This post was inspired by a bathroom door in a California State Park

We decided to visit a state beach and I had to the use the bathroom, which was (of course) something less than luxurious. There was a lot of graffiti on the door, but the most prominent was scrawled in permanent marker stating: “Hope you had your Hep C shot”. A more enlightened soul wrote beneath it “You can’t get Hep C from a toilet”. It’s a good thing I didn’t have a writing implement on me or I would have further defaced state property and written in large letters: “THERE IS CURRENTLY NO VACCINE FOR HEPATITIS C”.

I have heard a lot of very interesting stories lately about disease transmission and prevention. The vandalism in the bathroom was just the proverbial straw that broke the camel’s back. So to the set the record straight, here are a few facts:

Immunity- Immunity can be defined as “The condition of being immune, the protection against infectious disease conferred either by the immune response generated by immunisation or previous infection or by other nonimmunologic factors.” Since immunity is a condition of the body characterized by the immune system’s ability to recognize and mobilize a response to fight off an infection, it is based on an individual’s health and previous infection status.

For the most part, you can’t transfer your immunity to someone else because immunity depends on whether their immune system will recognize a particular antigen. One exception is breastfeeding because the antibodies from the mother’s bloodstream can transfer through her milk to her baby. But you can’t get a vaccine and pass the immunity it gives you to someone else- no matter what this column in Popular Science says about the oral polio vaccine in developing countries. (I’m still in awe that this sort of thing was published. You can’t pass your immunity to others and thereby strengthen the whole community. If that were the case there would be no need for high vaccination rates. Face+palm.) Other people would have to either acquire and recover from the infection or receive a vaccine to stimulate their immune systems to fight off an invading pathogen.

It also means that a vaccine is specific to a certain antigen. You can’t get a vaccine designed to create immunity for one disease and have it work against something completely different- which is where this news story gets off track when it claims that a flu vaccine would have saved this boy when he was infected with both flu and the deadly MRSA bacteria.

Herd immunity- Herd immunity is the idea that when a high level of vaccine coverage is reached (somewhere between 80-99%), that a particular illness will no longer strike a population and that this will protect those who can’t or won’t be vaccinated. Of course, levels need to be high- which is why the assertion that genital warts infections on the decline from the HPV vaccine is questionable. Low rates of coverage, by definition can’t confer herd immunity. However, other factors could have influenced the decline of genital warts infections like the advent of federal support for comprehensive sex education programs which occurred around the same time. Herd immunity also means that if the CDC is correct about the efficacy of flu vaccine (50-60% most of the time), even in a good year we won’t be able to achieve herd immunity, so please be careful with young babies and the immunocompromised.

Asympotmatic transmission/non-classical symptoms- You have to be very careful when you are around anyone immunocompromised or very young or old because vaccinated individuals who do contract an illness may not display classical symptoms (i.e. symptoms you would see in an individual who is not vaccinated who contracts the disease). Pertussis (commonly known as “whooping cough”) is one of these. Vaccinated individuals who develop pertussis often don’t display the “whooping” cough or may be completely asymptomatic. Measles is another. Vaccinated individuals who contract measles often don’t have a rash, but may have a stuffy nose and general malaise. (This called modified measles.) 

How often does this happen? Well, it’s hard to say. (After all, how often do you go into your doctor or pediatrician and say, “Even though nothing appears to be wrong, could you please run a complete set of tests to make sure that it’s not a case of non-classical pertussis or modified measles?”) A few years ago a survey taken during a pertussis outbreak in California showed that in 9 counties between 44 and 83 percent of the pertussis cases were in vaccinated individuals. The Journal of Emerging Infectious Diseases has study from Israel where a very young baby died of pertussis contracted at a daycare center where all the children and staff were fully vaccinated. Some of the children who tested positive for pertussis did not meet the WHO’s diagnostic criteria for the disease, yet still had it. The Journal of Infectious Diseases contains an article on two fully vaccinated doctors who had measles without the rash- the only reason that anyone considered testing them is because they had both been exposed to the disease. We do know that even individuals with non-classical presentation can pass the virus. It does happen, but on a wider scale it’s hard to quantify. So  the PSA is please exercise caution at all times.

Vaccine schedule- A vaccine schedule is what shots you get when. Here in America, I think we kind of assume that our vaccine schedule given by the American Academy of Pediatrics is the “gold standard”. There actually is no one vaccine schedule that has been agreed upon to be the “best”. The AAP’s schedule is pretty similar to Canada’s and Great Britain’s, though there are some notable differences. In Great Britain, they don’t routinely vaccinate for varicella (chicken pox) because when the varicella virus is not present, it increases the chance of older people developing shingles. If you take a look at the vaccine schedules throughout Europe, you’ll find that it’s a mixed bag. In some countries tetanus is recommended only for at risk populations. In several first world countries like France, Italy, Ireland, the Netherlands and Germany they don’t have rotavirus on their schedules (as of 2010). Varicella is absent from many countries vaccine schedule. Other countries add in diseases that are of special concern to them like Japanese encephalitis in many Asian countries. In the United States, there is kind of a philosophy that if there is even a relatively small risk for a disease, that we should err on the side of vaccinating for it. In other countries, a disease that has a relatively minimal risk may be viewed as having little upside for routine vaccination.

So why do we vaccinate for all these diseases, how do they spread and how do the vaccines impact transmission? Well, this isn’t an  exhaustive list, but here are a few. You may get a few surprises…

Tetanus- I’ve heard the wildest stories on when you need a tetanus shot. If you scrape your hand on a metal locker backstage in an auditorium, if you get a small cut from a nail holding down carpet inside a house, if you cut your hand on glass in your kitchen sink. One mom told me that after her child got a really bad scratch from a cat, she was told by a doctor at the ER that her kid needed a tetanus shot. All of the above scenarios are extremely unlikely to even impossible to lead to tetanus. Here’s why: Tetanus is caused by a bacteria called clostridium tetani. It lives in the feces of animals and flourishes in wet, warm and environments, especially like pastures. It causes infection when it enters the bloodstream through a deep wound. So rust and nails or other metal objects  actually have nothing to do with the infection itself. A rusty nail is a sign that the environment could be wet enough for the bacteria to flourish and stepping on one could cause a deep puncture wound that introduce the bacteria into the bloodstream. It’s not a communicable disease.

