Here in America, many of the decisions about health care are based on how hospitals can gain a competitive edge in the marketplace, not on benefits to patients. Read my post here for more details on how this works. Prenatal surgery for spina bifida myelomeningocele is a specialized service that hospitals can offer to stand apart from other hospitals that might be competing for patients. And that dynamic means that it’s in the hospital’s interest to perform as many prenatal surgeries as possible– whether the child and mother will benefit or not.
I have seen some centers that do explain that prenatal surgery has risks and that it’s not a guarantee…and then I see others that really push it as the answer to parents’ problems. And then I see news articles that get in on the act talking about the heroism of the whole endeavor.
This may be why I see so many parents, surgical centers (and news articles) who are excited about what amount to very average results for SB, like walking with a walker and not being a vegetable. There some children who are doing better like walking consistently without a device or not having a shunt. But most parents have been told by doctors that their child will be a bed ridden vegetable so their expectations are very low. The equation looks something like this: (Spina bifida-accurate information) + 10 (prenatal surgery)= MIRACLE!!!
I see a need to further explain the issues related to this procedure beyond my previous post on the subject. And so this is one question I tackled in a health ethics class paper…
“Media sensation can also cloud the issues surrounding new treatments. When the results of the randomized trial comparing outcomes for infants receiving prenatal and postnatal surgical repair of lesions associated with spina bifida myelomeningocele were released, news outlets quickly began broadcasting stories of the surgery, primarily focusing on the positive outcomes such as reduced need for ventriculoperitoneal shunts at 12 months of age and an increased ability to walk with crutches at two and a half years of age. For news coverage, the stories of grateful parents who believe their children have a dramatically improved life from a new medical procedure is very appealing.
However, the actual article published by the researchers who conducted the trial was optimistic but contained several cautions. The authors noted that surgery dramatically increased the risk of preterm birth and pregnancy complications and had future reproductive consequences for mothers. They also pointed out that while the in-utero surgery group averaged better outcomes at 12 months and 24 months, that some children who underwent in-utero surgery had no better outcome that children who underwent postnatal surgery. It was also unknown how long the benefits from the in-utero surgery would last or if the surgery would have any benefit for bowel and bladder or sexual function in children with myelomeningocele (Adzick, Thom, Spong, et. al., 2011).
As in-utero surgery has expanded and more hospitals are trying to attract potential patients, the temptation to overemphasize the benefits of the surgery remain. In their announcement of the first in-utero surgery for myelomeningocele in Texas, Children’s Memorial Hermann (2017) stated that the surgery had many risks, but summarized the findings of the 2011 Adzick study by stating “The study found that if a baby undergoes surgery in utero, the serious complications associated with spina bifida could be reversed or lessened with the operation.” While the statement is not entirely inaccurate because the surgery did find a reduced risk for certain outcomes, it is not accurate either since it neglects to point out the limitations of the procedure as well.
Children’s Hospital of Philadelphia (2017) states on their website that the procedure “… is shown to offer significantly better results than traditional repair after birth.” This statement also neglects to mention that some children may receive no benefit from the surgery. Vanderbilt Hospital (2010) has a presentation on their website about Emily Dotegoski, the 19th infant to undergo in-utero repair and the benefits they feel the surgery has had for her. The benefits cited were attending a regular school, getting good grades and going to physical therapy- all of which are normal for a child with spina bifida myelomeningocele whether repair happens before or after birth. Emily can walk unassisted over short distances, but still uses a wheelchair most of the time- also normal for any child with spina bifida myelomenigocele. In the case of Emily Dotegoski, the surgery may have had few benefits over traditional repair, though the outcome is represented as being exceptional and due to the procedure.
While a webpage does not constitute a full disclosure of risks and benefits, the nuances of how the procedure is “sold” to parents is an issue of concern. In utero surgery for repair of myelomeningocele can only be performed between 19 and 25 weeks gestation while diagnosis typically comes at 15-20 weeks gestation. This gives parents a very short window of time to make a decision about in-utero surgery when they are in a very emotionally vulnerable state. For the hospitals that offer in-utero surgery as a distinguishing specialty, it is in their best interest to recruit as many qualifying patients as possible. Complicating the issue further is the fact that no research has yet been able to pinpoint which children will derive benefit from the procedure and which will not, only that the average outcome as measured during 12 months and two and a half years of age is better for children who underwent prenatal versus postnatal surgery.
