ReproJustice Roadtrip: A Couple Facing Late Abortion Finds Red-state Obstacles in a Blue State

Khadine Bennett and Allie Carter

Amy S. tells the story of how a wanted pregnancy turned into a parent's nightmare, and the many obstacles to compassionate care she and her family faced in Illinois.

Rewire is partnering with the American Civil Liberties Union to publish stories from a reproductive justice roadtrip through Illinois.

One of the reasons  we decided to embark on this road trip for reproductive health and access was that we wanted to provide individuals in Illinois with the opportunity to share, in their own words, examples of barriers they face when attempting to access reproductive health care and information. Today’s post will feature Amy S, a lifelong Illinois resident who currently lives in the Chicago suburbs. Amy’s experience when faced with the difficult decision to terminate a wanted pregnancy echoes that of two other women (one from central Illinois and the other from northwestern Illinois) who have reached out to us while on the road. We would like to thank Amy for her willingness to share her experience with all of you.

Amy S. – In Her Own Words:

In 2006, I was expecting my second child.  My husband and I are college sweethearts and will be married 14 years this year.  Our son Aidan was four at the time.  My pregnancy was uneventful.  I did all the screening tests and everything had come back great.  I went in for an ultrasound at 20 weeks gestation and the doctors told me to come back in four weeks, because they couldn’t see everything they wanted to see, but what they did see looked good.

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When I went back in four weeks, the baby had turned and they had a clearer view.  They discovered that my son had a catastrophic brain malformation, holoprosencephaly.  Moreover it was the worst type, alobar.  My child would surely die.  When the doctor delivered the news, it did not register.  I did not get it until he told me “many would terminate the pregnancy for this.”  Worse, my pregnancy dated 23 weeks and six days.  In terms of practitioners in Illinois, I had essentially no time to make up my mind.  Yet, I had to be sure.  I needed to know, irrational as it sounds, that the ultrasound machine was not broken.

I had an amniocentesis on the spot, went to see an MD who is a genetic counselor, and was able to get in for a prenatal MRI on my baby’s brain at Evanston Hospital.  My genetic counselor was at Lutheran General, and I live in Kane County, so I was all over the place.  The MRI confirmed the diagnosis.  The genetics counselor confirmed the prognosis.  If the baby was carried to term, he would essentially be a vegetable.  He would never sit, eat, or recognize his parents.  He would have seizures, not be able to regulate his temperature or blood sugar, and likely be in great, great pain.  And I thought, no way.  Not my child.  I would not let him suffer and die because I couldn’t muster the courage to do what I had to do for him to pass away in a more humane way.

What I had to do shocked and astounded me.  In a “blue” state, I never imagined that I would be told my OBs could not induce labor at my local hospital.  So the perinatologist, the geneticist and my OB all tried to pull in favors and call contacts to help me.  UIC, Rush, U of C, Evanston, Northwestern, Lutheran General, and my local hospital, Delnor, all said no.  I was too far along at 25 weeks.  At least at Lutheran General, it got before the ethics committee, but they said no because I was not “their” patient.  Where did that leave me?  Dr. Tiller’s clinic in Wichita, Kansas.  Dr. Tiller who was killed last year.

The fee had to be paid in cash, up front.  All told, including travel, it cost us $6000.  Blue Cross denied my claim as out of network.  I appealed and they denied it again.  It was a weeklong process.  I lied to my four-year-old that Christmas Eve was actually Christmas so we could have presents; we had to fly out Christmas Day.

I did not have Dr. Tiller but one of his colleagues.   The doctor was amazing, flying out from their home city one week a month to help out.  We crossed picket lines to go to the clinic each day.  My son began to have seizures in utero, I could tell by the wild and rhythmic movements.  I was scared silly; I did not want to deliver in a clinic.  It was my only choice.  We took pictures of my son and had him baptized.  He was tiny but looked like my other son.

