Monday, March 26, 2012

An Open Letter to the Kansas Legislature Regarding H.B. 2598

Note: This bill, or a very similar one, is now SB142. My follow-up comment is here.

Dear Kansas,
I am a Kansas resident and a married mother of two. I have a college education, but for now I choose to stay home with my children. I pay my taxes, I vote, I contribute to society in whatever ways I can, and I strive towards leaving my country a better place than it was when I was born into it.

            I am appalled by your support for H.B. 2598. Among other things, this bill absolves doctors of lying to women and families if there is something wrong with the pregnancy or the baby. It reveals a glaring lack of knowledge about both medicine and the human condition. You are attempting to strip all trust from the medical field and leave us with no one to turn to when something goes horribly wrong with or within our bodies.

Approximately forty percent of conceptions end in miscarriage. About half occur very early, often before the woman even knows she is pregnant. Up to seventy percent of miscarriages are due to chromosomal errors such as triploidy and trisomies. With the exception of Trisomy 21, these chromosomal errors are invariably fatal, and death can occur anywhere between conception and several years after birth, if the child survives pregnancy and is subjected to extensive medical intervention. The rare child who survives longer, or even into adulthood, is profoundly disabled. The older survivors often have mosaic trisomy, meaning they only carry the chromosomal error in some of their cells, so they are not as severely affected as the children who were stillborn or died soon after birth.

I am not going to debate quality of life for the rare survivors, but instead the quality of life for those who do not survive longterm. What many people don’t understand is the poster children for birth defects and chromosomal anomalies, spina bifida and Trisomy 21, or Down Syndrome, are the best case scenarios. These two disorders should not be used as a baseline for debating pregnancy termination. You may not understand the devastation of severe and fatal disorders if you have never watched a family go through the agony of losing a child either before or after birth to such heartbreaking disorders.

There are far worse disorders than Down Syndrome. In addition to trisomies and triploidy, all of the following disorders are 100% fatal. While uncommon, they are not as rare as you would hope. They are very real, very frightening, and so emotionally wrenching that most people are hesitant to discuss the possibility of them.
  • Anencephaly (lack of brain development)
  • Potter’s Syndrome (no kidneys to create amniotic fluid, so the lungs don’t form properly and the baby suffocates within hours of birth)
  • Acrania (the skull doesn’t develop so the brain is eaten away by amniotic fluid)
  • Limb-Wall Body Complex (very severe limb and trunk defects)
  • Lethal Skeletal Dysplasia (the rib cage is too small for the chest cavity, baby suffocates)
  • Osteogenesis Imperfecta, Type II (extreme brittle bones, bones broken in utero, underdeveloped lungs, most die within a year due to brain hemorrhage or respiratory failure)
  • Alobar Holoprosencephaly (failure of the brain to form properly, cyclopia, seizures, baby is stillborn or dies soon after birth)
These are just a few of the thousands of ways human development can go awry. There are thousands of other defects and disorders that vary in severity, but are often fatal and can be diagnosed as such in utero. Some are treatable through medications, therapies and surgeries, some are not and require palliative care.

By allowing doctors to steal knowledge from their patients, you are contributing to the suffering of thousands of families. You are trivializing suffering and not allowing families to prepare for not bringing home a healthy baby. This is unspeakably cruel. Not everyone given a poor or fatal prognosis will terminate. Some families choose to terminate in order to alleviate their baby’s suffering (and many disorders cause intense pain and suffering both pre- and post-natally). Others choose to carry to term in the hope of meeting their baby alive and spending a little bit of time with their baby before he or she passes. It is an absolutely heartbreaking journey either way. The choice needs to be left up to the families, guided by a knowledgeable and honest doctor. It is a difficult decision no matter what, but with the proper knowledge and support, either termination or carrying to term can bring a sense of peace. This peace is replaced by catastrophic surprise and emotional agony when the choice is taken away from the families and put into the hands of politicians.

Modern medicine has given us the technology to allow families to prepare themselves for the death of their much-loved babies in the event something is fatally wrong. It is unethical to withhold such information from patients and pretend nothing is wrong. This shatters the already fragile trust many patients share with their doctors. The goal of a physician is to alleviate pain and suffering, not cause more. It is in violation of the Hippocratic oath to increase suffering, but that is just what H.B. 2598 will accomplish.

H.B. 2598 also seeks to ban the instruction of the dilation and curettage procedure to doctors in training. This measure further devalues the lives of the women of Kansas. While the D&C procedure is used for early abortions, it also has many other medical uses, some of them lifesaving. It is used to remove retained placental tissue following birth, control hemorrhages, diagnose abnormal bleeding, remove tissue from a miscarriage, and diagnose abnormal gynecological bleeding and cancers, and alleviate endometriosis. To ban the instruction of this procedure will kill women.

Perhaps this is more about control than about abortion. The latest political maneuvers in other states include birth control measures designed to limit access to the women who need it most, and to allow employers to delve into employees’ private medical information to determine insurance coverage based on subjective medical need. I hope it does not come to this in Kansas. I don’t want my daughter to grow up in a state where her only value is her uterus, but that is what these measures lead to. Women are not chattel. We are responsible, hard working, intelligent human beings who deserve to possess the rights to our own bodies.