Polio- Quick: who invented the vaccine that is credited with eliminating polio? You said Jonas Salk didn’t you? Scientists and researchers now believe that it was a combination of Salk’s inactivated polio vaccine (IPV- the one you get through a shot) and Sabin’s oral polio vaccine (OPV- sugar cubes). (And depending on who you talk to, they might even give more credit to Sabin.) Salk had better backing because of his connection with Basil O’Connor, head of the National Foundation for Paralytic Polio (now the March of Dimes). Another reason the OPV has fallen off the radar in the US is that it was taken out of circulation in this country in 2000 because of vaccine acquired paralytic polio. In other countries, they still favor the OPV because the risk of provocative polio. (Provocative polio is when something like an injection or surgery during the high season for enteroviruses increases the chances of developing polio.)

Measles- Yes, this one can actually cause death, but who is most at risk may be a little surprising. According to the CDC, approximately 450 people used to die annually of measles in the pre-vaccine era. (Comparable to the number of people who die of salmonella poisoning annually.) Diagnoses of measles have been on the decline since the advent of the measles vaccine, but now those who do get it are more likely to die. The vaccine campaign has targeted young children, but adults (especially over age 30) are much more likely to develop complications or die. (The other group at greater risk are those with HIV/AIDS because they have compromised immune systems.) The other thing that may surprise you is the role of vitamin A in preventing complications with measles. The WHO recommends that all cases of measles be treated with vitamin A.

Mumps/Rubella/Varicella- Wow, wow, wow. I can not believe the number of times I have heard people say that massive numbers of children used to die from mumps and rubella. Mumps and rubella were actually not added to the vaccine schedule because of a high risk of death in children. In fact the WHO classifies, both mumps and rubella in as mild illnesses in children- it’s adults that tend to be the actual concern. They were actually added into the vaccine schedule because in teenagers and adults they can cause reproductive harm. In adolescent boys, mumps can sometimes infect the testicles causing impaired fertility. Deafness is another rare side effect of mumps, again more common in adults. Rubella itself isn’t the concern, it’s congenital rubella syndrome (CRS) that causes disability and sometimes even death. If a pregnant woman contracts rubella she can potentially pass the disease onto her unborn child and it can cause problems like blindness, deafness, developmental delays, and heart malformations. Varicella (chicken pox) is again a generally mild illness in children, but can be deadly especially for the immunocompromised. For women who do not have immunity, contracting varicella during the first 20 weeks of pregnancy carries a small risk of birth defects called congenital varicella syndrome.

Hepatitis B- I hear people say that you can be picking up trash along the side of the road, get stuck by a stray drug needle, develop hepatitis B and then DIE. This is not an accurate reflection of the transmission pattern of hepatitis B. Though there are a few very, very rare exceptions, hepatitis B is primarily transmitted in three ways: sharing needles during illicit drug use, high-risk sexual behaviors and maternal transmission either at birth or in the first few years of life. The good news is that in adults, 90% of hepatitis B infections will clear on their own without any complications. But for children it can lead to a chronic infection and possible further complications. Overall, there are relatively few children who have hepatitis B. Child-to-child transmission is well documented, in developing countries, but among developed nations child-to-child transmission of the infection is extremely rare. Because of the possibility that a mother could be carrying the disease and not aware of it, it has been added to many vaccine schedules.

Rotavirus-This story definitely paints a sensational picture of rotavirus, but it’s on the melodramatic side. In developing countries, diarrheal illnesses are a significant source of mortality because of malnutrition, dehydration, and lack of access to healthcare. However, in the US and other developed countries, the goal of rotavirus vaccination is actually to reduce hospitalizations due to severe rotavirus. However, there is a trade-off because some rotavirus vaccines like RotaTeq carry an increased of gastrointestinal illness over no rotavirus vaccine- though hospitalization is statistically less likely.

If Jane the Virgin Were My Client


My husband and I started watching “Jane the Virgin” when it first came out a couple of years ago. We’ve been pretty big fans. I also have to compliment the show’s writers because their depiction of birth and breastfeeding was closer to life than many I’ve seen on TV. However, I have to take issue with Jane’s weaning of her son Matteo. Jane ends up exclusively pumping for a while when Matteo refuses to nurse after she goes to a writers’ retreat for her class, but comes to a point where pumping at night is becoming a drain. She talks about it with Matteo’s father, Raphael and Raphael (who has absolutely zero experience with breastfeeding) says that Jane should just wean Matteo. Jane asks about what if Matteo loses a few IQ points or gets sick. Raphael says that Matteo just started solids and he’ll be fine. So Jane weans.

Now first of all, let me say that weaning is a very personal decision for every mother. However, Jane wasn’t limited to just two options (keep pumping round the clock or wean). I will be doing one-on-one classes for those who desire it once I complete my certification, so let’s imagine for a few minutes that Jane and Raphael came to me for some help.

Me: So Jane, what brings you here today?

Jane: Well, I’m exhausted. My son Matteo stopped nursing a few months ago and I’ve been exclusively pumping ever since. I’m waking up at night to pump, I’m in grad school and I’m working and everything is just wearing me out.

Raphael: I think she should just wean. Matteo has started solids and I think Jane needs to take care of herself more. Lots of babies are formula fed. I think Matteo needs a mother who is well-rested and feeling well more than breastmilk.

Me: Wow, Jane! Exclusive pumping can be a hard road, so good job to you! I can see that you both care a great deal about Matteo and want what’s best for him. And Raphael, I can tell you really care a lot about Jane. I can understand why you’re so tired, Jane. That’s a lot you have on your plate! So, I’m looking at your intake form and you say that Matteo is healthy and not having any problems with weight or nutrition. Jane, how do you feel about pumping?

Jane: Well, I loved breastfeeding, but he just stopped taking the breast. Day time pumping isn’t too bad. It’s the night time pumping sessions that are killing me.

Me:  And you indicated that you haven’t been in touch with any breastfeeding help until now.

Jane: Yeah, that’s right.

Me: And your milk supply has been steady?

Jane: Yeah.

Me: Well Jane, I have a very simple solution for you. Stop pumping at night.

Jane: What?!

