The INCIID Story: Listeria, Pregnancy and One Couple’s Fight to Build Their Family Against ALL Odds

[Editor’s Note: Please be aware pregnancy and infant death are mentioned in this story.]

After a year of marriage, my husband and I decided that it was time to start a family. We had no reason to suspect that we would endure hardship, tragedy or what turned out to be a national health crisis along the way. Nor did we expect to find a community of self-empowered people who would provide us with the support and information we would need on our five-year journey. 
After months of good-old fashioned trying without success, my internist suggested an evaluation by a local infertility specialist. We were quite skeptical that we were the victims of anything more than a two-lawyer couple trying to mesh work and travel schedules in a way that would result in a baby. Imagine our surprise when the doctor told us that the tests came back with a male factor diagnosis severe enough to require IVF with ICSI, a term we had never heard before. This doctor immediately followed his diagnosis with a pitch for his clinic’s version of a “guaranteed result” meaning we put up a lot of money, some of which would be refunded if we never gave birth, none if we conceived on the first try. We left his office not only stunned by the news but with a sour taste in our mouths for the way in which the monetary aspect of an infertility diagnosis was presented. This was the first of many times we decided to switch our care to another reproductive endocrinologist.

Our second specialist never raised the issue of how much money it would take to have a baby and instead spent hours with us developing a game plan that was as noninvasive as possible while realistic given our diagnosis. Finally, after months of trying and testing, we were off to battle Mother Nature armed with Modern Medicine. We started by doing one unmedicated and two medicated IUIs to no avail. After consulting with our doctor we agreed it was time to try an IVF cycle and divide my eggs into two groups: one that would be immediately mixed with my husband’s sperm and the other that would have ICSI. Twenty-seven eggs and severe Ovarian Hyperstimulation Syndrome (OHSS) later, we learned that the first group produced no embryos, but that the second group was 11 for 11. We were thrilled, excited and nervous all at the same time. Do we do a 3-day or a 5-day transfer? How many embryos do we put back in? Could I carry a multiple pregnancy? As it turned out, all these questions, as so many are in infertility treatment, were out of our hands. Our embryos were of poor quality and our doctor suggested that we transfer back four to my uterus to optimize our chances for a singleton pregnancy. We were nervous because we had already been told that twins would be a stretch on my small frame, never mind a higher order multiple. We counted the days until our beta, but when the OHSS took a turn for the worse, my doctor ordered an early test. At ten days post 3-day transfer, my beta was 40. We were pregnant! One week later we arrived for an ultrasound to see whether there was a healthy, well-positioned gestational sac – there were four.

The next few weeks were filled with fear as we wondered how our pregnancy would progress. We had repeat blood tests and ultrasounds, several episodes of severe bleeding, and nausea so bad that I could no longer work. Finally it was clear that all four embryos were progressing along a normal path for a quadruplet pregnancy, a pregnancy that we already knew my body could not support and would eventually result in the miscarriage of all the embryos if the difficult choice of selective reduction were not made. With heavy hearts, we chose to try to save two of the fetuses and reduced to twins. After the follow-up appointment announcing that my twins were healthy and progressing normally, my husband and I finally allowed ourselves to use the word “babies” when talking about the pregnancy. We were having babies!

The first trimester behind us, we felt the joy of announcing our good fortune to family, friends and co-workers. I bought all the maternity clothes I could get my hands on and wore them proudly. We took pictures of my ballooning belly and tried to figure out first and middle names for girls and boys, not knowing what we were having. Our happiness was so complete that we were totally blindsided when the axe fell. We never saw it coming. I had never heard of it before my doctor, at the foot of my hospital bed, said it. I was sick, in fact septic. It was a foodborne pathogen called listeria that had caused what I first thought was the worst case of the flu I had ever had.

Listeria is commonly found in soft cheeses, unpasteurized milk, juice and cider, and processed meats such as hot dogs, deli meats and paté. It sickens thousands per year resulting in hundreds of deaths. Listeria thrives in blood making pregnant women, especially those carrying twins or more, particularly vulnerable. It is estimated that up to one-third of all listeria deaths per year involve pregnant women and their babies. Listeria is particularly nefarious in that its symptoms mimic the flu: fever, chills, stomach upset and lethargy, easily dismissed by women and doctors. It was only after days of being told by my perinatologist that he didn’t need to see me in the office, but to just rest and take Tylenol that I went to my internist for another opinion about this “flu”. She took one look at me and sent me to the emergency room where I immediately began receiving IV antibiotics. Blood cultures confirmed that I was septic, but it took forty-eight hours to identify the bacteria as listeria.