Prenatal surgery for myelomeningocele falls into a crossroads between beneficence and maleficence because it may benefit some infants but not others and the associated risks of pregnancy complications may harm some mothers and infants but not others. The tolerance for risk and the expectation of benefits may vary from family to family. The important issue is whether parents have an accurate understanding of the risks and benefits when the option is presented to them or if they are consenting to the procedure based on an unrealistically negative perception of postnatal surgery and unrealistically positive perception of the prenatal surgery.
Adzick, N. Scott, Thom, Elizabeth A., Spong, Catherine Y., Brock, John W., Burrows, Pamela K., Johnson, Mark P. , Howell, Lori J., Farrell, Jody A., Dabrowiak, Mary E., Sutton, Leslie N., Gupta, Nalin, Tulipan, Noel B., D’Alton, Mary E., and Farmer, Diana L. (2011). A Randomized Trial of Prenatal versus Postnatal Repair of Myelomeningocele. New England Journal of Medicine; 364:993-1004. DOI: 10.1056/NEJMoa1014379
Children’s Memorial Hermann (2017). Faith: Surgery in the Womb to Repair Spina Bifida. Retrieved from http://childrens.memorialhermann.org/patients-families/faith–surgery-in-the-womb-to-repair-spina-bifida/
Children’s Hospital of Philadelphia (2017). Fetal Surgery for Spina Bifida (Myelomeningocele). Retrieved from http://www.chop.edu/treatments/fetal-surgery-spina-bifida
Children’s Hospital at Vanderbilt (2010). Emily’s Dotegoski, fetal surgery for repair of spina bifida. Retrieved from https://www.childrenshospital.vanderbilt.org/services.php?mid=6296&slideshow_id=88“
“Yes, it can be sad and messy and powerful and
hard and normal and absurd and
everything in between.”- Zen Hospice Project website
I’ve always felt that birth and death were very similar in many ways. If you believe in the concept of a soul or spirit, the idea that birth is a type of death and death is a type of birth applies, since leaving one world means moving into the next.
Have you seen BJ Miller’s TED talk on hospice care? It sounds counter-intuitive, but the model of care that is slowly taking over end-of-life care has LOTS to teach us about beginning of life care. BJ Miller has a lot of very astute observations borne out of his experience of being on palliative care after losing both legs and an arm and sustaining serious burns in an accident. He has also helped hundreds of people die with dignity and love at the Zen Hospice Project in San Francisco. Here are some ways we could take his thoughts on hospice care and translate them to birth care:
A system designed with diseases in mind and not people
Dr. Miller says that health professionals go into the healthcare field with good intentions but become unwitting agents of a system that doesn’t serve the needs of patients. He says this is because we have a system that is centered around treating diseases and not treating people.
We have this exact problem with birth care in America. Childbirth is seen as a dangerous medical condition that is so fraught with peril that constant vigilance is required to keep both mother and baby alive.
Of course this is the height of hubris.
Evolutionary biology would require that for any species to survive, the process of reproduction must allow both the mother and the offspring to survive without intervention most of the time. Our interventions are there to improve on that and allow more mothers and babies to live who might not live otherwise.
People are afraid of suffering
Folks, I’m going to level with you about something:
You can not get a human being out of your body without some kind of discomfort.
There will be some kind of suffering associated with giving birth- any birth. Cesarean, vaginal, natural, medicated and hell yeah you would be suffering if you were to get something like scopolamine. (You just wouldn’t remember it. It was kind of like the GHB of obstetrics.)
I love how Dr. Miller gets into this concept of suffering. He says that there is suffering we can’t do anything about, that is just a part of life and then there is suffering that can be alleviated.
Suffering we can’t alleviate
Dr. Miller says this is the kind of suffering we need to make space for. It gives us a sense of cosmic proportionality. (Remember, he was a burn victim and triple amputee. He knows about suffering.)
Labor is like this. I’m not going all “curse of Eve” here. Labor pushes your body to the maximum and it is an intense experience. The immediacy you will feel to get this little body out of your body is overwhelming. As I said in my bio, I’m just not one of those birthing goddesses. When I give birth I suffer.