Me: Since Matteo has started solids and he’s doing well and you’re not having any supply issues, you could just stop pumping at night. It’s expected that babies will start sleeping at longer stretches by this time anyway. Just pump for him during the day. Breastfeeding isn’t an all or nothing endeavor. Any milk he gets from you will still increase his immune function. As for IQ, breastfeeding has been shown to be beneficial to cognitive development, but intelligence is influenced by many factors. Watch him to make sure that he’s getting enough to eat and keep in touch with his pediatrician in case he does need supplementation, but even with eliminating night pumping sessions you may not need to introduce any other supplements. Would like to try to get Matteo breastfeeding again so that when you are together you can feed him instead of pumping?

Jane: Is that even possible?!

Me: Well, I can’t make any promises, but some babies have been known to refuse the breast when they feel a big stress from separation or an upset to their daily routine, like a big move. But it is possible to get them to nurse again with some patience. Skin-to-skin contact and keep offering the breast are strategies that can help get a baby back to nursing.

Jane:  That would be great!

Me: OK then! I’m also going to give you the contact info for your local La Leche League group. You don’t have to go it alone. Sometimes we get the impression from family, friends, health care professionals and even TV shows that breastfeeding is like a rare orchid that blooms only when the conditions are perfect. The reality is that everything doesn’t have to perfectly for you to breastfeed your baby. You may encounter problems, but there are a lot of ways to solve these problems before weaning.

Jane: I can’t believe I almost weaned Matteo when there was such a simple solution.

Me: You’re doing a great job, Jane. And now you’re going to have a great support system to help you.


Everything You’ve Never Been Told About SIDS

I know this isn’t the most fun topic. On the other hand, SIDS remains one of the leading causes of death for infants under one year of age and the information that we as parents are given is usually vastly oversimplified and even misleading. I personally feel like every parent has the right to know clinical information about SIDS, how it is diagnosed and what we may possibly do to prevent it.

What is SIDS?

SIDS is one diagnosis under a larger umbrella of diagnoses called Sudden Unexpected Infant Death (SUID). SUID includes infant death from a number of different causes including accidental suffocation/strangulation and even child abuse.

How is SIDS diagnosed?

This is a very subjective question. Officially a diagnosis of SIDS is made when a death does not meet any other known criteria such as an illness, accident or child abuse. The definition of a clinical case of Sudden Infant Death Syndrome is defined as the sudden death of an infant younger than 1 year that remains unexplained after a thorough investigation, which should include an autopsy, examination of the scene of death and review of clinical history. With such a broad clinical definition and no known cause, diagnosing SIDS can be highly subjective.

The medical community has been getting better about more precise diagnosis of SIDS, but it hasn’t always been that way. According to the Centers for Disease Control’s manual for investigating SIDS cases, many of the cases that were once diagnosed as SIDS were probably more accurately diagnosed as accidental strangulation or suffocation, meaning that the much lauded decrease in SIDS may not be an actual decrease, but simply more careful diagnosis of accidental deaths.

Clinicians and law enforcement have been subject to their own biases in diagnosing SIDS. A young African American couple was charge with murder and child abuse when their baby died, though there were no signs of abuse or neglect. The charges were eventually dismissed, but only after the parents had spent six months in jail because they were unable to post bond. On the opposite end of the spectrum are white, married, middle class women like Mary Beth Tining and Waneta Hoyt whose babies died under suspicious circumstances with indications of child abuse, however, these deaths were initially attributed to SIDS. However, these were later found to be infanticide when more careful investigation was performed.

OK… That sounds kind of vague, how do they tell the difference then?

So to get technical, in a case of actual SIDS (as opposed to abuse)  findings have shown petechiae (small, red spots that are a symptom of bleeding beneath the skin) on parts of the lungs and heart with no difference in severity between babies who died face up, face down, or side-lying. 

The petechiae are a symptom of what doctors call central airway failure and are not consistent with airway obstruction as is the case with suffocation or asphyxiation. What the autopsies seem to be showing is that SIDS is not caused by the baby’s airway being blocked, but rather, the respiratory system shutting down from within and that it happens regardless of the baby’s sleeping position. According to Medscape’s overview of clincial presentation and physical examination of SIDS , other findings of clinical presentation before and after death include:

  • Many SIDS babies had seemingly minor cold/flu symptoms, lethargy, irritability, or changes in crying in the weeks preceding death. 
  • Infants who have died of SIDS often display a frothy, blood-tinged discharge from the nose or mouth at the time of discovery. 
  • Petechiae on the thymus, pleura, and epicardium. 
  • Baby was put down to sleep and found pulseless and apneic (stopped breathing during sleep, failed to arouse from sleep). 
  • After thorough examination and autopsy, no cause of death is found.

These symptoms do bear a resemblance to autoimmune encephalitis, an infection of the brain:

According to the online Merck Home Manual, encephalitis is caused by bacterial and viral infections or autoimmune reactions triggered by infections or vaccine reactions.

Still there are a number of biases that remain diagnosis, a baby found sleeping on its stomach may be assumed to be a SIDS case when there could be other explanations, or SIDS may be ruled out because a baby was found on its back. A co-sleeping baby could be diagnosed as SIDS even if there could be other explanations. Current recommendations on signs indicating child abuse and neglect are also highly subjective. For example, having a baby outside the hospital or a late arrival to the hospital does not mean that the parents are abusive or neglectful and having a baby in a hospital does not mean the parents are caring and attentive. (Just like being young and African-American doesn’t make parents abusive and being married, white and middle class doesn’t make a woman a caring and attentive mother.)

What about co-sleeping?

There is a strong bias against co-sleeping in Western cultures that has likely influenced existing medical literature. In his paper on SIDS research, Dr. James J. McKenna of the University of Notre Dame pointed out that if co-sleeping were truly as hazardous as medical authorities say, then none of us would be here because our ancestors would have died. (By the way, whatever your thoughts on co-sleeping, this paper is a very interesting read and I highly recommend it. It is pretty long and detailed, so be prepared to read it over a couple of sittings.)

He explains that in Europe and North America co-sleeping fell out of favor due to social and cultural pressures rather than any actual health issues. Among impoverished families, infanticide was rampant. Many parents tried to avoid jail by claiming they had accidentally overlaid the baby in their sleep. This became so much of a problem that during the 17th century, England, Germany and France all passed legislation mandating jail time if a parent was found in bed with a child under two years of age. 

In fact, babies protest very loudly if their breathing is compromised in any way. According to Dr. McKenna, it is likely that only a parent who is intoxicated or otherwise unusually lacking in their ability to wake up would not notice a screaming baby next to them.

