the gadgetry of science. He has been a scientific writer and editor since 2000, when he left academia to join the staff of The Scientist magazine as a Senior Editor for Technology. Before that, he studied transcription factor biology at the University of Pennsylvania and Harvard Medical School — training that, surprisingly, has little application in the real world. In 2006, he and his family headed west to Pocatello, Idaho, and has been a freelance writer ever since. You can see why Double X Science is thrilled to have him on the team! You can find Jeffrey at his Website or on Twitter at @j_perkel. Welcome, Jeff!]

A story published earlier this week on both alarmed me and piqued my interest.

It alarmed me because, well, I don’t like microbes much (despite, or perhaps because of my background in microbiology), and this article is about people getting very, very sick from sepsis (aka septicemia or bacteremia, an infection of the blood), which presents itself as a whole-body inflammatory response and a significantly increased risk of organ failure. It is an important area of microbiology because sepsis results from a bacterial infection, and the article says that 20% to 50% of infected patients die from sepsis.

My interest was piqued, however, because the piece goes on to talk about how a new genetic testing device that the US Food and Drug Administration approved in June could possibly help rein in the disease. That’s because it can reduce the time for diagnosing sepsis from days to hours. And when it comes to sepsis, time is critical.

Sepsis is confirmed by testing for the presence of specific types of bacteria in blood samples from patients and identifying what bacteria, if any, are in the circulation. If they are present, the researchers need to find out if the bugs are resistant to any antibiotic. Unfortunately, all that takes time – time the patient often doesn’t have. As the news story notes,

A 2010 study in the journal Critical Care Medicine found that for every hour of delay in administering antibiotics, mortality rose by 7.6 percent.

The new testing system is called the Verigene Gram-positive Blood Culture Test, marketed by Nanosphere Inc., a nanotechnology company in Northbrook, Ill. describes the system:

About the size of a small microwave oven, the Verigene Gram-positive Blood Culture Nucleic Acid Test is the first system approved by the FDA to identify quickly certain bacteria responsible for bloodstream infections — and whether some are resistant to the top drugs used against them.


Instead of the three days required for a traditional blood culture panel, results from the Verigene test come back within three hours, identifying up to a dozen specific bacteria known to cause sepsis, including strains of Staphylococcus, Streptococcus, Enterococcus and Listeria.

Of particular importance, the system can catch some particularly nasty bugs, methicillin-resistant Staphylococcus aureus (MRSA; see Maryn McKenna’s excellent Superbug if you really want to terrify yourself on this subject) and vancomycin-resistant Enterococci.

In its press release announcing the Verigene test’s approval, the FDA said that, compared to standard microbiology methods, the Verigene test results “were consistent with traditional blood culture methods in 93 percent to 100 percent of the comparisons.”

The test is remarkably simple, and even automated, requiring a dedicated sample processing instrument and a reader from Nanosphere.

The patient sample is added to a glass slide covered with capture signals that recognize DNA from sepsis-causing bacteria. The capture signals are placed on the glass slide in a defined order, each programmed to recognize only one strain of bacteria. This uniform order helps scientists identify which strain of bacteria, if any, is responsible for the infection. If the patient blood sample contains bacteria, the signals on the glass slide will capture its DNA, and the special scanner and software can detect this capture.   

What sets the Verigene test apart from the previously available tests for sepsis is precisely how they do the detecting. The test adds sub-microscopic gold balls, called gold nanoparticles, to the glass slide. These gold nanoparticles are studded with more capture signals. When bacteria match up with the same specific capture signals, the nanoparticles will attach to that area. This ball gives scientists the ability to more rapidly detect which type of bacteria, if any, is present, and thus select the right course of antibiotic treatment.

The reaction is developed by coating the gold nanoparticles with silver, a process called signal amplification, which increases sensitivity up to 100,000 times, and then hitting it with light. Those spots containing the nanoparticles scatter light; those without it, do not. The effect is so strong, the original paper detected it using a “conventional flatbed scanner,” like something you’d have in your home office.

According to Nanosphere’s website, the whole thing requires less than five minutes’ worth of hands-on time, plus 2.5 hours to get the result. That falls within the necessary time frame to diagnose sepsis and begin life-saving antibiotic therapy.

Hopefully, this is a technology that neither your family nor mine will ever need. But it’s nice to know it’s there. And now, you know how it works.

(If you’re interested in the research paper that led to this test, from company cofounders Robert Letsinger and Chad Mirkin, both of Northwestern University, you can read it here.)

Pregnancy 101: My placenta looked like meatloaf, but I wasn’t about to eat it.

By Jeanne Garbarino, Biology Editor
An historic view interpretation of the placenta (source). 

She gave me a few minutes to meet my daughter before she reeled me back into a state that was my new reality.  “You’re not finished Jeanne.  You still need to birth your placenta.”  What?!?! More pushing? But I was lucky and the efforts required to bring my placenta ex vivo were minimal. 

This is the second placenta my body helped make.  OK,
so it doesn’t EXACTLY look like meatloaf…  

The idea of a placenta, which is the only human organ to completely and temporarily develop after birth, was fascinating.  That thing sitting in a rectangular periwinkle bucket was what allowed me to grow another human.. inside of my body!  There was no way I was not going to check it out, as well as create a permanent record of its relatively short-lived existence. 

My first impression was that it looked like “meatloaf.”  Not necessarily a well made meatloaf, but perhaps one that is made by my mother (sorry mom).  But, alas, chaos reigned and I wasn’t able to really take a good look.  However, for my second birth and hence second placenta, my midwife indulged me with a more detailed look and a mini-lesson.   

Baby’s eye view:
Where geekling deux spent 39 weeks and 4 days. 

Her gloved hands, still wet with my blood and amniotic fluid, slid into the opening that was artificially created with a tool resembling a crocheting needle.  She opened the amniotic sac wide so I could get a baby’s eye view of the crimson organ that served as a nutritional trading post between me and my new bundle of joy. 

She explained that the word “placenta” comes from from the Greek word plakoeis, which translates to “flat cake” (however, I’m sure if my mom’s meatloaf was more common in ancient Greece, the placenta would be named differently).   “It’s one of the defining features of being a mammal,” she explained as I was working on another mammalian trait – getting my baby to nurse for the first time.

That was about all I could mentally digest at the time, but still, more than three years later, the placenta continues to fascinate me, mostly due to the fact that it is responsible for growing new life.  It’s a natural topic for this long overdue Pregnancy101post, so let’s dive in!
Development of the placenta
It all starts when a fertilized egg implants itself into the wall of the uterus.  But, in order to fully understand how it works, we should start with an overview of the newly formed embryo. 

