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. www.cdc.gov/ncbddd/birthdefects/data.html
“Prenatal Care for Myelomeningocele (Spina Bifida)”. C.S. Mott Children’s Hospital, 2016. http://www.mottchildren.org/conditions-treatments/prenatal-care-myelomeningocele-spina-bifida
“Delivery of a Baby With Spina Bifida”. YouTube, uploaded by UM Health System 12 May 2012. http://www.youtube.com/watch?v=UQCA-6qlbiM
“Spina Bifida”. Stanford Medicine, 2016. www.stanfordchildrens.org/en/topic/default?id=spina-bifida-90-P02415
“Spina Bifida: Risk Factors.” Mayo Clinic, 27 August 2014. www.mayoclinic.org/diseases-conditions/spina-bifida/basics/risk-factors/con-20035356
“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. www.med.unc.edu/fetalcare/conditions-we-care-for/spina-bifida
Riordan, Jan. Breastfeeding and Human Lactation. Jones and Bartlett: 2005.
Stoppler, Melissa Conrad and Davis, Charles Patrick. “Quad Marker Screening Test”, MedicineNet.com. www.medicinenet.com/quad_marker_screen_test/page2.htm. Accessed August 17, 2016.
Weissinger, Diane, West, Diana, and Pitman, Teresa. The Womanly Art of Breastfeeding. Random House: 2004.
PREMATURITY AND PRENATAL SURGERY
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.
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.
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).
BIRTH AND ITS IMPACT ON BREASTFEEDING
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.
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 FORMS AND COMPLICATIONS
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).
“…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.
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 http://www.atsdr.cdc.gov/toxprofiles/tp35-c3.pdf
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 http://acsh.org/news/2002/06/10/thirtieth-anniversary-of-misguided-ban-on-ddt-without-this-pesticide-millions-die-of-malaria-says-health-group-senate-to-extend-ban
Centers for Disease Control and Prevention (2012). Elimination of Malaria in the United States (1947 — 1951). Retrieved from https://www.cdc.gov/malaria/about/history/elimination_us.html
Dasgupta, Susmita (2012, October 23). “Health costs and benefits of DDT use in malaria control and prevention.” Retrieved from http://blogs.worldbank.org/developmenttalk/health-costs-and-benefits-of-ddt-use-in-malaria-control-and-prevention
Rosenberg, Tina (2004, April 11). What the world needs now is DDT. New York Times Magazine. Retrieved from http://www.nytimes.com/2004/04/11/magazine/what-the-world-needs-now-is-ddt.html?_r=0
Shah, Sonia (2010, May 2). In Africa, anti-malaria mosquito nets go unused by recipients. Los Angeles Times. Retrieved from http://articles.latimes.com/2010/may/02/opinion/la-oe-shah-20100502
At what point does “quality of life” kick in? And at what point are you as a parent taking on more than you can handle? This is really the big question for everyone who has faced this issue of having more children after having a child with some kind of congenital anomaly.
When a prenatal diagnosis of myelomeningocele is made, doctors often recommend that the parents abort because the child will be too much of a burden and have no quality of life- maybe even be a vegetable. (By the way, the whole “vegetable” thing is completely untrue unless the baby has other defects that are incompatible with life. Most individuals with myelomeningocele have average mental function and can lead active lives with adaptive devices. The whole “vegetable” thing is a holdover from when the medical community discouraged providing any care for babies born with any form of spina bifida because they were believed to be hopeless cases. It’s only in the last thirty years or so that our enlightened medical practitioners have decided that children with spina bifida have a right to live.) My son isn’t a vegetable. If we’re going to start comparing him to food, he’d be an energy drink, bright and bubbly with a jolt that will leave you exhausted if you overdo it.
So let’s talk about what quality of life even means. To the parent whose baby has been diagnosed with myelomeningocele, quality of life is presented as full use of the limbs, bowel and bladder and not having hydrocephalus. If that’s quality of life then why are so many people who have full use of their bodies and are free from hydrocephalus so miserable? On the other side, why did Christopher Reeve keep living life as a quadriplegic? I personally think a lot of the issue of “quality of life” is actually wrapped up in us not wanting to deal with the unique challenges of disabled individuals.