Moralists of this era were also concerned with the “sexual purity” of children and thought that getting children out of their parents’ bed would remove the temptation for incest. Also, a growing philosophical movement that placed the spousal relationship in competition with that of the mother and child also contributed to the end of the family bed in Western society.

Because of the stigma attached to co-sleeping, adequate research comparing co-sleeping and separate sleeping infants and SIDS is difficult. Many parents sleep apart from their babies because they have been told it is safer and many who do co-sleep don’t “advertise” for fear of criticism from family, friends, doctors and even child protective services.

Between the stigma attached to co-sleeping and the massive amount of funds involved, Dr. McKenna’s opinion is that it would be extremely difficult to find the 10,000 co-sleeping infants needed to compare with an equal sized group of infants who sleep apart from parents for a study to really get an accurate picture of the risks.

There is statistical and laboratory evidence that co-sleeping may prevent SIDS. McKenna found that when babies and mothers sleep together, they tend to match sleep patterns and even bring each other out of apneas (periods when breathing stops). He and his colleagues also found that internationally, among cities where SIDS deaths are the lowest, co-sleeping rates are some of the highest. Among native peoples who practice co-sleeping there has not been an increased rate of SIDS observed.

Historical evidence also presents problems with the idea that SIDS is related to co-sleeping. Early terms for SIDS included “crib death” and “cot death”, which imply that the baby died in a crib or infant sleeping cot. These terms would not likely have come into common usage if the typical case of SIDS was found in the parents’ bed.

What’s an ALTE?

An ALTE is an “apparent life-threatening event” in an infant characterized by the sudden onset of a combination of symptoms, including apnea, change in color (pallor, redness, cyanosis (a.k.a. blueness), plethora (excessive blood leading to swollen or flushed presentation), change in muscle tone (floppiness, rigidity), choking, gagging, or coughing. Earlier in the 1980’s it was thought that these incidents might be a SIDS case in process, but research couldn’t provide a definite link between the two. The exact incidence is unknown, though estimated to be somewhere between 0.5% and 6% with most cases occurring in infants under ten weeks of age. Boys are more frequently affected than girls. (This is a similar time frame as SIDS, which peaks at 2 and 4 months.) Babies older than 2 months who had an ALTE or who had recurrent ALTE episodes had a higher incidence of significant disorders.

About 50% of ALTE cases have known cause, which means that ongoing observation may be needed to prevent further illness, injury or death. In another 50% the cause is found. GERD, febrile seizures and heart abnormalities are common causes.

Many babies who experience an ALTE don’t have any long term problems. But an ALTE can be a sign of a more serious condition or the possibility of SIDS. From the above cited  AAFP article: “Various studies report the percentage of children who died of SIDS with a previous ALTE to be between 4 and 10 percent, although one study that focused on children of nurses reported that 27 percent of SIDS victims exhibited previous ALTEs.”

One hypothesis I have is that the AAP’s new recommendation that babies sleeping in their parents’ room can reduce the risk of SIDS is that when a baby is in under closer surveillance, episodes of ALTE may be more likely to be noticed and prompt care may reduce the risk of SIDS. Nothing proven, but a hypothesis.

Breastfeeding the Spina Bifida Baby, Works Cited

Works Cited

Adzick, N. Scott. “Fetal Surgery for Myelomeningocele: Trials and Tribulations.” Journal of Pediatric Surgery, vol. 47, no. 2, Feb. 2012, pp.  273–281. National Center for Biotechnology Information. DOI: 10.1016/j.jpedsurg.2011.11.021.

“Birth Defects Homepage- Data and Statistics”. Centers for Disease Control, 29 February 2016.

“Prenatal Care for Myelomeningocele (Spina Bifida)”. C.S. Mott Children’s Hospital, 2016.

“Delivery of a Baby With Spina Bifida”. YouTube, uploaded by UM Health System 12 May 2012.

Gilbert, Scott F. “Formation of the Neural Tube”. National Center for Biotechnology Information. Accessed August 16, 2016.

“Spina Bifida”. Stanford Medicine, 2016.

“Spina Bifida: Risk Factors.” Mayo Clinic, 27 August 2014.

“Spina Bifida Fact Sheet”. National Institutes of Neurological Disorders and Stroke, 23 February, 2015. 

Pruitt, Lisa J. “Living With Spina Bifida: A Historical Perspective”. Pediatrics, vol. 130, no. 2 August 1, 2012. DOI: 10.1542/peds.2011-2935.

“UNC Fetal Care: Spina Bifida”. University of North Carolina School of Medicine, 2016.

Riordan, Jan. Breastfeeding and Human Lactation. Jones and Bartlett: 2005.

Stoppler, Melissa Conrad and Davis, Charles Patrick. “Quad Marker Screening Test”, Accessed August 17, 2016.

Weissinger, Diane, West, Diana, and Pitman, Teresa. The Womanly Art of Breastfeeding. Random House: 2004.

Breastfeeding the Spina Bifida Baby, Part 4


Since many babies who undergo prenatal surgery will be born prematurely, mothers who have elected for this procedure should receive guidance on how to prepare for breastfeeding a preterm infant. Many neonatal intensive care units are encouraging kangaroo care and the benefits of skin-to-skin contact will help the baby with the process of learning to breastfeed and increase the mother’s milk supply. Premature infants frequently have difficulty latching and sucking because they lack the fat pads in their cheeks that help fill the space in a full-term baby’s mouth. A nipple shield may help make it easier for the preterm baby to latch onto the nipple and stay latched on. Breast compressions can help increase the milk flow during feeding if the baby’s suck is weak (Weisinger, West, Pitman, 350).


The mother of a spina bifida baby will be exclusively pumping anywhere from a few days to a couple of weeks to bring in and maintain her milk supply since her baby will not be able to feed at the breast shortly before the initial surgery and during recovery. To keep an adequate milk supply, the mother should pump at least 8-12 times a day, with at least one expression at night. Since pumping is not baby driven, short pumping sessions in addition to regular 8-12 expressions will help drive milk production up in a fashion similar to a newborn’s frequent feedings. Exclusive pumping takes a great deal of dedication, but with frequent expressions a mother can maintain an abundant milk supply (Weisinger, West and Pitman, 341). The milk that the mother expresses during this time will be given to her baby in the NICU (often through a gavage tube) and set her supply for future breastfeeding after the baby is released from the hospital. Milk pumped at home should be taken to the hospital in sterile containers and stored in a cooler with ice packs in transit.