The very early stages of us (and many other things that are alive).
The trophoblast invades the uterus,
leading to implantation of the blastocyst.

As soon as a male sperm cell fuses with a female egg cell, fertilization occurs and the cells begin to multiply.  But, they remain contained within a tiny sphere.  As the cells continue to divide, they are given precise instructions depending on their location within that sphere, and begin to transform into specific cell types.  This process, which is called cellular differentiation, actually seals the fate every cell in our body, sort of like how we all have different jobs – some of us are transport things, some of us are involved in policing the neighborhoods, some of us build structures, some of us communicate information, some of us deal with food, some of us get rid of waste, etc.  Every cell gets a job (it’s the only example of 100% employment rates!).

Now back to the cells in the fertilized egg.  As they start to learn what their specific job will be, the cells within the sphere will start to organize themselves.  After about 5 days after fertilization, the sphere of cells becomes something called a blastocyst, which readies itself for implantationinto the wall of the uterus. 

The act of implantation is largely due to the cells found on the perimeter of the blastocyst sphere.  These cells, collectively known as the trophoblast, release a very important hormone – human chorionic gonadotropin (hCG) – that tells the uterus to prepare for it’s new tenant.  (If you recall, hCG is the hormone picked up by pregnancy tests.)  Around day 7, the trophoblast cells start to invade the lining of the uterus, and begin to form the placenta.  It is at this point that pregnancy officially begins.  (Here is a cool video, created by the UNSW Embryology Department, showing the process of implantation.)

Structure of the placenta

Eventually the trophoblast becomes the recognizable organ that is the placenta.  Consider the “flat cake” analogy, with the top of the cake being the fetal side (the side that is in contact with the baby), and the bottom of the cake being the maternal side (the side that is in contact with the mother).     

Cross section of the placenta: Blood vessels originating from the fetus sit in a pool
of maternal blood, which is constantly replenished my maternal arteries and veins.
The red represents oxygenated blood, and the blue represents de-oxygenated blood.

Projecting from the center of the fetal side of the placenta are two arteries and one vein, coiled together in a long, rubbery rope, often bluish-grey in color.   This umbilical cord serves as the tunnel through which nutrients and waste are shuttled, and essentially serves to plug the baby into the mother’s metabolic processes.  At the umbilical cord-placenta nexus, the umbilical cord arteries and vein branch out into a network of blood vessels, which further divide into a tree-like mass of vessels within the placenta. 

These tree-like masses originating from the umbilical cord (and thus fetus) sit in a cavity called the intervillous space, and are bathed in nutrient-rich maternal blood.  This maternal blood, which provides the fetus with a means for both nutrient delivery and waste elimination, is continually replenished via a network of maternal arteries and veins that feed into the intervillous space.  Furthermore, these arteries and veins help to anchor the placenta into the uterine wall.  One of the most interesting aspects about the mother-feus relationship is that the blood vessel connection is indirect.  This helps to prevent a detrimental immune response, which could lead to immunological rejection of the fetus (sort of like how a transplanted organ can become rejected by the recipient).  
Functions of the placenta

Just like a plant needs sunlight, oxygen, and water to grow, a baby needs all sorts of nutrients to develop.  And since a baby also produces waste, by nature of it being alive and all, there is an absolute requirement for waste removal.  However, because we can’t just give a developing fetus food or a bottle, nor are we able to change diapers in utero, the onus lies completely on the biological mother. 

This is where the placenta comes in. Because the fetus is plugged into the circulatory system of the mother via the umbilical cord and placenta, the fetus is provided with necessary nutrients and a mechanism to get rid of all the byproducts of metabolism.  Essentially, the placenta acts as a waitress of sorts – providing the food, and cleaning it all up when the fetus is done eating. 

But it’s not just about nutrition and waste.  The placenta also serves as a hormone factory, making and secreting biological chemicals to help sustain the pregnancy.  I mentioned above that the placenta produces hCG, which pretty much serves as a master regulator for pregnancy in that it helps control the production of maternally produced hormones, estrogen and progesterone.  It also helps to suppress the mother’s immunological response to the placenta (along with other factors), which cloaks the growing baby, thereby hiding it from being viewed as a “foreign” invader (like a virus or bacteria). 

Another hormone produced by the placenta is human placental lactogen (hPL), which tells the mother to increase her mammary tissue.  This helps mom prepare for nursing her baby once it’s born, and is the primary reason why our boobs tend to get bigger when we are pregnant.  (Yay for big boobies, but my question is, what the hell transforms our rear ends into giant double cheeseburgers, and what biological purpose does that serve??  But I digress…)

Despite the fact that the mother’s circulatory system remains separate from the baby’s circulatory system, there are a clear mixing of metabolic products (nutrients, waste, hormones, etc).  In essence, if it is in mom’s blood stream, it will very likely pass into baby’s blood stream.  This is the very reason that pregnant mothers are strongly advised to stay away from cigarettes, drugs, alcohol, and other toxic chemicals, all of which can easily pass through the placental barrier lying between mother and fetus.  When moms do not heed this warning, the consequences can be devastating to the developing fetus, potentially leading to birth defects or even miscarriage.        

There are also situations that could compromise the functions of the placenta – restriction of blood supply, loss of placental tissue, muted placental growth, just to name a few – reducing the chances of getting and/or staying pregnant.  This placental insufficiency is generally accompanied by slow growth of the uterus, low rate of weight gain, and most importantly, reduced fetal growth.     

And it’s not just the growth of the placenta that is important – where the placenta attaches to the uterus is also very important.  When the placenta grows on top of the opening of the birth canal, the chances for a normal, vaginal birth are obliterated.  This condition, known as placenta previa, is actually quite dangerous and can cuase severe bleeding in the third trimester.  0.5% of all women experience this, and it is one of the true medical conditions that absolutely requires a C-section. 

Then, there is the issue of attachment.  If the placenta doesn’t attach well to the uterus, it could end up peeling away from the uterine wall, which can cause vaginal bleeding, as well as deprive the baby from nutrient delivery and waste disposal.  This abruption of the placenta  is complicated by the use of drugs, smoking, blood clotting disorders, high blood pressure, or if the mother has diabetes or a history of placental abruption. 

Conversely, there are times when the blood vessels originating from the placenta implant too deeply into the uterus, which can lead to a placenta accreta.  If this occurs, the mother generally delivers via C-section, followed by a complete hysterectomy. 

Cultural norms and the placenta

There are many instances where the placenta plays a huge role in the culture of a society.  For instance, both the Maori people of New Zealand and the Navajopeople of Southwestern US will bury the placenta.  There is also some folklore associated with the placenta, and several societies believe that it is alive, pehaps serving as a friend for the baby.   But the tradition that seems to be making it’s way into the granola culture of the US is one that can be traced back to traditional Chinese practices: eating the placenta. 