But to me, there is beauty in that suffering.
Even the fear and sadness that accompanied my first son’s birth has beauty. What was most beautiful is how much I did love him. Despite all the depression and anxiety, the moments I bonded with him touched my soul and bound him to me even when he was separated from me. The victory I felt when my second son was born would not have been possible without the hardship of my first son’s birth. The sweetness of my daughter’s birth stands out as one of the most incredible moments of my life. I think I was able to feel that attachment and joy better because I went through each stage of suffering. I felt alive as I was giving life.
A pain free birth shouldn’t be the goal. A birth with dignity and respect, whatever way it happens, should be our goal. As Dr. Miller says, “Necessary suffering creates compassion and unites caregiver and care receiver.”
Suffering we can alleviate
Dr. Miller points out that on the systems side, much suffering is created and invented that serves no purpose.
And this is true of birth care in the US. The vast majority of labor interventions in the United States do not improve the safety of the mother or baby. Some are outright more dangerous than a simple natural labor. Some simply need to be used less frequently and more judiciously. (For a whole run down on all of the unnecessary and overused procedures that are still being commonly used in childbirth in America, see this post complete with scholarly citations embedded.) We need to get rid of the things that cause unnecessary suffering in birth.
Palliative care- living well at every stage
Dr. Miller makes a distinction between palliative and hospice care. The two are often used interchangeably but are different. Hospice care is about end-of-life care. But palliative care is about living well at every stage and eliminating suffering as much as possible.
He gives the example of Frank, a patient with prostate cancer and HIV who went rafting on the Colorado River. Dr. Miller’s response to this was, yeah, it was dangerous. But what an adventure! This man knows that his time on earth is limited and he wants to experience an adventure while he still has the chance. Rafting the Colorado River helped alleviate his suffering and allowed him to live better.
Mind-blowing idea: What if approached birth like palliative care? What if the idea behind birth care was to birth well, no matter what your circumstance?
Rose petals at the end
Dr. Miller says that at the Zen Hospice Project where he works, they have a ritual they perform for everyone who dies there. When the person dies, the coroner’s office comes to collect the body. The staff at Zen Hospice have arranged that before the body is taken away, loved ones and staff come and sprinkle rose petals over the body and say anything they want to. They might sing songs or read poems before the body is taken away.
Rose petals on the body don’t serve any medical or physical need.
But it’s beautiful. And dignified. It shows honor for what has taken place.
What if we treated birth like this, with warmth and joy rather than repugnance and contempt?
Hospitals are anesthetic, not aesthetic
Dr. Miller says that hospitals offer an anesthetic experience, not an aesthetic experience. That numbness takes away the pain and the joy. He very rightly points out that hospitals are for acute trauma and treatable illnesses.
Of course, birth is generally neither of these. This is why moving more births into birthing centers makes sense– and even improving care for home births.
First eliminate unnecessary suffering, then comfort the senses
This is Dr. Miller’s framework for end of life care. And it should guide us for maternity care as well. There is nothing about eliminating unnecessary suffering or providing comfort that inherently makes birth unsafe. Even when cesareans or inductions are medically indicated, the parents and baby can be treated with respect and allowed reasonable comfort measures. Skin-to-skin contact for breastfeeding initiation after a cesarean can almost always take place.
Truly, we need to lift our sights to well-being as Dr. Miller says. Health care should be about living better. In the context of maternity care, we need to move past the “live baby standard”. We need to start asking if the birth was about the well-being of the mother and baby, not just whether the baby survived. (And that “at least your baby is alive” standard takes on a dark irony when you find out that the State of the Mothers World Report ranks the United States as having the highest rate of first day mortality of any developed nation.)
Dr. Miller says we need to give rise to art in dying. We need to make space for “a crescendo”.
Let’s do that for giving birth too.
“Rituals could feed conflict by turning opinions into ‘sacred values’.”– Scott Atran, director of anthropological research at Centre National de la Recherche Scientifique
“Definition of myth: a usually traditional story of ostensibly historical events that serves to unfold part of the world view of a people or explain a practice, belief, or natural phenomenon.”– Merriam-Webster Dictionary
Once Upon A Time…
“Do you know what women were dreaming of when they were giving birth in a cabin with the wolverines prowling around? A hospital! This sterile environment where their baby would be safe!!!”