I was hospitalized for weeks, undergoing a multitude of tests each day to try to track and stop the disease. No one spoke in terms of prognosis, only that I was “as sick as you can be without being dead.” I had an infectious disease specialist trying to find an antibiotic to combat the listeria, a cardiologist tracking its effect on my heart, a neurologist daily examining my neurological functions to determine whether meningitis or a brain abscess had set in, a radiologist who picked and re-picked places on my body for IV, PICC and Mid lines, and a new obstetrician to replace the perinatologist, all coordinated by my indefatigable internist.

At the same time, the hospital where I was receiving treatment was under a legal obligation to report that it was treating a patient who had contracted listeriosis. Samples of my blood were sent to local and federal health authorities for further DNA testing of the listeria itself. These tests were trying to determine two things: first, what product had made me sick and second, was there a match between the DNA of the listeria strain in my blood to the strains found in any other blood samples that either my state’s health department or the Centers for Disease Control and Prevention in Atlanta was storing. In other words, was my sickness a one-time event or was there cause for national concern that a product was on the shelves about to cause a whole lot of people to get sick.

The state health department took the lead in the investigation. They first called within one day of learning from the hospital that it had confirmed the presence of listeria in my blood culture. I was questioned as to my food habits for the previous three months – where I had ate, where I had shopped, and whether I had tasted any samples left out by a store. They also wanted the contents of our refrigerator, a sample of our water and copies of all our grocery receipts. State investigators then went out to all the stores I told them I frequented and “shopped” the items I had eaten, careful not to disturb the packaging before providing them to the state laboratory for testing. One of these items tested positive for the same strain of listeria found in my blood: paté. The state health department immediately informed the CDC in Atlanta which confirmed the match and compared it to other known listeria cases around the country. As soon as a number of other sick individuals recalled eating the same brand of paté, the CDC asked the United States Department of Agriculture to step in. It approached the company with the test results and demanded a nationwide recall of all of the products produced in the kitchen where the paté was made that had made me sick.

Meanwhile, I was still hospitalized fighting the listeria sepsis. The initial antibiotics used to treat me were failing and the doctors were giving up hope that saving both my life and the lives of our unborn twins was possible. They wanted to try one more drug though its teratogenic effects on our babies were unknown. At that point it was our only hope of saving all three of us, so we agreed. Within days my blood was clearing of the listeria, but it was still not enough. I went in and out of premature labor so often that I was being shuttled between the Med/Surg and the L&D floors of the hospital. Finally, my doctors urged me to get a second opinion from the city’s leading Maternal Fetal Medicine Specialist to confirm what they already suspected: our babies were dying and the longer I tried to continue the pregnancy in denial of its inevitable outcome, the higher the likelihood that I would die, too. Those days after our consult with the maternal fetal medicine specialist were the longest and worst of my life as my husband and I struggled to accept what we were being told. Our twin girls were stillborn a few days later and our dreams of having a family were shattered.

Before being discharged to begin the road to recovery at home, a number of doctors stopped by my hospital room to encourage me and my husband to take care of our marriage. At the time we were baffled by the idea that anything could damage our rock solid, happy marriage. But as the weeks and months wore on, the toll of grieving for our girls while trying to recover my physical strength and some semblance of a normal life began to wear away at us. It was easy to feel alone in grief if the other was having a good day. The one having the good day, however, did not want to be brought back down by the depression of the one having the bad day. Finally, shared good days outweighed bad days and our thoughts turned once again to trying to have a baby.