Using birth control is not for loose women and teenagers. It is taking responsibility for your actions and accepting your limitations. No one is forcing anyone else to use it, so it is a personal choice and must remain as such. Most married couples use some form of birth control when not trying to conceive because they know their financial, physical, and emotional limits. It is no one else’s business if a couple chooses to have many children or have no children, or chooses to terminate an early pregnancy or a later one with a fatal diagnosis. There is no one-size-fits all for contraception. Some people are allergic to latex, some have horrendous side effects from hormonal birth control, and some women have irregular ovulation patterns and cannot do natural family planning. We do what we can to protect ourselves, but sometimes the unexpected happens no matter what we do. We must be willing to take responsibility for all of our choices, no matter what those choices may be. Ultimately, the decision lies with the individual or couple, and no single religion or political party should be allowed to dictate how non-adherents react to delicate and painful situations.

I’ve heard claims about making exceptions for certain things, such as medical conditions or rape. Well, pregnancy is a medical condition in itself and it can cause serious complications in a percentage of women. Currently, one third of pregnant women end up delivering by Cesarean section, a major abdominal surgery with potential complications, and that is indicative of how serious pregnancy can be. No woman should be obligated to go through a symptomatic nightmare of a pregnancy unless she chooses to, especially if the conception was traumatic. There are members of the Kansas government who believe rape should not be an exception when it comes to abortion, and this shows how little they know of the devastating emotional effects of both rapes and pregnancies, especially complicated pregnancies.

I have never been raped, and it is disgusting to expect me to plan for being raped. I am neither a flat tire nor a farm animal. I have, however, had two traumatic, health-altering pregnancies. I had hyperemesis gravidarum with my first. It was “mild” as far as hyperemesis goes, but I was still vomiting every thirty minutes every day for four straight months. I lost ten percent of my body weight during the first trimester and narrowly escaped needing a PICC line for fluids and nutrition. I fractured five teeth because the acid ate my enamel, and I still have significant damage to my esophagus.

I was lucky enough to escape hyperemesis during my second pregnancy, but I had such severe reflux that I couldn’t lay flat from five weeks gestation on without the contents of my stomach coming up my throat. I passed three kidney stones starting at twenty weeks, a common side effect of pregnancy. I lost use of my hands during the last eight weeks and had severe pain from my neck to my fingertips because my arms swelled so badly that my nerves were compressed. I had difficulty caring for my older child, could barely hold utensils to feed myself, and was kept awake all night by the intense, unrelenting, untreatable pain in my arms.

My point is, I knew what I was getting into and chose to do it a second time. Not everyone can physically or emotionally handle a nightmare pregnancy, and mine were not as complicated or as painful as many, as I was still able to have normal labors and deliveries. Until you have a complicated pregnancy, or watch someone go through one, your opinions on the effect of pregnancy on a woman’s body carry little validity. No one should be forced go through pregnancy more than once or even at all if she does not want to or does not believe her body can handle it. If she chooses not to conceive or carry a pregnancy, she should be able to safely take whatever precautions are necessary and appropriate. It is a private matter between her, her partner, and her doctor, and not any business of the government.

A woman should be able to delay pregnancy if she chooses until she thinks her body can handle it, until she is financially stable, or for any other reason. She and her partner should not have to make a choice between inevitable pregnancy and sterility or abstinence. Many cultures and religions view sex as a natural bonding act between husband and wife instead of an action to be undertaken strictly for procreation. Currently, the conservative Christian culture is attempting to force their own views of sex upon the rest of the population. Babies or abstinence, no other options. It does not matter that Christians are the majority population in the United States of America. The majority has no right to control the actions, beliefs, or sex practices of the minority. We are not a theocracy, nor should we ever strive to become one.
Women are not breeder sows. We should not be expected to carry and birth child after child because some people believe birth control and abortions are for convenience. There may be a small population of women willing to be oppressed in such a way, but most of us want to make positive contributions to the world beyond giving birth and raising children. We cannot do that if our rights to our own bodies are stripped from us. There are so many people in this world who are unfit parents but continue to have children anyway because either they can't afford birth control due to lack of insurance coverage, or their culture or religion has convinced them that it is wrong to use it. The result: unwanted, unplanned, neglected children, and over-stressed parents who may become abusive or apathetic. This is the source of cultural decline.
It is amazing to grow a tiny new life within your body, give birth to it, and watch it grow and thrive. However, the joys of parenthood do not come without incredible physical and emotional pain and a complete overturning of your life. Not everyone wants to go through that, and they should have the option to abstain from children without being forced to abstain from sex. In an ideal world, couples would only conceive when they wanted to, but since we don't live in that world, we have to resort to medication and medical intervention. We accept the side effects and the stigmas those of differing opinions believe it is their right to bestow upon us.

Kansas politicians, you are not doctors, and many of you are not women. You should not be making medical decisions on behalf of an entire population. Please reconsider your support of bills such as H.B. 2598. This bill would negatively affect both the current generation of Kansan women and the lives of our daughters and granddaughters. Your daughters and granddaughters, included. Do not allow our daughters to go through unnecessary heartbreak or even lose their lives because of decisions made under a sparkling, waving banner screaming “Life”. We are your mothers and daughters, sisters and cousins and friends, and we are worth more than our uteri.

Courtney Privett
Olathe, Kansas

1 comment:

  1. This was personalized and sent to 26 Kansas state representatives, the president of the state senate, and the governor's office on March 26th. I will be meeting with my district's rep on Saturday.