I used to dodge the “what about having another child” question by saying that we only had a 2-5% chance of having another baby with myelomeningocele. It’s not like we were both carriers for a genetic disorder and had a 1 in 4 chance with every baby of the condition recurring. But then I heard about a new program at the university I went to. One of the dance education students had developed a program for teaching ballroom dance to individuals with special needs. She was inspired because she has a brother and two sisters with Fragile X Syndrome, a genetic condition that can cause mental and intellectual impairments and autistic behaviors. That gave me pause. Apparently the parents had decided to have more children despite the genetic condition, and they were very loving and supportive of all their children.
Does any child who is loved unconditionally really have a quality of life so terrible that they shouldn’t be born? Many children with “perfect” bodies aren’t as lucky to be welcomed with that kind of love. On the other hand, if you knew that you and your spouse were both carriers for something like cystic fibrosis, would you choose to give a child a body with impairments that would one day take their life? (And then on the other hand, individuals with cystic fibrosis are living longer than ever before, especially at some of the best cystic fibrosis centers in the country.) There is no one-size fits all answer for everyone on this very personal subject.
We’ve just had our third child and yes, she and her second oldest brother are both free from any neural tube defect. This is probably not our last baby. Every time we have had another child we have found ourselves in a strange place where we would rather not have another with myelomeningocele, but if we did, we know what that would mean and would welcome that child into our family.
We can’t say that we wish our oldest had been born without it. There is a certain beauty that comes in raising a child who needs a different approach. Seeing our son walk and start to get potty trained are exhilarating victories because we were told he would never be able to do those things at all. We’ve worked hard and come up with some unique strategies to make those things happen. We’re very proud of who he is and what he has done. It’s a different kind of accomplishment than it has been with our second. It’s a certain kind of victory that most people will never know.
The most frustrating thing is that we have encountered so many doctors and specialists who don’t see it this way and believe that our son’s condition and his life are a tragedy. As a mother of a child with a birth defect, I wish more people, especially medical personnel understood that quality of life is more than a normally functioning body.
…And a medical droid is probably not necessary either.
Googling stuff on your smartphone can be a great way of quickly finding out interesting facts. However, it’s not a great method for finding out the risks and benefits of a procedure in the middle of labor. Even if you are planning to have a completely natural birth, it’s a really good idea to know about the different procedures you may have to make a decision about. So to get you started, here is a brief intro to procedures that most low-risk women probably won’t need during labor.
Labor and birth on back– Imagine you’re heading out on a long hike up a big mountain with a backpack filled with useful equipment like snacks, water, a first-aid kit and a rain jacket. The pack is definitely heavy, but manageable. Now imagine that someone adds several large stones to your filled backpack. Hiking that mountain is going to be a lot harder. That’s what labor and birth are like lying down. Midwives and natural birth oriented obstetricians like Dr. Michel Odent and the late Dr. Bradley have been big advocates of upright birth for a long time. Women birthing on their backs or in a semi-recumbent hospital bed position actually has nothing to do with safety or biology, but caught on among obstetricians in the United States during the 19th century because the position was more convenient for them to use forceps during the delivery. A little research that has been done has shown a decreased use of forceps and a decrease in severe tears in women who give birth in a squatting position. On the other hand, if you are more comfortable delivering in a lying down or semi-recumbent position, more power to you. (A great example is actually Cindy Crawford in her interview for More Business of Being Born).
Induction/augmentation– Here’s the thing, the pregnant woman’s body is designed to keep the baby in until the baby is ready to come out. Your baby and your uterus are on their own timetable that doesn’t necessarily coincide with a doctor’s. Also, a woman’s body releases catecholamines during labor if the woman feels threatened. This pauses labor so the woman can escape from the threat. So when we hear about “failure to progress”, “stalled labor” or other terminology, it may have more to do with the environment at the birthing place or an unrealistic timetable than something being “wrong” with the mother, the baby or the labor. Induction of labor increases the risk of c-section, premature birth, uterine rupture, infection, low heart rate, umbilical cord prolapse, and postpartum hemorrhage. Ideally, OB-GYN’s would take the advice of the late Dr. Bradley: “As my chief pointed out, ‘An obstetrician should have a big rear end and the good sense to sit calmly thereupon and let nature take its course.”