Then, about a year after my illness, I was reading the newspaper when I saw that on President Bush’s first day in office he rescinded an Executive Order by President Clinton that would have required meat processors and producers to routinely test their facilities for listeria. The regulation had been in development for over two years, including a one-year trial. Anger had never risen so quickly in me and I felt compelled to act. The newspaper’s reporter hooked me up with the Center for Science in the Public Interest, the organization spearheading the effort to force President Bush to reinstate the order. Rallies and a letter writing campaign were planned and I quickly volunteered to help. Though it felt as though I had received so much already from my fellow INCIIDers, I asked our community to lend a hand. CSPI provided me with a form letter directed toward various administration officials that could be filled out and forwarded at the click of a button. At the same time Nancy Hemenway placed it on the INCIID website, I forwarded it to my entire e-mail address list and requested that my friends also pass it on. The next day, CSPI told me that the administration had already received over 500 letters from my friends and fellow INCIIDers. Within a few days, the Secretary of Agriculture agreed to review the rule on an expedited basis. I felt both triumphant and tremendously proud to be associated with the women of INCIID, who, despite their own personal struggles, took the time to help me try to prevent our experience from happening to another family.

The victory, however, was short-lived. New federal rules must follow an administrative process before they become an enforceable regulation. At first, we were not too worried because the initial step, the cost/benefit analysis prepared by the OMB, would be done by the same civil servants that had processed and approved it under the Clinton Administration. The next step is to publish the regulation as a “Proposed Rule” in the Federal Register, inviting public comment. If there is no significant opposition to a Proposed Rule, it generally becomes an enforceable federal regulation after a specified amount of time. In our case, the Meat Industry vowed to fight any attempts to place what it considered a burden on its member-producers. As a result, the regulation, which had been days away from being a Final Rule under President Clinton, was watered down and re-issued several times as a Proposed Rule. Finally, in June 2003 a limited version of the original proposal was released as an Interim Final Rule. This rule only covers hot dog and ready-to-eat meat producers to test their plants, not their products, for the presence of listeria. I, along with others fighting for this regulation, remain optimistic that it will eventually be strengthened and expanded to include other at-risk foods, if not under this administration, perhaps under the next.

During these years of watching the rule wend its way through the administrative process, my husband and I were still trying to get pregnant again. After 4 out of 4 poor quality embryos transferred implanted in our first IVF cycle, we couldn’t understand why cycle after cycle was resulting in failure. I was emotionally and physically exhausted. Finally, I had had enough. I declared to my husband that, after 13 ART attempts, I couldn’t go on, at least not without a solid explanation as to why we had success pre-listeria and no success post-listeria. I turned, once again, to my internist for help. Though she had been following my progress, she was not aware of the specific protocol that I was undergoing each cycle. So I asked her to assess me with a fresh set of eyes, as if it were the first time she was seeing someone with a sepsis history who was failing to become pregnant. After a physical exam and a long talk about how I was feeling on a daily basis, she had an idea, something she had once read in a medical journal article about how sepsis can affect certain enzymes in the body. She told me to go home and fast after midnight for a series of blood tests the following morning. I was so hopeful that she was on to something and, as it turned out, she was. All of my androgen numbers were way off, something that had never before been the case and had not been re-tested by my RE after my illness -with a male factor diagnosis, it never occurred to him to review my reproductive health after my recovery. But what to do with this new information? I asked my fellow INCIIDers for advice and kept hearing the same thing over and over again: switch to the best clinic you can and don’t worry about the doctor you’re leaving behind, you want a baby not a friend. St. Barnabas was the clinic the vast majority of posters considered one of the best. I passed this information on to my internist who then offered to call St. Barnabas directly, to speak doctor-to-doctor. Her hope was to get the clinic’s director, David Sable, interested enough in my unusual medical history to take me on as a patient. Twenty-four hours later, Dr. Sable’s secretary called me to offer an appointment a few days later. I was elated and re-energized to make one last stand. And I was extremely grateful for the determination of my internist and the shove in the right direction by my INCIID friends.

In so many ways, INCIID has made a difference in my life. At first it was a source of information as I tried to learn the ins and outs of infertility treatment. Then it became my place of refuge, a place to go when I needed a cyber-shoulder to lean on or encouragement to face yet another cycle. Ultimately, it empowered me to take charge of my healthcare and to become a shoulder for others. It is the sorority I never belonged to in college, though not one I would have ever chosen to join. Though my infertility journey has ended, I continue to log on and post, to provide information, support and hope when I can. Each victory is so meaningful to me though tempered by the knowledge that not all of us will overcome our diagnoses.

If you are interested in learning more information about listeria, visit www.cdc.gov or www.cspinet.org. For news about recalls of food products, click on the Recall Information Center. Anyone wishing to contact me about my story can reach me by emailing INCIID. If you’d like to read about the ultimate outcome of our St. Barnabas cycle, please click here.