Placentophagy, or eating one’s own placenta, is very common among a variety of mammalian species.  Biologically speaking, it is thought that animals that eat their own placenta do so to hide fresh births from predators, thereby increasing the chances of their babies’ survival.  Others have suggested that eating the nutrient-rich placenta helps mothers to recover after giving birth.

However, these days, a growing number of new mothers are opting to ingest that which left their own body (likely) through their own vaginas.  And they are doing so though a very expensive process involving dehydrating and encapsulating placental tissue.  

Why would one go through this process?  The claims are that placentophagy will help ward of post partum depression, increase the supply of milk in a lactating mother, and even slow down the ageing process.  But, alas, these are some pretty bold claims that are substantiated only by anecdata, and not actual science (see this).

So, even though my placentas looked like meatloaf, there was no way I was eating them.  If you are considering this, I’d approach the issue with great skepticism.  There are many a people who will take advantage of maternal vulnerabilities in the name of cold hard cash.  And, always remember, if the claims sound to good to be true, they probably are!   

Thanks for tuning into this issue of Pregnancy101, and enjoy this hat, and a video!


Pregnancy 101: The science behind the wand of destiny

You hold a stick in your hands, one that you’ve just peed on. It foretells a future of sorts, for you. But the magic behind that stick is really all about a biochemical sandwich and a scientific test named ELISA.

By Jeanne Garbarino, DXS Editor


Over and over again, that was all I could say.  At the same time, I heard my husband on the other side of the bathroom door, in a very panicked voice asking, “Why are you saying oh my god? WHAY ARE YOU SAYING OH MY GOD?!?!” 

Though, he really knew why.

The events immediately preceding our synchronous freak out session involved unwrapping a small plastic wand, removing its lilac cap, and subsequently inserting its absorbent tip into my stream of pee. Yes, folks, we are talking about the wand of destiny that is the pregnancy test.

Shortly after that lucky sperm cell unites with the prized product of the ovulatory process, theegg, a woman will immediately begin to experience changes required for growing another human inside of her body. One of the first detectable signs of pregnancy is a surge in a hormone called human chorionic gonadotropin or hCG. 

Once the fertilized egg finds a cozy resting place in the wall of the uterus (a process termed implantation), the production of hCG is significantly ramped up. On average, implantation usually takes about 8-10 days for normal, healthy pregnancies[1]. It is around this point on the baby growing timeline that home pregnancy tests can begin to detect the increased presence of hCG.

Chronologically speaking, we have sex, a sperm cell fertilizes an egg cell, said fertilized egg implants into uterus, our bodies up the production of hCG, and we pee on a stick to find out if all of these things really happened. But, exactly how do these little wands of destiny work?

The technology harnessed within the pregnancy test involves a biochemical assay called a “Sandwich ELISA” (ELISA = enzyme-linked immunoabsorbant assay, more on the “sandwich” part in a bit).  The general function of an ELISA is to detect (and sometimes quantify) the presence of a substance in a liquid. In the case of a home pregnancy test, the substance is hCG and the liquid part is our urine. 
Once pee is applied to the pregnancy test, it travels along the absorbent fibers, reaching defined areas that are coated with molecules, called “capture” antibodies, specifically designed to capture hCG. To help you visualize antibody science, picture a lacrosse stick, except the mesh pocket can only fit one specific type of ball:

Now, back to the sandwich part. On a home pregnancy test, there are three separate zones containing capture antibodies. Using their sharp wit and radical humor, scientists came up with “sandwich” to describe this sort of ELISA as they felt it was analogous to two slices of bread surrounding some delicious filling. Hilarious, right?

Ok, now that you’ve calmed down from laughing so hard, let us get back to the science. The first “slice of bread” is called the reaction zone, the “sandwich filling” is called the test zone, and the “last slice of bread” is called the control zone (see figure 2). Each of these zones is coated with capture antibodies, but differ from each other in how they work. 

The antibodies on the reaction zone will capture only hCG and will detach from the strip upon exposure to urine. The test zone also contains capture antibodies that can only bind hCG, except they are securely attached to the absorbent strip, plus, there is an added dye. The control zone contains a general antibody (a lacrosse stick that will fit any ball) plus a dye, and serves to let the frantic user know that the test is functional. 

Not pregnant

As urine travels up the absorbent strip, it takes with it the reaction zone antibodies. If the urine is obtained from a pregnant woman, the reaction zone antibodies will be bound to hCG molecules found in the pee. When the pee solution reaches the test zone, there are two possible outcomes. If you are pregnant, the hCG/reaction zone antibody complexes will stick to the test zone antibodies and cause the dye to release (sometimes in a little “+” formation). If you are not pregnant, the reaction zone antibodies will just pass on through without saying hello.

The test culminates at the control zone, which is lined with general capture antibodies. Going back to picturing antibodies as lacrosse sticks, you will see that only the shape and size of the mesh pocket varies; the stick part is always the same. The general capture antibodies on the control zone will recognize and bind to the “stick” part of the reaction zone antibodies, and release a dye while doing so. This is how we know that the test worked correctly. 

Biochemically speaking, the home pregnancy test is nothing but a soggy antibody sandwich that smells of urine. From a family planning standpoint, however, this technology can impact us in ways beyond belief. But, aside from the potential for the “are you pregnant” window to induce one into a hyperventilated state, the process happening within that handheld chemistry lab is actually quite impressive. In a matter of minutes, we can know if it is ok to go out and party with friends, or if it would be a better choice to stay in and begin to nest – all from the comfort of our own bathrooms. Three cheers for science!
For a cool animation showing how a pregnancy test works, go here. Visit for more information about pregnancy tests.  Planned Parenthood offers scientifically accurate information about women’s reproductive health. For blogs, check out this list on Babble, and this list on BlogHer.      

[1]Wilcox AJ, Baird DD, Weinberg CR. Time of implantation of the conceptus and loss of pregnancy. N Engl J Med. (1999) Jun 10;340(23):1796-9.

From spiders to breast cancer: Leslie Brunetta talks candidly about her cancer diagnosis, treatment, and follow-up

According to Leslie Brunetta, she now has much more hair than she had last July.
We became aware of Leslie Brunetta because of her book, Spider Silk: Evolution and 400 Million Years of Spinning, Waiting, Snagging, and Mating, co-authored with Catherine L. Craig. Thanks to a piece Leslie wrote for the Concord Monitor (and excerpted here), we also learned that she is a breast cancer survivor. Leslie agreed to an interview about her experience, and in her emailed responses, she candidly talks about her diagnosis, treatment, and follow-up for her cancers, plural: She was diagnosed simultaneously with two types of breast cancer. 
DXS: In your Concord Monitor piece, you describe the link between an understanding of the way evolution happens and some of the advances in modern medicine. What led you to grasp the link between the two?