Most high level NICU’s will have high quality breast pumps that mothers can use at the hospital or rent and take home. Hand pumps can be used at home as well, and can be convenient for nighttime pumping. The importance of pumping as stimulation to signal the breasts to produce an abundant milk supply can not be underestimated by the mother. Galactagogues like teas and supplements may be helpful in increasing milk supply, however they are not a substitute for regular, frequent pumping and may even be unnecessary for many women (Weisinger, West and Pitman, 355). After the baby is released from the hospital, the mother may still need to pump temporarily to keep her supply if the baby needs additional surgeries for tethered cord or a shunt revision.


Hospital staff may be tempted to look at breastfeeding as something that would be ideal, but is not a high priority considering the serious nature of the baby’s condition. However, for a mother and baby undergoing the stress of surgery and a multi-week NICU stay, breastfeeding offers many other unique benefits. A baby who is receiving breast milk, either pumped or from the breast, is less likely to contract common hospital borne infections like necrotizing enterocolitis. Babies who are put to the breast for skin-to-skin contact during breastfeeding experience endorphins that help strengthen bonding with the mother. This is especially important since the baby and mother will have more separation than a mother and baby would under normal circumstances. The endorphins released during breastfeeding from the skin-to-skin contact with the mother can help with a faster recovery from the trauma of surgery. Breastmilk is far more digestible for an infant and has a complete nutrient content, which eliminates problems like constipation that can accompany iron supplementation (Weisinger, West, Pitman, 345).

Encouraging the mother of a spina bifida baby to breastfeed has the added benefit of helping to reframe the experience of having a special needs child. Family, friends and even some healthcare professionals often focus on how the child’s diagnosis sets her apart from other children. Breastfeeding the baby with spina bifida focuses the parents on the ways in which their baby is like any other baby, with similar physical and emotional needs. With some adaptations their child can do many things that other children are able to, starting with breastfeeding.


The needs of breastfeeding spina bifida babies and their mothers are varied. The different methods of delivery along with the unique challenges of prenatal or postnatal surgery and hydrocephalus can make breastfeeding seem daunting or even impossible. However, with adequate care, most babies with spina bifida will be able to breastfeed. Supporting mothers in breastfeeding during the postpartum period will help establish breastfeeding patterns that will allow the baby with spina bifida to keep breastfeeding as long as he and the mother wish to. Like any other baby, infants with spina bifida have bodies that are prepared to breastfeed and receive breastmilk, not artificial feeding substitutes. Nurses, lactation consultants, doulas and other breastfeeding help can help mothers and spina bifida babies with the breastfeeding process so that they can experience the same benefits that breastfeeding offers any other mother and baby.

Breastfeeding the Spina Bifida Baby, Part 3


Challenges with positioning will be one of the first difficulties to overcome. There are three types of mother-baby dyads with spina bifida and each will have different challenges: vaginal delivery with postnatal surgery, cesarean delivery with postnatal surgery and cesarean delivery following prenatal surgery. Mothers who deliver vaginally will probably have the fewest challenges with breastfeeding as they may be able to initiate breastfeeding more easily and have fewer positioning challenges. Full term cesarean delivery will present a number of challenges as both the mother and baby will be recovering from surgery.

Mothers and babies who undergo prenatal surgery may face some of the greatest challenges as the prenatal surgery carries a high risk of preterm birth. Mothers frequently experience premature rupture of membranes and are at high risk for other complications such as placental abruption. Most of these mothers will have the difficulty of both cesarean surgery and preterm birth.

Other issues mothers of spina bifida babies will face include pumping to bring in and maintain their milk supply during the first few weeks of their baby’s life as the baby will be under sedation recovering from surgery. Once the baby has recovered from surgery enough to feed at the breast, the baby may need help with establishing a good latch if breastfeeding was not attempted during the first few hours of life.


Mothers who deliver vaginally will not have the difficulties of breastfeeding after a cesarean surgery, however they will need to adapt to the baby’s surgical site. Before the surgery to close the lesion, a cross cradle position can be used if no pressure is placed on the lesion. After surgery, a side-lying position can be used or possibly a semi-reclined position if there is good head support for the baby and care is taken to avoid neck extension (Riordan, 561). In the author’s experience, a modified Australian hold in which the baby’s neck and head are carefully supported with both of the mother’s hands can be used as well.

A mother who delivers via cesarean section with the baby undergoing postnatal surgery will need to adjust position to accommodate both her surgical scar on the abdomen and the baby’s surgical scar on his back. Side-lying will probably be the most viable position for these mothers and babies. Many Level IV NICU’s do not have the option for parents to room-in with their babies, so having a bed to breastfeed on may not be a default accommodation for the baby’s room. Parents should ask about the possibility of moving a portable cot into the baby’s room for breastfeeding. If the hospital is not accommodating for a side-lying position, the mother and any breastfeeding helpers should see what can be done to creatively help position both the mother and the baby in a way to safely allow breastfeeding.

Mothers who deliver via cesarean after undergoing prenatal surgery may be able to use the traditional “football hold” since the baby’s surgical scar will have healed in the womb. Side-lying will also be useful for these mothers and babies when the baby can be put to the breast.

Burping the baby with spina bifida is sometimes a concern as no pressure can be placed on the surgical site until the baby has recovered from surgery. Babies who have a lesion in the lower back area can often be burped by patting the middle back area as long as there is no pressure on the surgical site. For babies who have a lesion that covers the middle back area, gently rubbing between the shoulders or rocking on a firm surface can help release air bubbles (Riordan, 561).

Advanced hydrocephalus in which the baby’s head has become severely enlarged is rarely seen in developed countries because of the availability of shunt surgery. However, a baby that has advanced hydrocephalus might be able to breastfeed in a side-lying position with a pillow to support the baby’s large, heavy head. For babies who undergo shunt placement surgery, care must be taken not to place any pressure on the incision sites as the pain could cause the baby to develop an aversion to breastfeeding. The neurosurgeon may prescribe specific limits to head elevation to prevent the ventricles of the brain from decompressing too quickly. Rapid decompression could cause regurgitation while breastfeeding, so feedings should be frequent and on demand (Riordan, 561). Babies may have to have an empty stomach before going into shunt surgery, so the mother may have to pump during the preoperative period and during recovery. The neurosurgeon will give the parents specific instructions for their baby’s surgery. Shunts can last anywhere from a few weeks to a few years, so some mothers may find themselves breastfeeding through more than one surgery during the baby and toddler years.

