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.