Cesarean- My husband is here today because his mother was able to have an emergency cesarean for placenta previa with his older sister. What I’m talking about here are unnecessary cesareans- which are actually a very real public health issue. As many of you have heard, almost one-third of all babies in the United States are delivered through Cesarean section. However, according to WHO, cesarean surgery is medically indicated in only about 10%-15% of deliveries. In fact, OB-GYN’s often perform cesareans simply because they don’t want to wait around for a mother to deliver vaginally and believe it to be a low-risk procedure. Some have tried to claim that cesarean birth is safer than vaginal birth, however research does not bear that out as certain types of serious birth injuries are the same for planned cesareans or vaginal births. Other scholars have tried saying that the WHO’s upper threshold of 10-15% cesarean rate should be increased to 20%, however, this does not account for the increased public health costs of cesareans, which include higher financial costs associated with Medicaid, less breastfeeding, much higher respiratory morbidity for infants and frequent injuries to mother’s internal organs resulting from cesarean surgery. For a full explanation of how high cesarean rates impact public health, see my paper posted in three parts starting here.
Amniotomy/ Stripping membranes– From the U.S. National Library of Medicine’s database here is the summary of research on amniotomy: “Evidence does not support routinely breaking the waters for women in normally progressing spontaneous labour or where labours have become prolonged.” There is really no hard evidence that it actually speeds up labor or strengthens contractions. But it can increase the risk of infection for the mother and baby.
Pain medication- Well, this is one of those touchy subjects. But technically most of us don’t need pain medication for labor. Believe me, when you’re having a painful labor it’s not fun. (You should have heard me a few weeks ago during my last labor. “It huuuuurrrrts!”) But having pain medication for a normal labor (spontaneous and without serious complications) won’t make the labor any safer. There are many mothers who report positive experiences with pain medication during labor. However, like any medication, parents need to be aware of the both the benefits and risks as well as the alternatives- and pain medications do have risks. According to the American Congress of Obstetricians and Gynecologists, pain medications in labor can cause side effects like nausea, feeling drowsy, or having trouble concentrating. They can affect the baby’s heart rate temporarily. It can be more difficult to detect fetal heart rate problems when these drugs are used. High doses of these drugs can cause the mother to have breathing problems and can also slow down the baby’s respiratory system, especially right after delivery. Other complications can include: Decrease in blood pressure which can slow the baby’s heartbeat, fever, headache, and soreness. Serious complications with epidurals are very rare but can include: anesthetic medication being injected into one of the veins in the epidural space causing dizziness, rapid heartbeat, a funny taste, or numbness around the mouth. There are a number of different approaches for managing pain in labor that don’t involve medication including water birth with a qualified attendant, hypnobirthing and changing positions.
Episiotomy- Once upon a time, doctors thought that performing an episiotomy (a surgical cut made to the perineum) would prevent extensive vaginal tearing and heal faster than a tear. Turns out neither of those is true. The Mayo Clinic says that there are certain circumstances when an episiotomy might be recommended such as when extensive vaginal tearing appears likely, the baby is in an abnormal position, the baby is large (fetal macrosomia), or the baby needs to be delivered quickly. However, getting out of the lithotomy position can be very helpful in preventing or minimizing tearing in many of these circumstances.
Continuous Electronic Fetal Monitoring- Maybe you’ve heard that continuous electric fetal monitoring prevents babies from dying or being brain damaged during birth- but that’s only been shown to be the case for high risk pregnancies with conditions like preeclampsia, type 1 diabetes, preterm birth and suspected intrauterine growth restriction
If you’re low-risk, continuous EFM doesn’t have any proven benefits and has a significant increase in the risk of cesarean and instrumental deliveries and maternal infection. In fact, the American Congress of Obstetricians and Gynecologists has stated that for low-risk pregnancies there are no proven benefits of EFM over intermittent ausculation. (Intermittent ausculation is the form of fetal monitoring used by midwives who attend home births. It involves using a Doppler fetal heart monitor to check the heart rate every few contractions. It allows midwives to easily check heart rate when the mother is in different positions and even underwater in a water labor/birth.) So why do doctors and nurses persist in using continuous EFM as a one-size fits all solution? Well… it is easier on the nurses, especially when there is central fetal monitoring where the readings from several EFM machines can be observed from the nurses’ station. Intermittent ausculation requires more individualized attention. Doctors are frequently worried about liability and the possibility of being sued for not using it, even though there isn’t any evidence backing up this belief either.
Forceps- Well, by now you should probably be seeing a pattern: certain practices like the lithotomy position or continuous EFM for low-risk women lead to more instrumental deliveries. So if you’re low-risk and stay off your back and have intermittent ausculation during labor, you’re much less likely to end up with a forceps delivery. Which is a good thing since forceps delivery carries an increased risk of uterine rupture, injury to the mother’s bowel and bladder and injury to the perineum. The baby is at an increased risk for temporary facial paralysis, skull fracture, seizures and hemorrhage in the skull. All that being said, forceps may pose less of a risk of seizures for babies than delivery with vacuum extractor or c-section.