Breastfeeding the Spina Bifida Baby, Part 2

Diagnosis often occurs prenatally through the quad marker screening test and/or ultrasound. The quad marker screening test is 85 percent accurate for detecting open neural tube defects. If an abnormal result is found on the quad marker screening, an amniocentesis may be recommended to verify the results (Stoppler and Davis). Despite a high level of accuracy, some cases of myelomeningocele will go undetected until birth. Treatment for myelomeningocele and other severe cases of spina bifida typically involves surgery within first few days of life. Additional surgery for placement of a ventriculoperitoneal shunt for hydrocephalus may take place within the first few days or weeks of life as well.

Alternatively, some mothers and babies may undergo prenatal surgery to close the lesion between 19 and 25 weeks gestation. In this procedure, surgical incisions are made in the mother’s uterus and surgery is done on the fetus in utero. The incisions in the uterus are then closed up and the mother is placed on bed rest for the remainder of the pregnancy. Babies who undergo this procedure are usually born prematurely. All babies who undergo prenatal surgery for myelomeningocele are born via cesarean section because of the danger of uterine rupture from the surgical scars. (Adzick). Results of the prenatal surgery have been mixed with some children showing above average mobility and reduced need for shunts while others continue to have poor mobility and require shunts for hydrocephalus. The long-term prognosis for babies who undergo prenatal surgery is unknown as the number of children who have had the procedure is small and the procedure is still very new. 

Though the level of function varies greatly from individual to individual, most people with spina bifida have normal IQ’s and can lead active lives with adaptations. The factors that cause the varying levels of function and ability in individuals with myelomeningocele and other severe forms of spina bifida are still not fully understood. Many doctors ascribe to a “two-hit hypothesis” that the first damage to the spinal column comes from the neural tube failing to close and subsequent damage occurs from exposure of the open lesion to amniotic fluid, direct trauma, hydrodynamic pressure, or a combination of factors (Adzick). However, the varying levels of function in individuals with myelomeningocele and the mixed results for prenatal surgery indicate that the factors contributing the severity of disability may be many and complex.

Research into treatment and outcomes for spina bifida is relatively new because of a lack of available data for several decades. Historically, treatment for babies with spina bifida was withheld because doctors believed that quality of life was too poor to allow them to survive. Until the 1960’s, it was standard practice among physicians to withhold surgery from all babies with spina bifida until the age of two because it was believed that only the strongest would survive and should receive treatment. Shunt placement surgery and clean intermittent catheterization became advanced enough during the 1970’s to allow individuals with spina bifida to not only survive but become more active, however, doctors continued to advocate for withholding treatment based on the philosophy that quality of life was too poor to allow these infants to live. In addition to withholding treatment, doctors often heavily sedated spina bifida newborns so they would not request feeding, ensuring death (Pruitt). Because of biases in administering care, having a surviving population of individuals with spina bifida large enough for research is a relatively new development and is only the beginning of understanding this condition and the possibilities available to individuals with spina bifida.

Despite the abundance of evidence that individuals with myelomeningocele can lead active and productive lives, many physicians remain ignorant of this fact. Parents who receive a prenatal diagnosis of myelomeningocele are frequently pressured by doctors to abort. Doctors will often mislead parents by describing a worst case scenario and telling them that it is a prognosis that can not be changed and that there is no hope for the child to lead a normal life. (Pruitt).


There are differing opinions on whether babies undergoing postnatal surgery should be delivered vaginally or by cesarean section. For example, Lucile Packard Children’s Hospital Stanford recommends cesarean delivery for fear that vaginal birth will increase the risk of damage to the spinal cord (Stanford Medicine). But according to the University of North Carolina School of Medicine, the recommendation of cesarean delivery is based on older literature which may not account for improved neonatal surgical techniques, nor does this recommendation improve the outcome for babies in all cases. This older literature also demonstrated only modest gains in function for spina bifida babies delivered via cesarean. C.S. Mott Children’s Hospital  recommends vaginal delivery whenever possible and states that current medical literature shows no improvement for spina bifida babies delivered by cesarean.

If hydrocephalus has advanced in the womb to the point where the head circumference has become very large, a cesarean delivery may be indicated. Another reason for cesarean delivery is breech presentation, which spina bifida babies are at an increased risk for (University of Michigan Health System). Many spina bifida babies do end up being delivered by cesarean. Doulas, lactation consultants and other birth and breastfeeding professionals should be prepared to help mothers of spina bifida babies with the breastfeeding complications that can accompany cesarean birth.

Breastfeeding the Spina Bifida Baby, Part 1

This is part of a series of posts taken from a research paper I wrote for my certification to become a breastfeeding educator. 

Though myelomeningocele and other forms of spina bifida are relatively common, information on breastfeeding infants with these defects is limited. In their 2007 study, Hurtekant and Spatz state, “At present, no research has examined the unique breastfeeding needs of a mother and her infant with spina bifida.” Though a few babies with very severe hydrocephalus which frequently accompanies spina bifida may not be able to breastfeed because of neurological impairments, the vast majority of babies with spina bifida can breastfeed (Riordan, 561). Breastfeeding will be just one of many normal activities that will simply require some initial adaptations for the baby with spina bifida. Parents should be encouraged to keep in mind that despite their baby’s condition, breastfeeding is still normal and very beneficial.


Spina bifida encompasses a class of neural tube defects characterized by an opening in the spine. This occurs when the posterior neural tube fails to completely close- usually around the 28th day of pregnancy. There are four different types of spina bifida: Occulta, closed neural tube defects, meningocele and myelomeningocele.

Spina bifida occulta is the mildest form and is relatively common, occurring in approximately 10 to 20 percent of the population. Spina bifida occulta is usually asymptomatic as the skin covers the defect. This form of spina bifida may cause some degree of disability, however such an occurrence is very rare.

Closed neural tube defects are characterized by malformations of fat, bone, or meninges. Closed neural tube defects may have few or no symptoms or may sometimes cause incomplete paralysis with urinary and bowel dysfunction. A dimple, tuft of hair or birthmark may be present at the skin covering the site of the malformation.