I was listening to one of my favorite podcasts and had encountered a moment in an otherwise great podcast that irked me. Two men- only one of whom had even witnessed a birth in a hospital- expounding on the history of childbirth. ( I love how anyone, man or woman, who may not have ever even seen a birth but believes hospital birth to be 100% safe is suddenly more of an expert on childbirth than any midwife, doula or mother.)
It’s completely understandable that they would think that hospital birth reduced neonatal and maternal mortality. Most people think that’s how the story goes.
But it’s not.
The Actual Data Behind Hospital Birth
Hospitals and even doctor care were actually much higher risk for most births in the 19th and early 20th centuries. For example in her book Inside The Victorian Home, Judith Flanders describes how women who had midwife care had lower rates of death than women who delivered with doctors because doctors spread infections from vaginal dilation checks. Ignaz Semmelweis formed his ideas of the transmission of puerperal fever after noticing that women who gave the birth in the street had lower rates of death than women who gave birth in the obstetrical clinic with doctors in attendance. (These clinics catered to low-income women who wanted the doctor care after their baby was born, but were terrified of the 10% mortality rate of the clinic. These women frequently chose to give birth on their own claiming precipitous labor rather than risk delivery in the clinic.)
Even into the 20th century women who delivered with midwives had a better chance of surviving delivery. Records from England and Wales in the 1930’s showed that the wives of manual laborers who had midwife care had better survival rates than higher income women who had doctor care for pregnancy and birth. And infant mortality? Many hospitals in the early 20th century had higher rates of infant mortality because of the increased use of forceps and other equipment. The White House Conference on Child Health and Protection of 1933 found that during the period between 1915 and 1929 there was a sharp increase in the number of hospital births, along with a 40-50% increase in infant mortality due to birth injury.
Long story short, if you believe that women with uncomplicated pregnancies can deliver safely outside a hospital, you are right. It is a myth that hospitals and doctors lowered the rates of maternal and neonatal mortality. Birth moved into the hospital because scopolamine was touted as a way to spare women the pain of childbirth. But if you really believe that tying a laboring woman to a hospital bed and giving her a hallucinogenic drug that leaves her paranoid is an improvement over a natural birth, I think you need to reevaluate your morals.
Legends And Tall Tales From Public Health
Let’s take on another popular myth: Jonas Salk single handedly saved the world from polio out of sheer altruism. It makes a great epic, something like Beowulf or King Arthur, but there is no data to back that story. The 1955 Vital Statistics report states that the Salk polio vaccine could not be completely responsible for the decline in polio because polio declined for all age groups, though the vaccine was given only to children. The Salk and Sabin (sugar cubes) vaccines were both widely used so the Salk vaccine can not be credited with ending polio.
Salk and his work also had their own sets of flaws. He tested flu vaccines on mental patients who were unable to consent and unable to adequately describe symptoms for research purposes. And a mysterious batch of the Salk vaccine from Cutter Laboratories also caused the death 10 and paralysis of more than 200 children. Salk’s remark that he could no more patent the sun than his vaccine was more a reflection on how he could not patent his vaccine because of prior art. (Others had done similar vaccine research and trials.) In fact, Salk and the National Infantile Paralysis Foundation had looked into patenting Salk’s IPV. Getting personal about Salk, a book that came out a little while ago about him and Sabin portrays Salk as an ambitious scientist who could be difficult to work with. And for that matter, statistics show that before either Salk or Sabin vaccines were released polio rates were in an overall downward trend.
Louis Pasteur a genius? He stole ruthlessly from others and misrepresented his work. (It’s no wonder he didn’t want his notebooks released to the public.) Edward Jenner was known to be very proud of his son Edward Jr. and loved him dearly. However, he also Used his son as a test subject over and over again, repeatedly inoculating him and then exposing him to diseases. Sometimes Edward Jr. recovered and other times he became seriously ill. (Some have speculated that Edward Jenner Jr.’s mental and physical impairments may have been caused by the repeated cycle of illness or contaminated inoculation materials, though it’s hard to say one way or the other.)