The day after delivery, I was on my way back to Chicago.  I felt sure I was going to die on the plane.  I came home and tried to soldier on.  But, it was too much.  I began having panic attacks and was terrified that something would happen to my four-year-old.  I had what in the old days they would have called a “nervous breakdown” with no psychiatric history.  I was diagnosed with postpartum anxiety, panic disorder, PTSD from what I had to go through to end the pregnancy, OCD and depression.

Long story short, I worked hard to get past that.  I miss my baby terribly to this day.  I got better and went on to have a daughter last year.  My kids are six years apart.  People remark that it’s a big age difference.  I usually don’t tell them that the gaping hole did have another baby there.

My older son has owned this experience all along.  He never lets us forget about Owen.  For a long time he included him in drawings of the family.  He reminds people that he has a baby brother too, he’s just in heaven, and he’ll get to meet him one day.

We have most of Owen’s ashes but spread some at my father-in-law’s grave.  I like to think that they are together.

The entire experience moved me to go back to school for nursing.  I am now halfway through and hope to have my RN by this time next year.  I’m not sure if I want to help moms through labor and delivery, knowing the outcome is not always good and being able to comfort those moms, or through psych, working with people dealing with grief and loss as I have.  But I will not let this experience go without turning it into good, helping people.  I work in a psych hospital now, and I dedicate every day to my son, and hope he’s proud of me.

News Politics

Clinton Campaign Announces Tim Kaine as Pick for Vice President

Ally Boguhn

The prospect of Kaine’s selection has been criticized by some progressives due to his stances on issues including abortion as well as bank and trade regulation.

The Clinton campaign announced Friday that Sen. Tim Kaine (R-VA) has been selected to join Hillary Clinton’s ticket as her vice presidential candidate.

“I’m thrilled to announce my running mate, @TimKaine, a man who’s devoted his life to fighting for others,” said Clinton in a tweet.

“.@TimKaine is a relentless optimist who believes no problem is unsolvable if you put in the work to solve it,” she added.

The prospect of Kaine’s selection has been criticized by some progressives due to his stances on issues including abortion as well as bank and trade regulation.

Kaine signed two letters this week calling for the regulations on banks to be eased, according to a Wednesday report published by the Huffington Post, thereby ”setting himself up as a figure willing to do battle with the progressive wing of the party.”

Charles Chamberlain, executive director of the progressive political action committee Democracy for America, told the New York Times that Kaine’s selection “could be disastrous for our efforts to defeat Donald Trump in the fall” given the senator’s apparent support of the Trans-Pacific Partnership (TPP). Just before Clinton’s campaign made the official announcement that Kaine had been selected, the senator praised the TPP during an interview with the Intercept, though he signaled he had ultimately not decided how he would vote on the matter.

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Kaine’s record on reproductive rights has also generated controversy as news began to circulate that he was being considered to join Clinton’s ticket. Though Kaine recently argued in favor of providing Planned Parenthood with access to funding to fight the Zika virus and signed on as a co-sponsor of the Women’s Health Protection Act—which would prohibit states and the federal government from enacting restrictions on abortion that aren’t applied to comparable medical services—he has also been vocal about his personal opposition to abortion.

In a June interview on NBC’s Meet the Press, Kaine told host Chuck Todd he was “personally” opposed to abortion. He went on, however, to affirm that he still believed “not just as a matter of politics, but even as a matter of morality, that matters about reproduction and intimacy and relationships and contraception are in the personal realm. They’re moral decisions for individuals to make for themselves. And the last thing we need is government intruding into those personal decisions.”

As Rewire has previously reported, though Kaine may have a 100 percent rating for his time in the Senate from Planned Parenthood Action Fund, the campaign website for his 2005 run for governor of Virginia promised he would “work in good faith to reduce abortions” by enforcing Virginia’s “restrictions on abortion and passing an enforceable ban on partial birth abortion that protects the life and health of the mother.”

As governor, Kaine did support some existing restrictions on abortion, including Virginia’s parental consent law and a so-called informed consent law. He also signed a 2009 measure that created “Choose Life” license plates in the state, and gave a percentage of the proceeds to a crisis pregnancy network.