LB: I think, because I’m not a scientist (I’m an English major), a lot of things that scientists think are obvious strike me as revelations. I somehow had never realized that the search for what would turn out to be DNA began with trying to explain how, in line with the theory of evolution by natural selection, variation arises and traits are passed from generation to generation. As I was figuring out what each chapter in Spider Silk would be about, I tried to think about the questions non-biologists like me would still have about evolution when they got to that point in the book. By the time we got past dragline silk, I realized that we had so far fleshed out the ways that silk proteins could and have evolved at the genetic level. But that explanation probably wouldn’t answer readers’ questions about how, for example, abdominal spinnerets—which are unique to spiders—might have evolved: the evolution of silk is easier to untangle than the evolution of body parts, which is why we focused on it in the first place.

I decided I wanted to write a chapter on “evo-devo,” evolutionary developmental biology, partly because there was a cool genetic study on the development of spinnerets that showed they’ve evolved from limbs. Fortunately, my co-author, Cay Craig, and editor at Yale, Jean Thomson Black, okayed the idea, because that chapter wasn’t in the original proposal. Writing that chapter, I learned why it took so long—nearly a century—to get from Darwin and Mendel to Watson and Crick and then so long again to get to where we are today. If we non-scientists understand something scientific, it’s often how it works, not how a whole string of people over the course of decades building on each other’s work discovered how it works. I knew evolution was the accumulation of gene changes, but, until I wrote that chapter, it hadn’t occurred to me that people began to look for genes because they wanted to understand evolution.

So that was all in the spider part of my life. Then, a few months into the cancer part of my life, I was offered a test called Oncotype DX, which would look at genetic markers in my tumor cells to develop a risk profile that could help me decide whether I should have chemotherapy plus tamoxifen or just tamoxifen. The results turned out to be moot in my case because I had a number of positive lymph nodes, although it was reassuring to find out that the cancer was considered low risk for recurrence. But still—the idea that a genetic test could let some women avoid chemo without taking on extra risk, that’s huge. No one would want to go through chemo if it wasn’t necessary. So by then I was thinking, “Thank you, Darwin!”

And then, coincidentally, the presidential primary season was heating up, and there were a number of serious candidates (well, serious in the sense that they had enough backing to get into the debates) who proudly declared that they had no time for the theory of evolution. And year after year these stupid anti-evolution bills are introduced in various state legislatures. While I was lying on the couch hanging out in the days after chemo sessions, I started thinking, “So, given that you don’t give any credence to Darwin and his ideas, would you refuse on principle to take the Oncotype test or gene-based therapies like Gleevec or Herceptin if you had cancer or if someone in your family had cancer? Somehow I don’t think so.” That argument is not going to convince hard-core denialists (nothing will), but maybe the cognitive dissonance in connection with something as concrete as cancer will make some people who waver want to find out more.

DXS: You mention having been diagnosed with two different forms of cancer, one in each breast. Can you say what each kind was and, if possible, how they differed?

LB: Yes, I unfortunately turned out to be an “interesting” case. This is one arena where, if you possibly can, you want to avoid being interesting. At first it seemed that I had a tiny lesion that was an invasive ductal carcinoma (IDC) and that I would “just” need a lumpectomy and radiation. Luckily for me, the doctor reading my mammogram is known as an eagle eye, and she saw a few things that—given the positive finding from the biopsy—concerned her. She recommended an MRI. In fact, even though I switched to another hospital for my surgery, she sent emails there saying I should have an MRI. That turned up “concerning” spots in both breasts, which led to more biopsies, which revealed multiple tiny cancerous lesions. The only reasonable option was then a double mastectomy.

The lesions in the right breast were IDCs. About 70% of breast cancers are diagnosed as IDCs. Those cancers start with the cells lining the milk ducts. The ones in the left breast were invasive lobular carcinomas (ILCs), which start in the lobules at the end of the milk ducts. Only about 10% of breast cancers are ILCs.

Oncologists hate lobular cancer. Unlike ductal cancers, which form as clumps of cells, lobular cancers form as single-file ribbons of cells. The tissue around ductal cancer cells reacts to those cells, which is why someone may feel a lump—she’s (or he’s) not feeling the cancer itself but the inflammation of the tissue around it. And because the cells clump, they show up more readily on mammograms. Not so lobular cancers. They mostly don’t give rise to lumps and they’re hard to spot on mammograms. They snake their way through tissue for quite a while without bothering anything.

In my case, this explains why last spring felt like an unremitting downhill slide. Every time someone looked deeper, they found something worse. It turned out that on my left side, the lobular side, I had multiple positive lymph nodes, which was why I needed not just chemo but also radiation (which usually isn’t given after a mastectomy). That was the side that didn’t even show up much on the mammogram. On the right side, the ductal side, which provoked the initial suspicions, my nodes were clear. I want to write about this soon, because I want to find out more about it. I’ve only recently gotten to the place emotionally where I think I can deal with reading the research papers as opposed to more general information. By the way, the resource that most helped us better understand what my doctors were talking about was Dr. Susan Love’s Breast Book.  It was invaluable as we made our way through this process, although it turned out that I had very few decisions to make because there was usually only one good option.   

DXS: As part of your treatment, you had a double mastectomy. One of our goals with this interview is to tell women what some of these experiences with treatment are like. If you’re comfortable doing so, could you tell us a little bit about what a double mastectomy entails and what you do after one in practical terms?

LB: A mastectomy is a strange operation. In a way, it’s more of an emotional and psychological experience than a physical experience. My surgeon, who was fantastic, is a man, and when we discussed the need for the mastectomies he said that I would be surprised at how little pain would be involved and how quick the healing would be. Even though I trusted him a lot by then, my reaction was pretty much, “Like you would know, right?” But he did know. When you think about it, it’s fairly non-invasive surgery. Unless the cancer has spread to the surrounding area, which doesn’t happen very often now due to early detection, no muscle or bone is removed. (Until relatively recently, surgeons removed the major muscle in the chest wall, and sometimes even bone, because they believed it would cut the risk of recurrence. That meant that many women lost function in their arm and also experienced back problems.) None of your organs are touched. They don’t go into your abdominal cavity. Also, until recently, they removed a whole clump of underarm lymph nodes when they did lumpectomies or mastectomies. Now they usually remove just a “sentinel node,” because they know that it will give them a fairly reliable indicator of whether the cancer has spread to the other nodes. That also makes the surgery less traumatic than it used to be.