Even breastfeeding comes with its own set of myths from both sides- either that it makes your baby smarter or that it really doesn’t have any substantial health benefits. Both are untrue, but different sides of the breastfeeding debate cling to these myths. Ultimately, those myths end up hurting mothers and babies because they alienate women who encounter difficulties and create a “us” vs. “them” dynamic. That’s why I designed my curriculum to be as “myth free” as possible. I want any woman who is interested in breastfeeding to feel welcome to learn more.
The More Things Change, The More They Stay The Same
In so many ways, we are no different than our ancestors. We tell stories about heroes, monsters, rituals and weapons to try to understand our world. And we live in a world that is still full of fear and uncertainty despite our technology and efforts. 99% of births in the US take place in hospitals, 30% of which are c-sections- and the US still has the highest rate of maternal and first day infant mortality of any developed nation. People don’t worry about polio any more, but acute flaccid paralysis is on the rise and emerging diseases like the nonpolio enterovirus EV-D68 are causing more cases of serious disease. We still have little control over our world.
What If We Approached New Health Data Like A Black Hole?
In my opinion, we in the health field need to take some lessons from the astrophysics folk. They are always finding out new information about our universe that makes them re-think current models. When that happens, they say, “COOL! This helps us better understand the universe we live in!” I think it’s hard for public health and medical professionals to take that attitude because everything feels so high stakes. After all, discovering a super massive black hole from the early days after the Big Bang doesn’t impact anyone’s health or life.
Kevlar Vest Or Security Blanket?
The problem with myths is that they are security blankets: they feel comforting but don’t provide any actual protection. Myths becomes an even bigger problem when people start thinking their security blanket is actually a Kevlar vest. This is what happened with puerperal fever. Though Dr. Semmelweis had shown strong evidence that doctors’ lack of hygiene was spreading the disease, the widely accepted myth that puerperal fever spread through the air and was exacerbated by womens’ emotional nature prevented the acceptance of handwashing for almost a century, costing the lives of millions of mothers.
Just because “everyone” says things are a certain way doesn’t mean it’s true. If you find something doesn’t match up, it’s OK to ask questions and look for data to find out if you are dealing with a sound hypothesis or a myth.
If you’re breastfeeding you need fenugreek, right? Who couldn’t use a little more milk supply?
When you’re breastfeeding, fenugreek might seem like the go-to remedy when things aren’t going well. But before you rush out to your local health foods store or look for Amazon’s top pick, STOP.
Fenugreek may not be the answer for you.
Some studies and several moms have reported that fenugreek can increase milk supply.
…sometimes a galactagogue is not the answer.
Will Fenugreek Help?
There are certain times that fenugreek may not help:
- Tongue-tie/ lip-tie
- Stress induced drop in milk supply
- Inverted nipples
So it doesn’t matter how much fenugreek (or lactation cookies or teas) that you take, your baby won’t nurse well if you’re having one of the above problems. The good news is that most of these problems have solutions, but the solutions just won’t involve fenugreek. (Having a problem and you don’t what the cause is or what the heck to do about it? Take one of my breastfeeding classes and you’ll get some answers and solutions. I designed my curriculum with you in mind.)
It’s also important to understand that any kind of galactagogue is only a small part of addressing real milk supply issues. Milk supply depends primarily on the stimulation provided by the baby suckling at the breast or from using a breast pump. So if you’re separated from your baby because of an emergency c-section or your baby is in the NICU, taking supplements WILL NOT be enough to build an adequate milk supply– you will have to pump. (Believe me, I spent two weeks pumping around the clock for my oldest and if I could have breastfed him by eating teas and cookies instead of pulling out that pump one more time at some forsaken hour of the late night or early morning, I would have done it. I feel it your pain.)
So even if you really do have low milk supply, you’ll have to do frequent nursing and pumping sessions to build your milk supply. Supplements, teas and cookies can bump it up a little, but they can’t do anything without the stimulation of nursing a baby or pumping.
Fenugreek- What It Can Do
So when do you use fenugreek? And what can you expect?
If you are regularly nursing and/or pumping and you or your baby don’t have any of the other conditions listed above, you can take fenugreek to help bring your milk supply up a little bit more.