Spina bifida meningocele consists of defects in which spinal fluid and the layers of protective tissue surrounding the spinal cord called meninges protrude through an abnormal vertebral opening. These malformations contain no neural elements like nerves and may or may not be covered by a layer of skin. Spina bifida meningocele may cause few or no symptoms or it may result in complete paralysis and bladder and bowel dysfunction.

Spina bifida myelomeningocele is the most severe form of spina bifida and results in an open neural tube defect where the spinal column or neural elements protrude through the opening in the spine. Individuals with this form of spina bifida generally have some form of complete or partial paralysis in the lower body as well as bladder and bowel dysfunction. This form of spina bifida is usually accompanied by a brainstem malformation called Chiari II malformation in which the brainstem protrudes down into the neck or spinal column area. This often causes a buildup of excessive spinal fluid in the skull, a condition called hydrocephalus. Many individuals with spina bifida utilize clean intermittent catheterization to empty their bladders and prevent renal failure (National Institutes of Neurological Disorders and Stroke).

Spina bifida- especially myelomeningocele- is a relatively common disabling birth defect affecting approximately 1 in every 2,858 births. (Centers for Disease Control). The cause of spina bifida is not fully understood at this point, though neural tube closure seems to be governed by both environmental and genetic factors. Genes, such as Pax3, sonic hedgehog, and openbrain, are essential for the formation of the mammalian neural tube, but dietary factors, such as cholesterol and folate intake play an important role. It has been estimated that 50% of human neural tube defects could be prevented by a pregnant woman taking supplemental folic acid. To this end, the U.S. Public Health Service recommends that all women of childbearing age take 0.4 mg of folate daily to reduce the risk of neural tube defects during pregnancy (Gilbert). However, other factors have been linked to spina bifida such as gestational diabetes, obesity, elevated body temperature during the early weeks of pregnancy and certain anti-seizure medications (Mayo Clinic).

What I Wish People Were Aware of About Spina Bifida

“…extreme disability is not synonymous with unhappiness and we are only at the beginning of finding ways of developing the capabilities of these patients….”- Dr. Robert Zachary, pioneer of spina bifida care

It’s October and among other health causes, it’s Spina Bifida Awareness Month. Yes, I know folic acid. But only about 50% of spina bifida cases can be attriubted to folic acid deficiency. There’s so much talk about prevention of neural tube defects, but very little about living well with spina bifida. The medical community still views spina bifida largely as a horrible burden to children and their families rather than a challenge to be overcome.

October also Breast Cancer Awareness Month and the campaigns I see for breast cancer involve all kinds of empowering slogans and marketing- pink and courageous, “fight like a girl”. What if we were to approach spina bifida as a challenge, not a death sentence? So I guess here is what I want people to be aware of this month (and every other month for that matter):

  • Unless other serious defects are present, a baby with spina bifida will not be a vegetable. He will probably have average intelligence and with some adaptations can get out and do lots of things. We live in era of wheelchair basketball and therapeutic horseback riding. Your kid has lots of opportunities.
  • Research on what it means to live a life with full treatment of spina bifida is relatively new since it has only been in the last 30-35 years that doctors have been routinely treating cases of spina bifida. Before that, babies with spina bifida were deemed  a lost cause. In other words, there’s a lot we still don’t fully understand about the treatment of spina bifida and plenty to still find out.
  • Spina bifida is really a spectrum. What will your child be like? Well she may have any of the associated problems in varying levels. Some kids walk, some don’t, some have a shunt, some don’t, some don’t need catherization, some do, and on and on…
  • If your child has a spina bifida, you as the parent will have a huge impact on how your child views himself and his condition. If this is a source of shame or embarrassment for you, your kid will learn to think of it the same way. If you approach it as a variation that requires some adaptations and that your child is still capable of a normal life, your child will see that too.

Yes, we want to prevent neural tube defects, but when we start talking about awareness, I think that it’s important that we start becoming aware of the capabilities of individuals with disabilities. Having a disabled child is not a fate worse than death. I guess what I’m advocating is an awareness of determination and joy that can accompany having a child with spina bifida.


DDT Is Not A Magic Bullet

Sometimes I will post things I have written for my MPH classes if I think the subject is interesting or timely. This is a forum post I wrote for my Environmental Health class about whether we should bring back DDT, an insecticide used to combat malaria in the United States that was later banned because of environmental hazards.

I have been inclined to believe that it is not a good idea to reintroduce DDT because of its hazards. The fact that it has been banned in the United States indicates that there must have been significant adverse effects. However, I believe that forming a truly informed stance requires looking at both sides of an issue and seeking out information that may undermine  my current stance on a subject. So I went looking for articles on the benefits of DDT and why it should be used against malaria in places like Africa. A couple of examples of articles supporting DDT that I found were “Thirtieth Anniversary Of Misguided Ban On DDT Without This Pesticide, Millions Die Of Malaria, Says Health Group; Senate To Extend Ban” by the American Council on Science and Health (2002) and “What the World Needs Now is DDT” (Rosenberg, 2004). The main arguments I found supporting the use of DDT were as follows:

  • DDT is very effective at eliminating malaria and is responsible for the elimination of malaria transmission in the United States and other countries.
  • There is no evidence that DDT poses harm to humans, while malaria is a serious health threat known to take many lives.
  • DDT is the most cost effective way to eliminate malaria in developing countries.

So my next task was to look at each of these arguments and find out what evidence there was for and against them. So starting with my first bullet point:

DDT is very effective at eliminating malaria and is responsible for the elimination of malaria transmission in the United States and other countries. DDT is very effective at killing mosquitos and it was a big part of the malaria elimination campaign in the United States. I think the issue is whether DDT is the most crucial component of malaria elimination. Much of malaria elimination campaign in the United States was focused on spraying DDT, but it also included drainage and removal of mosquito breeding sites (Centers for Disease Control, 2012). So while DDT was widely used during the malaria elimination campaign altering the environment to discourage mosquito breeding was also a part of fighting malaria. I know this seems like heresy, but I have to wonder if drainage, better indoor plumbing and sewage systems and the removal of mosquito breeding sites may have actually provided a longer term solution to malaria transmission. After all, DDT hasn’t been used in the United States for decades and we still have mosquitos, but malaria isn’t a serious public health threat here. So just because we used DDT to fight malaria transmission, doesn’t necessarily mean that it was the most effective tool against malaria or that it will save Africa from malaria without other efforts like drainage and sewage control. Moving on to the next point…

There is no evidence that DDT poses harm to humans, while malaria is a serious health threat known to take many lives. People usually take this to mean that something is proven to be safe, but that’s not what “no evidence of harm” means. “No evidence of harm” was the same strategy used to convince the public that tobacco didn’t increase the risk of cancer and that the use of lead in gasoline, plumbing and paint was benign. “No evidence of harm” can simply mean that no studies have been done on the effects that a substance has on humans. In reading through the report on DDD, DDE and DDT from the Agency for Toxic Substances and Disease Registry (ASTDR), I found that for many side effects on humans and animals there were simply no known studies available.