I opted not to have reconstruction. Reconstruction is a good choice for many women, but I didn’t see many benefits for me and I didn’t like the idea of a more complicated surgery. My surgery was only about two hours. I don’t remember any pain at all afterwards, and my husband says I never complained of any. I was in the hospital for just one night. By the next day, I was on ibuprofen only. The bandages came off two days after the surgery.

That’s shocking, to see your breasts gone and replaced by thin red lines, no matter how well you’ve prepared yourself. It made the cancer seem much more real in some way than it had seemed before. In comparison, the physical recovery from the surgery was fairly minor because I had no infections or complications. There were drains in place for about 10 days to collect serum, which would otherwise collect under the skin, and my husband dealt with emptying them twice a day and measuring the amount. I had to sleep on my back, propped up, because of where the drains were placed, high up on my sides, and I never really got used to that. It was a real relief to have the drains removed.

My surgeon told me to start doing stretching exercises with my arms right away, and that’s really important. I got my full range of motion back within a couple of months. But even though I had my surgery last March, I’ve noticed lately that if I don’t stretch fully, like in yoga, things tighten up. That may be because of the radiation, though, because it’s only on my left side. Things are never quite the same as they were before the surgery, though. Because I did have to have the axillary nodes out on my left side, my lymph system is disrupted. I haven’t had any real problems with lymphedema yet, and I may never, but in the early months I noticed that my hands would swell if I’d been walking around a lot, and I’d have to elevate them to get them to drain back. That rarely happens now. But I’ve been told I need to wear a compression sleeve if I fly because the change in air pressure can cause lymph to collect. Also, I’m supposed to protect my hands and arms from cuts as much as possible. It seems to me that small nicks on my fingers take longer to heal than they used to. So even though most of the time it seems like it’s all over, I guess in those purely mechanical ways it’s never over. It’s not just that you no longer have breasts, it’s also that nerves and lymph channels and bits of tissue are also missing or moved around.

The bigger question is how one deals with now lacking breasts. I’ve decided not to wear prostheses. I can get away with it because I was small breasted, I dress in relatively loose clothes anyway, and I’ve gained confidence over time that no one notices or cares and I care less now if they do notice. But getting that self-confidence took quite a while. Obviously, it has an effect on my sex life, but we have a strong bond and it’s just become a piece of that bond. The biggest thing is that it’s always a bit of a shock when I catch sight of myself naked in a mirror because it’s a reminder that I’ve had cancer and there’s no getting around the fact that that sucks.    

DXS: My mother-in-law completed radiation and chemo for breast cancer last year, and if I remember correctly, she had to go frequently for a period of weeks for radiation. Was that you experience? Can you describe for our readers what the time investment was like and what the process was like?

LB: I went for radiation 5 days a week for about 7 weeks. Three days a week, I’d usually be in and out of the hospital within 45 minutes. One day a week, I met with the radiology oncologist and a nurse to debrief, which was also a form of emotional therapy for me. And one day a week, they laid on a chair massage, and the nurse/massage therapist who gave the massage was great to talk to, so that was more therapy. Radiation was easy compared to chemo. Some people experience skin burning and fatigue, but I was lucky that I didn’t experience either. Because I’m a freelancer, the time investment wasn’t a burden for me. I’m also lucky living where I live, because I could walk to the hospital. It was a pleasant 3-mile round-trip walk, and I think the walking helped me a lot physically and mentally.
DXS: And now to the chemo. My interest in interviewing you about your experience began with a reference you made on Twitter to “chemo brain,” and of course, after reading your evolution-medical advances piece. Can you tell us a little about what the process of receiving chemotherapy is like? How long does it take? How frequently (I know this varies, but your experience)?
LB: Because of my age (I was considered young, which was always nice to hear) and state of general good health, my oncologist put me on a dose-dense AC-T schedule. This meant going for treatment every two weeks over the course of 16 weeks—8 treatment sessions. At the first 4 sessions, I was given Adriamycin and Cytoxan (AC), and the last 4 sessions I was given Taxol (T). The idea behind giving multiple drugs and giving them frequently is that they all attack cancer cells in different ways and—it goes back to evolution—by attacking them frequently and hard on different fronts, you’re trying to avoid selecting for a population that’s resistant to one or more of the drugs. They can give the drugs every two weeks to a lot of patients now because they’ve got drugs to boost the production of white blood cells, which the cancer drugs suppress. After most chemo sessions, I went back the next day for a shot of one of these drugs, Neulasta.

The chemo clinic was, bizarrely, a very relaxing place. The nurses who work there were fantastic, and the nurse assigned to me, Kathy, was always interesting to talk with. She had a great sense of humor, and she was also interested in the science behind everything we were doing, so if I ever had questions she didn’t have ready answers for, she’d find out for me. A lot of patients were there at the same time, but we each had a private space. You’d sit in a big reclining chair. They had TVs and DVDs, but I usually used it as an opportunity to read. My husband sat through the first session with me, and a close friend who had chemo for breast cancer 15 years ago sat through a few other sessions, but once I got used to it, I was comfortable being there alone. Because of the nurses, it never felt lonely.

I’d arrive and settle in. Kathy would take blood for testing red and white blood counts and, I think, liver function and some other things, and she’d insert a needle and start a saline drip while we waited for the results. I’ve always had large veins, so I opted to have the drugs administered through my arm rather than having a port implanted in my chest. Over the course of three to four hours, she’d change the IV bags. Some of the bags were drugs to protect against nausea, so I’d start to feel kind of fuzzy—I don’t think I retained a whole lot of what I read there! The Adriamycin was bright orange; they call it the Red Devil, because it can chew up your veins—sometimes it felt like it was burning but Kathy could stop that by slowing the drip. Otherwise, it was fairly uneventful. I’d have snacks and usually ate lunch while still hooked up.

I was lucky I never had any reactions to any of the drugs, so actually getting the chemo was a surprisingly pleasant experience just because of the atmosphere. On the one hand, you’re aware of all these people around you struggling with cancer and you know things aren’t going well for some of them, so it’s heartbreaking, and also makes you consider, sometimes fearfully, your own future no matter how well you’re trying to brace yourself up. But at the same time, the people working there are so positive, but not in a Pollyannaish-false way, that they helped me as I tried to stay positive. The social worker stopped in with each patient every session, and she was fantastic—I could talk out any problems or fears I had with her, and that helped a huge amount.

DXS: Would you be able to run us through a timeline of the physical effects of chemotherapy after an infusion? How long does it take before it hits hardest? My mother-in-law told me that her biggest craving, when she could eat, was for carb-heavy foods like mashed potatoes and for soups, like vegetable soup. What was your experience with that?