Fenugreek isn’t the only galactagogue out there either. My personal favorite was hops tea. (Though hops tastes pretty bitter and you’ll want to add some lavender flowers and/or spearmint leaves to make it test palatable.) Oats and leafy greens are also supposed to be good for milk production. Personally, I think they do help. When I was exclusively pumping I had lots of green smoothies and oats and I always had enough milk. Again, it doesn’t take the place of pumping and nursing, but in my opinion, I think it helps. I also think that leafy greens and whole grains improves the nutritional quality of breastmilk.
Do You Really Need Fenugreek?
Most women can make an adequate supply of milk for their babies without any special supplements. However, perceived insufficient milk supply is actually quite prevalent. (Which is why include it in my curriculum.) A lot of women are turning to fenugreek and other supplements because they think they have a low milk supply- not because they actually do.
If you have breast hypoplasia, some supplements might be helpful in boosting milk supply. No guarantees, because breast hypoplasia can be really difficult. But this is a great story of a mom who had breast hypoplasia (also known as insufficient glandular tissue) and used a combination of several strategies- including some galactagogues- to bring up her milk supply.
Galactagogues like fenugreek do have a place in breastfeeding, but there is no magic pill for milk production. The bulk of your milk production is still determined by nursing your baby and pumping.
Two new videos have been added to the “Let Me Level With You” series!
So many parents have questions about hepatitis B and what the real risks are. Here’s the info on who is really at risk for hep B and why.
Prenatal testing seems simple on the surface. You get a test, it tells you if your baby has a birth defect or not.
Except that it doesn’t actually work that way.
In so many ways, prenatal testing has more in common with a roulette wheel or game of craps than a diagnostic procedure. This video has the most important things you need to know about prenatal testing like false positives, false negatives, perinatal hospice care, and quality life:
I’m not talking about rates of vaccine exemptions here. Oh no. People like talking about vaccine exemption rates because it distracts them from the bigger issues of school vaccinations.
I’m talking about epidemiology.
The idea behind mandatory school vaccinations is to prevent diseases from spreading among children in a crowded setting. But required school vaccinations- especially for certain diseases- don’t necessarily solve the issue of transmission or serious outcomes. For example:
These are diseases that are generally mild in elementary school age children. I’ve written an extremely detailed post about measles, so I won’t regurgitate it here. (You can read it of you want references from the CDC and medical journals about how measles affects people of varying health and ages.) Long story short, measles is actually much more deadly in adults than children. Mumps is rarely deadly, however it can cause an infection of the testicles in teenage boys and men- though sterility is extremely rare. Rubella is generally a mild disease for children and contracting it in childhood confers lifelong immunity. But if a woman in her first trimester of pregnancy catches it, it can cause a condition called congenital rubella syndrome, causing the baby to be born with conditions like blindness, deafness or mental impairments. Chickenpox (varicella) is also much more severe in teens and adults. If a pregnant woman catches chickenpox, it might (in rare instances) cause birth defects. Also of note, in Great Britain, the National Health Service don’t recommend vaccinate for chickenpox on a regular basis because low circulation of the varicella virus can increase shingles in older adults.
I have also written a big post on pertussis/parapertussis as well and the relationship between vaccination and the adaptation of the bacteria. That’s where you can find all the nitty-gritty details and academic references on this subject. We are facing a growing crisis with asymptomatic transmission of pertussis. And even as more and more people are being vaccinated for pertussis, the rates keep climbing. See the CDC’s nice little chart here. Parapertussis is on the rise and pertussis vaccines are ineffective against it. So even if your kid’s whole class gets that ice cream party from 100% vaccine coverage, it won’t stop whooping cough. (But at least the kids got an ice cream party, right?)
This one isn’t technically a school vaccine, though Ohio, New Jersey, Connecticut and Rhode Island require it for day care. The idea is probably to prevent transmission of the influenza virus to babies and toddlers since they (along with the elderly and the immunocompromised) are at the highest risk for complications. But you can’t actually achieve herd immunity with the flu vaccine because it’s only 40%-60% effective and herd immunity requires that 80%- 90% of a population be immune. And unfortunately the flu vaccine is less effective for children under 2 and adults over the age 65. Some studies measure flu vaccine effectiveness by how often people go to the hospital for flu- not necessarily in reduced cases of flu. In these types of studies, the flu vaccine is considered successful if you don’t get hospitalized for the flu after getting a flu shot. You may still get the flu, you may still pass the flu, but we long as you aren’t hospitalized for it, the vaccine can be counted as effective.