For example, in relation to the effects of DDT and its related compounds DDD and DDE on kidneys, the report says “No studies were located regarding renal effects in humans after oral exposure to DDT, DDE, or DDD.” This doesn’t mean that DDT has been proven to be safe for human kidneys, it just means that there aren’t any studies that have looked at that aspect yet. If DDT is harmful to the human renal system, not having any studies won’t actually change its toxicity; all it means is that studies haven’t been conducted on it. (However, studies on rats have shown some adverse effects to rodent kidneys.)  The report does cite some studies which have shown a higher incidence in lung cancer to some workers who are exposed to DDT and others showing elevated levels of liver enzymes with high exposure. DDT is known to cause adverse neurological effects in both humans and animals, though as the report states, “Few studies have explicitly evaluated neurotoxicity in humans following chronic exposure.” Again, it doesn’t mean that DDT has no neurological effects on humans at chronic exposure levels, simply that there is very little research on the subject. According to the report from the ATSDR, DDT is known to cause harm to the endocrine and reproductive systems of animals and there is research pointing to immunological damage as well.

But for the sake of argument, let’s assume that DDT is only harmful to animals and will eliminate malaria transmission without extensive work on sewage and drainage systems or other measures. Does this make it a good strategy for malaria control in humans? I think to answer this question we need to consider how far we really can remove ourselves from the health of the environment. If the water, air, plants and animals around us are damaged from toxic chemicals, will we really be spared any ill effects? I think this question is especially relevant when we are talking about about Sub-Sahara Africa where many people still rely on subsistence farming. Also, Sub-Sahara Africa is home to many rare and endangered plants and animals. If DDT is used in these countries and it does eliminate malaria transmission, will it cause more trouble by damaging the land and animals? If people rely on the health of their cattle, pigs and chickens to sustain them and these animals become sick and can’t reproduce, we might be looking at a situation where people could suffer further from poverty, malnutrition and starvation. Because DDT persists for long periods of time in the environment, if it is used in areas with rare and endangered species it could cause irreparable damage to the ecosystems of these places. And heading into the homestretch on what has become a near treatise at this point…

DDT is the most cost effective way to eliminate malaria in developing countries. The issue of DDT and malaria elimination gets at the heart of a lot of issues about what it means to actually help people in developing countries. If you think about it, we are presuming a lot when we in America discuss how to solve a problem in another country with a different culture thousands of miles away. Mosquito nets are an example of another strategy that is popular with Westerners as a way for people in Africa to fight malaria, but in some areas malaria is so common and most cases go away on their own that most people don’t even consider using a mosquito net. Sonia Shah (2010), author of The Fever: How Malaria Has Ruled Humankind for 500,000 Years, compares malaria in these regions to the flu in North America- it can kill, but many recover without ill effects. She compares mosquito nets in these areas to face masks in cold and flu season. If you handed out free face masks to everyone in your neighborhood during cold and flu season to wear every time they go out in public, how many people would wear them, even if it would stop transmission of the disease? And even if everyone used a mosquito net, the nets wear out and need to be replaced, so they’re not a long term solution. I think the issue of DDT is much the same way. We used DDT as did many other countries, and so we assume that developing nations should too. But it may not be the best answer for them.

I think Shah really sums it up best when she writes, “Perhaps what we need is a whole new approach. Instead of masterminding solutions for distant problems and then handing them down from on high — as we do not just in our anti-malaria efforts but in a variety of aid programs aimed at extreme poverty — we should empower the poor to come up with their own solutions, and then help figure out how to implement them. Such a process might not lead to grand, magic-bullet solutions. More likely, we’d get micro-solutions, variable from locale to locale, from village to village. But we’d be supporting self-reliance and building goodwill along the way. And we’d surely avoid the wastefulness — and really, the affront — of befuddling communities with “gifts” that many neither want nor use.” While she is referring specifically to mosquito nets and malaria, I think the same applies to DDT.

Also, mosquitos may be carriers of disease, but they are also part of the eco-system as are any naturally occurring pathogen or pest, whether it be viruses, bacteria, fleas or rats. The idea of DDT is that if we can kill the mosquitos we can stop the spread of malaria. But here’s the thing, mosquitos have been on the Earth for tens of millions of years. In order to do that they have had to be pretty adaptable and even with their primitive biology they are already starting to outsmart us. In some areas, cases of DDT resistance has been reported in mosquitos (Dasgupta, 2012).

DDT is not a magic bullet. If DDT is employed for malaria control, it should be used with extreme caution and to a minimum to prevent resistance and side effects, much like antibiotic stewardship. Dasgupta’s (2012) conclusion from the World Bank’s blog sums it up better than I can: “Continued use or reintroduction of DDT in malaria control should call for a careful country-by-country assessment of costs and benefits based on a country’s circumstances. Other vector control measures, such as larvicidal and environmental management may also be -necessary – when appropriate – based on scientific evidence.”


Agency for Toxic Substances and Disease Registry (n.d). DDT, DDE and DDD: Health effects. Retrieved from

American Council on Science and Health Staff(2002, June 12).  “Thirtieth Anniversary Of Misguided Ban On DDT Without This Pesticide, Millions Die Of Malaria, Says Health Group; Senate To Extend Ban”. Retrieved from

Centers for Disease Control and Prevention (2012). Elimination of Malaria in the United States (1947 — 1951). Retrieved from

Dasgupta, Susmita (2012, October 23). “Health costs and benefits of DDT use in malaria control and prevention.” Retrieved from

Rosenberg, Tina (2004, April 11). What the world needs now is DDT. New York Times Magazine. Retrieved from

Shah, Sonia (2010, May 2). In Africa, anti-malaria mosquito nets go unused by recipients. Los Angeles Times. Retrieved from