LB: My biggest fear when I first learned I would need chemo was nausea. My oncologist told us that they had nausea so well controlled that over the past few years, she had only had one or two patients who had experienced it. As with the surgeon’s prediction about mastectomy pain, this turned out to be true: I never had even a single moment of nausea.

But there were all sorts of other effects. For the first few days after a session, the most salient effects were actually from the mix of drugs I took to stave off nausea. I generally felt pretty fuzzy, but not necessarily sleepy—part of the mix was steroids, so you’re a little hyped. There’s no way I’d feel safe driving on those days, for example. I’d sleep well the first three nights because I took Ativan, which has an anti-nausea effect. But except for those days, my sleep was really disrupted. Partly that’s because, I’m guessing, the chemo hits certain cells in your brain and partly it’s because you get thrown into chemical menopause, so there were a lot of night hot flashes. Even though I’d already started into menopause, this chemo menopause was a lot more intense and included all the symptoms regularly associated with menopause.

By the end of the first session, I was feeling pretty joyful because it was much less bad than I had thought it would be. By the second week in the two-week cycle, I felt relatively normal. But even though it never got awful, the effects started to accumulate. My hair started to fall out the morning I was going to an award ceremony for Spider Silk. It was ok at the ceremony, but we shaved it off that night. I decided not to wear a wig. First, it was the summer, and it would have been hot. Second, I usually have close to a buzz cut, and I can’t imagine anyone would make a wig that would look anything like my hair. My kids’ attitude was that everyone would know something was wrong anyway, so I should just be bald, and that helped a lot. But it’s hard to see in people’s eyes multiple times a day their realization that you’re in a pretty bad place. Also, it’s not just your head hair that goes. So do your eyebrows, your eyelashes, your pubic hair, and most of the tiny hairs all over your skin. And as your skin cells are affected by the chemo (the chemo hits all fast-reproducing cells), your skin itself gets more sensitive and then is not protected by those tiny hairs. I remember a lot of itching. And strange things like my head sticking to my yoga mat and my reading glasses sticking to the side of my head instead of sliding over my ears.

I never lost my appetite, but I did have food cravings during the AC cycles. I wanted sushi and seaweed salad, of all things. And steak. My sense of taste went dull, so I also wanted things that tasted strong and had crunch. I stopped drinking coffee and alcohol, partly because of the sleep issues but partly because it didn’t taste very good anyway. I drank loads of water on the advice of the oncologist, the nurses, and my acupuncturist, and I think that helped a lot.

During the second cycle, I developed a fever. That was scary. I was warned that if I ever developed a fever, I should call the oncologist immediately, no matter the time of day or day of week. The problem is that your immune response is knocked down by the chemo, so what would normally be a small bacterial infection has the potential to rage out of control. I was lucky. We figured out that the source of infection was a hemorrhoid—the Adriamycin was beginning to chew into my digestive tract, a well-known side effect. (Having to pay constant attention to yet another usually private part of the body just seemed totally unfair by this point.) Oral antibiotics took care of it, which was great because I avoided having to go into the hospital and all the risks entailed with getting heavy-duty IV antibiotic treatment. And we were also able to keep on schedule with the chemo regimen, which is what you hope for.

After that, I became even more careful about avoiding infection, so I avoided public places even more than I had been. I’m very close to a couple of toddlers, and I couldn’t see them for weeks because they were in one of those toddler constant-viral stages, and I really missed them.

The Taxol seems to be much less harsh than the AC regimen, so a lot of these side effects started to ease off a bit by the second 8 weeks, which was certainly a relief.

I was lucky that I didn’t really have mouth sores or some of the other side effects. Some of this is, I think, just because besides the cancer I don’t have any other health issues. Some of it is because my husband took over everything and I don’t have a regular job, so I had the luxury of concentrating on doing what my body needed. I tried to walk every day, and I slept when I needed to, ate when and what I needed to, and went to yoga class when my immune system was ok. I also went to acupuncture every week. I know the science is iffy on that, but I think it helped me with the side effects, even if it was the placebo effect at work (I’m a big fan of the placebo effect). We also both had extraordinary emotional support from many friends and knew we could call lots of people if we needed anything. That’s huge when you’re in this kind of situation.

Currently, I’m still dealing with some minor joint pains, mostly in my wrists and feet. I wasn’t expecting this problem, but my oncologist says it’s not uncommon: they think it’s because your immune system has to re-find its proper level of function, and it can go into overdrive and set up inflammation in the joints. That’s gradually easing off, though.

Most people don’t have it as easy as I did in terms of the medical, financial, and emotional resources I had to draw on. I’m very mindful of that and very grateful.

DXS: You say that you had “few terrible side effects” and a “very cushy home situation.” I’m sure any woman would like to at least be able to experience the latter while dealing with a full-body chemical attack. What were some factors that made it “cushy” that women might be able to talk to their families or caregivers about replicating for them?

LB: As I’ve said, some of it is just circumstance. For example, my kids were old enough to be pretty self-sufficient and old enough to understand what was going on, which meant both that they needed very little from me in terms of care and also that they were less scared than they might have been if they were younger. My husband happens to be both very competent (more competent than I am) around the house and very giving. I live in Cambridge, MA, where I could actually make choices about where I wanted to be treated at each phase and know I’d get excellent, humane care and where none of the facilities I went to was more than about 20 minutes away.

Some things that women might have some control over and that their families might help nudge them toward:

  • Find doctors you trust. Ask a lot of questions and make sure you understand the answers. But don’t get hung up on survival or recurrence statistics. There’s no way to know for sure what your individual outcome will be. Go for the treatment that you and your doctors believe will give you the best chance, and then assume as much as possible that your outcome will be good.
  • Make sure you talk regularly with a social worker or other therapist who specializes in dealing with breast cancer patients. If you have fears or worries that you don’t want to talk to your partner or family about, here’s where you’ll get lots of help.
  • Find compatible friends who have also had cancer to talk to. I had friends who showed me their mastectomy scars, who showed me their reconstructions, who told me about their experiences with chemo and radiation, who told me about what life after treatment was like (is still like decades later…). And none of them told me, “You should…” They all just told me what was hard for them and what worked for them and let me figure out what worked for me. Brilliant.
  • Try to get some exercise even if you don’t feel like it. It was often when I felt least like moving around that a short walk made me feel remarkably better. But I would forget that, so my husband would remind me. Ask someone to walk with you if you’re feeling weak. Getting your circulation going seems to help the body process the chemo drugs and the waste products they create. For the same reason, drink lots of water.
  • Watch funny movies together. Laughter makes a huge difference.
  • Pamper yourself as much as possible. Let people take care of you and help as much as they’re willing. But don’t be afraid to say no to anything that you don’t want or that’s too much.