Hepatitis B is primarily spread through injection drug use, sexual contact and maternal to child transmission during birth or the first few years of life. Child-to-child transmission is certainly possible, but it doesn’t happen very often. (Just like hepatitis B from health care procedures is possible but doesn’t happen very often.) The age group at highest risk for HBV are adults who are opioid drug users and men who have sex with men. If we talk about Hepatitis B among children, teens are the most at risk with kids ages 15-19 having the highest rate of HBV infection. After that, it’s a pretty close tie between kids ages 10-14 and infants ages 0-4. That’s because 15-19 year olds are most likely to be participating in high risk behaviors with 10-14 year olds following behind. Kids ages 0-4 are mostly the maternal transmission cases where the mother passes the disease to the baby during birth or during the first few years of life. Kids ages 5-9 are the least likely to get hepatitis B because they aren’t sexually active, using drugs and aren’t in as close of contact with their mothers as infants.
However, children who contract hepatitis B are more likely become chronic carriers and develop liver cancer than adults who contract hepatitis B. So the idea behind vaccinating elementary school children for hepatitis B is to reduce the likelihood of child-to-child transmission- though the risk of becoming a chronic carrier seems to be highest among infants and children ages 1-5.
This is an interesting issue for most of the United States though because hepatitis B risk is relatively low in the US. 0.1%-0.5% of the population in the US are infected with the hepatitis B virus, in comparison to places like the Mediterranean where about 5% of the population is infected with hepatitis B virus and in many Eastern European countries, 8% or more of the population is infected.
Now countries that have sky-high rates of hepatitis B have much stronger requirements for hepatitis B vaccination. But in many countries like France, the UK, Denmark and Norway where hepatitis B infection rates are similar to the US, hepatitis B vaccination is focused on those children who are most at risk. Our American vaccine schedule for hepatitis B is more like that of high risk countries like Greece, Slovenia, Slovakia, Hungary and Romania where hepatitis B is much more common. Within the US, our practice of requiring hepatitis B vaccination for elementary school children may not have a big impact on hepatitis B transmission- especially since child-to-child transmission in schools and day care centers since it is quite rare.
*Of course, not all of this applies to West Virginia which is seeing a dramatic increase in hepatitis B due to its high rates of injection drug use, though their rates have not yet approached that of the Mediterranean and Eastern Europe… Yet.
*My son CJ doesn’t have a “technical” diagnosis for dyslexia. When I saw that his younger brother was grasping concepts like sounds and quantities easily and that CJ was still writing his letters and numbers backwards and upside down, I looked up dyslexia. He fit almost every symptom: difficulty matching sounds and letters, unable to sound out words, lots of difficulty with reading, trouble remembering sequences, unable to rhyme words, using context clues to figure out words, reversing and inverting letters in words, etc. I also suspect my brother may have had undiagnosed dyslexia when he was a kid. (We went to public school.) Like most parents, getting a trained specialist for an evaluation is not something we can do very easily. When I found that he fit so many of the symptoms, I just started finding out everything I could about dyslexia to tailor a curriculum to his needs. Onwards…
CJ is seven right now and on a traditional school system schedule, he would be in second grade. We have homeschooled him from the start and last year I started to really focus on more formalized reading and writing based work for him. Before this we had done a lot of learning games and some reading and writing practice. Schooling sessions quickly became a battle. I’d ask him to read simple three letter words and I may as well have asked him to read the Klingon paq’batlh. (This is when I hit my homeschooling crisis moment- “My child is failing because I am a terrible teacher!!! I am a walking example of the education apocalypse that is predicted when parents homeschool their children!!!)
As I began to understand that CJ’s brain just wasn’t wired on a traditional school schedule, I became a little more patient during his lesson time. But I felt like I was fighting a losing battle. This past summer I was giving him first grade level work and he couldn’t do it. He needed a ton of coaching to get through his workbook pages. (Apparently I’m not alone in this experience. One popular homeschooling site for parents with dyslexia had an article called “What To Do When Teaching Reading Takes All Day”.)