Regardless of Clinton’s vice president pick, the “center of gravity in the Democratic Party has shifted in a bold, populist, progressive direction,” said Stephanie Taylor, co-founder of the Progressive Change Campaign Committee, in an emailed statement. “It’s now more important than ever that Hillary Clinton run an aggressive campaign on core economic ideas like expanding Social Security, debt-free college, Wall Street reform, and yes, stopping the TPP. It’s the best way to unite the Democratic Party, and stop Republicans from winning over swing voters on bread-and-butter issues.”

Roundups Sexual Health

This Week in Sex: The Sexually Transmitted Infections Edition

Martha Kempner

A new Zika case suggests the virus can be transmitted from an infected woman to a male partner. And, in other news, HPV-related cancers are on the rise, and an experimental chlamydia vaccine shows signs of promise.

This Week in Sex is a weekly summary of news and research related to sexual behavior, sexuality education, contraception, STIs, and more.

Zika May Have Been Sexually Transmitted From a Woman to Her Male Partner

A new case suggests that males may be infected with the Zika virus through unprotected sex with female partners. Researchers have known for a while that men can infect their partners through penetrative sexual intercourse, but this is the first suspected case of sexual transmission from a woman.

The case involves a New York City woman who is in her early 20s and traveled to a country with high rates of the mosquito-borne virus (her name and the specific country where she traveled have not been released). The woman, who experienced stomach cramps and a headache while waiting for her flight back to New York, reported one act of sexual intercourse without a condom the day she returned from her trip. The following day, her symptoms became worse and included fever, fatigue, a rash, and tingling in her hands and feet. Two days later, she visited her primary-care provider and tests confirmed she had the Zika virus.

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A few days after that (seven days after intercourse), her male partner, also in his 20s, began feeling similar symptoms. He had a rash, a fever, and also conjunctivitis (pink eye). He, too, was diagnosed with Zika. After meeting with him, public health officials in the New York City confirmed that he had not traveled out of the country nor had he been recently bit by a mosquito. This leaves sexual transmission from his partner as the most likely cause of his infection, though further tests are being done.

The Centers for Disease Control and Prevention (CDC)’s recommendations for preventing Zika have been based on the assumption that virus was spread from a male to a receptive partner. Therefore the recommendations had been that pregnant women whose male partners had traveled or lived in a place where Zika virus is spreading use condoms or abstain from sex during the pregnancy. For those couples for whom pregnancy is not an issue, the CDC recommended that men who had traveled to countries with Zika outbreaks and had symptoms of the virus, use condoms or abstain from sex for six months after their trip. It also suggested that men who traveled but don’t have symptoms use condoms for at least eight weeks.

Based on this case—the first to suggest female-to-male transmission—the CDC may extend these recommendations to couples in which a female traveled to a country with an outbreak.

More Signs of Gonorrhea’s Growing Antibiotic Resistance

Last week, the CDC released new data on gonorrhea and warned once again that the bacteria that causes this common sexually transmitted infection (STI) is becoming resistant to the antibiotics used to treat it.

There are about 350,000 cases of gonorrhea reported each year, but it is estimated that 800,000 cases really occur with many going undiagnosed and untreated. Once easily treatable with antibiotics, the bacteria Neisseria gonorrhoeae has steadily gained resistance to whole classes of antibiotics over the decades. By the 1980s, penicillin no longer worked to treat it, and in 2007 the CDC stopped recommending the use of fluoroquinolones. Now, cephalosporins are the only class of drugs that work. The recommended treatment involves a combination of ceftriaxone (an injectable cephalosporin) and azithromycin (an oral antibiotic).

Unfortunately, the data released last week—which comes from analysis of more than 5,000 samples of gonorrhea (called isolates) collected from STI clinics across the country—shows that the bacteria is developing resistance to these drugs as well. In fact, the percentage of gonorrhea isolates with decreased susceptibility to azithromycin increased more than 300 percent between 2013 and 2014 (from 0.6 percent to 2.5 percent).