Family members and caregivers should also take care of themselves by making some time for themselves and talking to social workers or therapists if they feel the need. It’s a big, awful string of events for everyone involved, not just the patient.

DXS: In the midst of all of this, you seem to have written a fascinating book about spiders and their webs. Were you able to work while undergoing your treatments? Were there times that were better than others for attending to work? Could work be a sort of occupational therapy, when it was possible for you to do it, to keep you engaged?

LB: The book had been published about 6 months before my diagnosis. The whole cancer thing really interfered not with the writing, but with my efforts to publicize it. I had started to build toward a series of readings and had to abandon that effort. I had also started a proposal for a new book and had to put that aside. I had one radio interview in the middle of chemo, which was kind of daunting but I knew I couldn’t pass up the opportunity, and when I listen to it now, I can hear my voice sounds kind of shaky. It went well, but I was exhausted afterwards. Also invigorated, though—it made me feel like I hadn’t disappeared into the cancer. I had two streams of writing going on, both of which were therapeutic. I sent email updates about the cancer treatment to a group of friends—that was definitely psychological therapy. I also tried to keep the Spider Silk blog up to date by summarizing related research papers and other spider silk news—that was intellectual therapy. I just worked on them when I felt I wanted to. The second week of every cycle my head was usually reasonably clear.

I don’t really know whether I have chemo brain. I notice a lot of names-and-other-proper-nouns drop. But whether that’s from the chemo per se, or from the hormone changes associated with the chemically induced menopause, or just from emotional overload and intellectual distraction, I don’t know. I find that I’m thinking more clearly week by week.

DXS: What is the plan for your continued follow-up? How long will it last, what is the frequency of visits, sorts of tests, etc.?

LB: I’m on tamoxifen and I’ll be on that for probably two years and then either stay on that or go onto an aromatase inhibitor [Ed. note: these drugs block production of estrogen and are used for estrogen-sensitive cancers.] for another three years. I’ll see one of the cancer doctors every three months for at least a year, I think. They’ll ask me questions and do a physical exam and take blood samples to test for tumor markers. At some point the visits go to every six months.

For self-care, I’m exercising more, trying to lose some weight, and eating even better than I was before.

DXS: Last…if you’re comfortable detailing it…what led to your diagnosis in the first place?

LB: My breast cancer was uncovered by my annual mammogram. I’ve worried about cancer, as I suppose most people do. But I never really worried about breast cancer. My mother has 10 sisters and neither she nor any of them ever had breast cancer. I have about 20 older female cousins—I was 50 when I was diagnosed last year–and as far as I know none of them have had breast cancer. I took birth control pills for less than a year decades ago. Never smoked. Light drinker. Not overweight. Light exerciser. I breastfed both kids, although not for a full year. Never took replacement hormones. Never worked in a dangerous environment. Never had suspicious mammograms before. So on paper, I was at very low risk as far as I can figure out. After I finished intensive treatment, I was tested for BRCA1 and BRCA2 (because mutations there are associated with cancer in both breasts) and no mutations were found. Unless or until some new genetic markers are found and one of them applies to me, I think we’ll never know why I got breast cancer, other than the fact that I’ve lived long enough to get cancer. There was no lump. Even between the suspicious mammogram and ultrasound and the biopsy, none of the doctors examining me could feel a lump or anything irregular. It was a year ago this week that I got the news that the first biopsy was positive. In some ways, because I feel really good now, it’s hard to believe that this year ever happened. But in other ways, the shock of it is still with me and with the whole family. Things are good for now, though, and although I feel very unlucky that this happened in the first place, I feel extremely lucky with the medical care I received and the support I got from family and friends and especially my husband.
Leslie Brunetta’s articles and essays have appeared in the New York Times, Technology Review, and the Sewanee Review as well as on NPR and elsewhere. She is co-author, with Catherine L. Craig, of Spider Silk: Evolution and 400 Million Years of Spinning, Waiting, Snagging, and Mating (Yale University Press).

HIV+ doesn’t mean you can’t have children

Prenatal care and treatment access are big factors.

By Laura Newman     

Last week, the media got all excited about the possibility of a cure for HIV perinatal transmission. What was lacking was the recognition that the public remains largely ignorant about HIV in pregnant women. Yet with good wellness care, prevention, HIV testing, and medication,HIV  transmission from mother to child can be close to zero. The public needs to know that women who are pregnant and HIV positive can also live good-quality lives, as can their children.

CDCgraphicHIVThanks to Dr. Judy Levison, an obstetrician/gynecologist whose career centers on caring for HIV-pregnant women, I began to learn how scientific advancements in HIV-care make it possible for pregnant women with HIV and HIV-positive men to have children and not transmit the virus to their newborns. In the midst of this learning experience, I found out that a young woman I know, “Angela*,” was HIV positive and wanted to plan a pregnancy. I was shocked; I knew plenty of gay men with HIV, but rarely had I met a woman who had contracted the virus. Planning a pregnancy while being infected with HIV was something that I couldn’t imagine.

“Angela” is married and has lived with HIV for some years, with a low viral load by taking good care of herself and taking recommended antiretroviral therapy, when needed. She sought artificial insemination, one of several options available to HIV-affected couples. It worked. When she was planning her pregnancy, her parents were resistant. They worried that even though she is healthy now, that might change. They couldn’t imagine being saddled with taking care of a young child. Her parents’ resistance reminded me of the old coming-out stories we used to hear and how parents adapted to learning their child is gay. To their credit, both parents soon rose to the occasion. Angela and her spouse have a healthy toddler, and the grandparents love spending time with him.

Angela’s story isn’t everyone’s story. The hubbub at the recent 20th Conference on Retroviruses and Opportunistic Infections was not on the “functional cure” of the baby born to a pregnant woman with HIV, but on why, in this day and age, the mother doesn’t seem to have received the recommended prenatal care and antiretroviral therapy herself. Under what circumstances did she deliver? How did mom and baby get lost in the healthcare system? It’s far too easy to be captivated by a potential breakthrough and forget that plenty of people don’t get access to basic science-backed care that prevents HIV transmission in the first place.

As I describe below and as Angela’s experience illustrates, a lot of evidence shows that it is very safe for women with HIV to get pregnant, have healthy babies, and not transmit HIV to their children. Unfortunately, for many pregnant women with HIV, harsh judgments and inaccurate assumptions often carry the day. Let’s just say that HIV-positive moms and their kids have not earned the acceptance allotted to, say, a Magic Johnson, who has had HIV for decades, and with good HIV and wellness care, lives a good-quality life.

These inroads in science-based HIV prevention and care that have helped Johnson so much lag behind in poor and minority communities in the United States and low-resource countries around the world. HIV disproportionally affects African-Americans in the United States, and access to care, Medicaid cuts, and poverty reduce the chance that many people in need will receive good state-of-the-art prevention (regular testing, practicing safe sex, not sharing drug needles) and wellness care. Perinatal transmission could well rise in these communities.

Facing down ignorance

At first, being pregnant was not easy for Angela — not because her pregnancy was hard (it was not) — but because of the uneasiness some of her coworkers expressed about her becoming pregnant as an HIV-positive woman. Even though Angela worked in healthcare, some of her coworkers thought she had no business being pregnant. When she complained to her supervisor, the manager urged Angela to take it upon herself to educate staff about scientifically proven treatments for pregnant women with HIV that help moms stay well and prevent transmission to the baby. Angela asked instead for an in-service training, which was scheduled. Her colleagues’ attitudes turned around after the in-service.

It meant a lot to her to change the culture.

Angela had a normal term delivery, gave birth to a healthy baby, who is now a toddler, with no sign of HIV infection. Angela’s viral load remains undetectable. They are living healthy, high-quality lives like many other families, moms, and children.

The parents and prenatal planning

The ideal in the setting of HIV infection is that both partners are involved in preconception planning. Prevention of transmission of HIV from an HIV-positive father to an HIV-negative mom and fetus is now possible. The door is now open to HIV-positive men and women who want families but have HIV. Any plans they had to become parents have not simply vanished.

HIV research has advanced to the point that we now know that if HIV-positive individuals work with knowledgeable medical providers and have good access to proven practices, parents and children do quite well. Essential practices include:

  • Before trying to conceive, people should take antiretroviral drugs and have their infection under control, shown by a low viral load or undetectable levels of the virus (“undetectable” levels vary, depending on the lab) in their blood;
  • Couples are instructed to have unprotected sex only when the woman is ovulating. Current guidelines recommend using an ovulation prediction kit, which you can purchase at most drugstores.
  • Artificial insemination is another option that HIV-affected couples are using, as Angela did.
  • HIV testing is recommended routinely for all pregnant women, as well as for all non-pregnant adults and teens.
  • If a woman learns during her pregnancy for the first time that she is HIV infected, she can work with her healthcare provider to stay healthy, prevent mother-to-child transmission, and prevent passing HIV to her partner.


In general, people infected with HIV who are not pregnant begin taking anti-HIV medications when their CD4 counts fall below 500 cells/mm3 (HIV targets these immune cells and destroys them, compromising a person’s immunity). The medication regimen during pregnancy depends on whether or not you are taking medication to improve your own health or just your baby’s. In many cases, healthy women delay starting antiretroviral medication until the second trimester, which is when all women should be on HIV medication. However, HIV medication and interactions with other drugs and the fetus are complicated and require consultation with a physician. If women are diagnosed later in a pregnancy, they should start HIV drugs then. You can find detailed recommendations here.

During childbirth, women whose viral loads are still undetectable can have normal vaginal deliveries. However, according to the National Institutes of Health and other authorities, scheduled cesarean delivery at 38 weeks of gestation is recommended to reduce perinatal transmission of HIV for women with HIV-RNA levels >1,000 copies/mL or unknown HIV levels near the time of delivery, regardless of whether they were taking recommended antiretroviral drugs during pregnancy. The guidelines state that when there is a low rate of transmission (viral loads lower than 1000 copies/mL), the benefits of a scheduled c-section are unclear. Dr. Levison, an obstetrician/gynecologist at Baylor College of Medicine, Houston, TX, says that in her practice, women rarely need a cesarean section.

The newborn child

In the United States, breastfeeding is discouraged because HIV can be transmitted in breast milk. According to the Centers for Disease Control and Prevention (CDC), the risk for HIV transmission goes up as much as 45%. However, the topic of breastfeeding remains controversial. In healthy women with no HIV history, the broad consensus is that breastfeeding is best, giving babies excellent nutrition and helping the infant bond with mom. And many parts of the world have problems with sanitation and dirty water, making breastfeeding preferable to mixing formula. Outside of the US, according to Levison, in the UK, breastfeeding guidelines are more liberal. Furthermore, in some cultures, women are afraid not to breastfeed for fear that they will be outed as having an HIV infection, according to Levison, so many treating physicians adapt practice to the culture, preferences of the mom. Internationally, for example, in Africa, women often breastfeed and remain on antiretroviral drugs during that time. Formula is also costly. In the US, poor moms are eligible for formula through the federal Women’s Infants and Children’s nutritional support program.

Besides breastfeeding, HIV-positive moms need to know that pre-chewing of food before feeding baby is a transmission risk.

As soon as a woman goes into labor and during childbirth, the infantmust begin a six-week course of the antiretroviral medication zidovudine (AZT). Current guidelines also state that the baby should be tested for HIV at 14 to 21 days, at 1 to 2 months, and again at 4 to 6 months. If the viral load remains undetectable after two tests, the baby is considered to not have gotten HIV.

Resolving resource disparities

The moms, dads, and kids with HIV have enormous potential to live healthy lives for decades on proven antiretroviral drugs.

In fact, a December 2012 CDC Fact Sheet states that the number of women with HIV giving birth in the United States increased approximately 30% from 6,000 to 7,000 in 2000 to 8700 in 2006. During that same time frame, the estimated number of perinatal infections per year in all 50 states and 5 dependent areas continued to decline.

It’s not all good news, though, because of marked disparities in resource allocation and pre- and perinatal care. According to CDC data, 63% of perinatal infections were in blacks/African-Americans; 22% were in Hispanics/Latinos, and 13% were in whites. That leaves a lot of work to be done in enhancing targeted prevention programs.

Another recent milestone is that the US Preventive Services Task Force is finally about to endorse universal HIV testing, long after the CDC backed such a move in 2006. This milestone is important to because it is also linked to health reform.  All public and private health plans are required to provide coverage for U.S. Preventive Services Task Force-recommended preventive services without patient copayments.

With this availability, perhaps women might learn about an HIV infection before they become pregnant, giving them time to have their own treatment in place before it is too late to protect the baby. The case report of the baby cured of HIV gives a lot of hope, but even more preferable would be preventing HIV infection in the first place, through safe sex and not exchanging needles. Once people become infected, for whatever reason, their lives should no longer be viewed as if they are at in a holding pattern until death.

The world needs to know that just like every other mom, dads and pregnant women with HIV can parent children, stay healthy, and not transmit the virus to their babies. Paramount in this is universal HIV testing for adults and teens, prevention programs, and ensuring scientifically proven treatment of the mother before, during, and after her pregnancy.

*Named changed to protect identity. Continue reading