It causes 23,000 deaths every year in the United States- that’s more than AIDS (6,955), childhood cancer (1,960), food borne illness (3,000), childbirth complications (650), ebola (2), and Zika (1). Heck, it causes 50 times more deaths than measles in the pre-vaccine era (450). It can cause death quickly even in young, healthy people. It’s circulating everywhere. Pharmaceutical companies are doing little to develop new drugs to fight it. There is very little in the way of disease surveillance on a national and international level to track and monitor the spread of this emerging threat. If things continue as they are now, there may be 10 million deaths from this every year starting in 2050.
What is this strange threat? You may be surprised to find out that it’s antibiotic resistant infections.
Medical and public health personnel have been concerned for several years about a “perfect storm” of antibiotic resistance that is brewing: more bacteria are becoming resistant to more antibiotics and fewer new antibiotics are being developed than ever before. You may not have heard nearly as much about antibiotic resistant infections in the news as Ebola and Zika, but the threat is far more real.
The irony is that the more we use antibiotics the less effective they become because of the highly adaptable nature of bacteria. Many scientists have compared antibiotic effectiveness to resources like oil or timber or fresh water- something that is limited and must be carefully conserved.
However, all hope is not lost. There are still a few things we can each do to help fight antibiotic resistance.
- Don’t take antibiotics for colds and the flu. I heard an ER nurse in one of my classes complain about this- people show up at the emergency room with the flu and demand an antibiotic. Doctors say it happens frequently in their offices too, and they don’t want to lose patients or have a confrontation, so they write a prescription just to be done with the whole situation. According to a 2012 study by the Pew Trust, 12% of Americans believe that antibiotics are very effective at treating viral illnesses like colds and flu and 36% believed that antibiotics are somewhat effective at treating viral illnesses. Dead wrong on both counts. Antibiotics are only for treating bacterial infections- and even those are becoming hit and miss as more bacteria strains become resistant to the antibiotics in current use. When you take an antibiotic unnecessarily, it gives the bacteria a chance to adapt to the antibiotic. The adapted bacteria then multiply rapidly and spread through healthcare facilities and in the community. If someone develops an infection from the resistant bacteria, they can become very sick and even die, especially if they are immunocompromised.
- Sharing is caring…except with antibiotics. Don’t share any leftover antibiotics. Giving a little leftover antibiotics to a friend or family member who is feeling sick gives any bacteria that person is carrying the chance to be exposed to and adapt resistance to the shared antibiotic.
- Finish the complete course of antibiotics- even if you are feeling better. Taking the full course of antibiotics increases the chances of killing the bacteria so they don’t survive and develop resistance to the antibiotic you are taking.
- Try some essential oils as a first line of defense.
If you’re into essential oils and use them to try to boost your immune system during the fall and winter, you may actually be on the right track. A 2004 study by Edwards-Jones, Buck, Shawcross, et. al. found that a combination of grapefruit seed extract and geranium essential oils on burn dressing showed a high level of antibacterial activity against Epidemic methicillin-resistant S. aureus (EMRSA 15). Kavanaugh and Ribbeck (2012) found that essential oils of cassia, Peru balsam, red thyme were found to be effective against a strain of Pseudomonas aeruginosa that is resistant to both oxicillin and methicillin. Used properly, some essential oils may be a good choice for disinfecting surfaces in your house because they could potentially kill off some of those nasty “superbugs”.
- Buy antibiotic free meat and dairy when possible. Guess where 80% of the antibiotics in America are used? Are you sitting down? Livestock and agriculture. Along with treating infections in frequently sick animals, antibiotics are also used to promote the growth of food animals. Use of antibiotics in livestock is actually the biggest problem with antibiotic resistance. Despite the public health threat, regulation of antibiotic use for livestock within the United States is pretty much non-existent. The CDC is working on education programs, but at least right now, there is no legislation about how to use antibiotics for livestock. We can still vote with our money though and choose meat and dairy that are antibiotic free as much as possible.
But take heart. Statistically speaking, antibiotic resistance isn’t the most deadly thing you’ll encounter in your day. Receiving care at a hospital could put you at risk for the third leading cause of disease in the United States- medical errors. But even before that there’s cancer (no. 2) and heart disease (no. 1).