Though no cases of treatment failure has been reported in the United States, this is a troubling sign of what may be coming. Dr. Gail Bolan, director of CDC’s Division of STD Prevention, said in a press release: “It is unclear how long the combination therapy of azithromycin and ceftriaxone will be effective if the increases in resistance persists. We need to push forward on multiple fronts to ensure we can continue offering successful treatment to those who need it.”

HPV-Related Cancers Up Despite Vaccine 

The CDC also released new data this month showing an increase in HPV-associated cancers between 2008 and 2012 compared with the previous five-year period. HPV or human papillomavirus is an extremely common sexually transmitted infection. In fact, HPV is so common that the CDC believes most sexually active adults will get it at some point in their lives. Many cases of HPV clear spontaneously with no medical intervention, but certain types of the virus cause cancer of the cervix, vulva, penis, anus, mouth, and neck.

The CDC’s new data suggests that an average of 38,793 HPV-associated cancers were diagnosed each year between 2008 and 2012. This is a 17 percent increase from about 33,000 each year between 2004 and 2008. This is a particularly unfortunate trend given that the newest available vaccine—Gardasil 9—can prevent the types of HPV most often linked to cancer. In fact, researchers estimated that the majority of cancers found in the recent data (about 28,000 each year) were caused by types of the virus that could be prevented by the vaccine.

Unfortunately, as Rewire has reported, the vaccine is often mired in controversy and far fewer young people have received it than get most other recommended vaccines. In 2014, only 40 percent of girls and 22 percent of boys ages 13 to 17 had received all three recommended doses of the vaccine. In comparison, nearly 80 percent of young people in this age group had received the vaccine that protects against meningitis.

In response to the newest data, Dr. Electra Paskett, co-director of the Cancer Control Research Program at the Ohio State University Comprehensive Cancer Center, told HealthDay:

In order to increase HPV vaccination rates, we must change the perception of the HPV vaccine from something that prevents a sexually transmitted disease to a vaccine that prevents cancer. Every parent should ask the question: If there was a vaccine I could give my child that would prevent them from developing six different cancers, would I give it to them? The answer would be a resounding yes—and we would have a dramatic decrease in HPV-related cancers across the globe.

Making Inroads Toward a Chlamydia Vaccine

An article published in the journal Vaccine shows that researchers have made progress with a new vaccine to prevent chlamydia. According to lead researcher David Bulir of the M. G. DeGroote Institute for Infectious Disease Research at Canada’s McMaster University, efforts to create a vaccine have been underway for decades, but this is the first formulation to show success.

In 2014, there were 1.4 million reported cases of chlamydia in the United States. While this bacterial infection can be easily treated with antibiotics, it often goes undiagnosed because many people show no symptoms. Untreated chlamydia can lead to pelvic inflammatory disease, which can leave scar tissue in the fallopian tubes or uterus and ultimately result in infertility.

The experimental vaccine was created by Canadian researchers who used pieces of the bacteria that causes chlamydia to form an antigen they called BD584. The hope was that the antigen could prompt the body’s immune system to fight the chlamydia bacteria if exposed to it.

Researchers gave BD584 to mice using a nasal spray, and then exposed them to chlamydia. The results were very promising. The mice who received the spray cleared the infection faster than the mice who did not. Moreover, the mice given the nasal spray were less likely to show symptoms of infection, such as bacterial shedding from the vagina or fluid blockages of the fallopian tubes.

There are many steps to go before this vaccine could become available. The researchers need to test it on other strains of the bacteria and in other animals before testing it in humans. And, of course, experience with the HPV vaccine shows that there’s work to be done to make sure people get vaccines that prevent STIs even after they’re invented. Nonetheless, a vaccine to prevent chlamydia would be a great victory in our ongoing fight against STIs and their health consequences, and we here at This Week in Sex are happy to end on a bit of a positive note.