One day after cleaning up the school supplies, I saw my four year old’s Pre-K workbook and an idea hit me: Get CJ to do all the pages in the Pre-K workbook.
Unorthodox, yes. But I knew he could do it fairly easily. (The great thing is that he didn’t really know that he was doing Pre-K work. He couldn’t read yet and he doesn’t really understand the concept of grades in schools. So his ego didn’t seem much affected. Which is good because he likes to be in charge.)
30 Minutes A Day to Overcoming Dyslexic Symptoms
We did two 15 minute sessions 6 days a week in the Pre-K book. We started back in August and he was done after a few weeks around the beginning of September. The thing I noticed is that he was becoming more familiar with sequences, lines and writing, quantities and the sounds that letters make. So far, so good.
We moved up to the Kindergarten level book and I am thrilled to say that with the same 30 minutes a day, he raced through the workbook in about 6 weeks! Now he can sound out words, rhyme like a poet, do simple addition and subtraction, finish patterns, spell, and read and write short words. He just started first grade level reading, phonics and math.
The other difference I’ve noticed is that he’s become more confident and takes more initiative. He’s started doing some of his worksheets independently and is getting the answers right. He’s still writing his letters backwards, but he knows the names, sounds and how to use them to spell. A couple of weeks ago, he read Hop on Pop out loud to his dad and brother with minimal help. Score!
Why Is It Working?
I’m not a learning specialist, but my guess is that since dyslexia is a neurobiological disorder that affects the parts of the brain involved in language processing, getting a stronger grounding in phonics, reading and writing has helped him build the pathways in his brain to be a more effective reader and writer.My current hypothesis is that people with dyslexia may need extra strong base in language before moving on to more advanced reading and writing.
I know that people with dyslexia are often auditory learners, but I want CJ to be able to confidently navigate a world that relies heavily on reading and writing. He doesn’t need to be a professor of Russian literature, but I want him to be able to read and write well enough to handle the mountain of bureaucratic paperwork he will inherit at 18 when he has to start taking responsibility for his own medical care. I also don’t want him to be limited in his career options from an inability to read and write well.
Other Things to Note About This Experiment
We’ve also had him using an app called ABC Mouse.com every day. This has introduced him to some second grade level work, though he often needs help with some of the more advanced math and grammar. (However, one of the gifts of being a busy mother of three/ MPH student/ breastfeeding educator/ childbirth educator in training is that I can’t always rush over and help him immediately. There have been so many times he has said that he has a hard math or reading game that he can’t do himself and by the time I’m able to get over to him, he has it figured it out.)
The workbooks we have been using are based on Common Core. You can buy them on Amazon. We’ve used School Zone’s Big Workbooks and supplemental work books as well and Thinking Kids workbooks as well. I don’t if any one work book is better than another, I think it’s the extra reinforcement of those base level skills.
We also feel lucky that we didn’t come into this with the baggage of public school. Public school is like public transportation- it’s necessary to have it as an option, but it’s not an ideal solution for everyone. Most schools are not able to provide the resources necessary to diagnose dyslexia and help kids with it. CJ hadn’t had the experience of being the kid in class who doesn’t understand things, so we were able to avoid some of the frustration associated with that. I think half of the difficulty with dyslexia is trying to fit kids with different brains onto a schedule that doesn’t work for them or their teachers.
Seeing how he struggled to count, finish patterns, sequence events and assess quantities for a while, I suspect that he may also have a learning disability called dyscalculia as well.
And so, our exhilarating adventure in homeschooling with dyslexic symptoms continues!
Utah actually has a higher than average rate of juvenile type 2 diabetes.
This started as an assignment for one of my public health classes, but I’m sharing it here as we head into the sugariest time of the year. Utah’s issues with obesity and diabetes are nowhere near what they are in other places (the Southern states), but it is growing.
The paper is here: https://docs.google.com/document/d/10qh0b476zUFKDv41O0RkvXaGoCA6-xZyAC1dGfn-qnM/edit?usp=sharing
Contrary to what you may have heard, the United States does not have universal health care. The ACA is well-intentioned, but there is no way it can revolutionize the health of Americans: