“I’m pro-choice, but I would never have an abortion myself,” I once said to a friend. Why would I need to? I’m married, educated, stable, and healthy. I have a beautiful, whip-smart toddler. I was pregnant with our second child, and everything looked great. I love being pregnant. I get all glowy, have great hair, minimal morning sickness–all the good stuff.
My husband and I dutifully didn’t tell anyone we were pregnant until 12 weeks, like all the books say. We had an early miscarriage not long before, but knew that miscarriages were not uncommon and figured once we made it past that magic 12-week mark, we were home free. We were even so naïve we declined some of the blood testing because, “What would it change?”
My appointment schedule was a little unusual, and our routine mid-pregnancy ultrasound was scheduled a little late rather than a little too early. I was impatient to find out the gender of our baby and pushed the appointment up to 22 weeks from its originally-scheduled date of 24 weeks. I didn’t notice anything unusual about the ultrasound, though my husband said later he thought the technician spent more time on our son’s heart than the technician had spent looking over our daughter’s heart during our ultrasound with her. She’s two years old and doesn’t sleep through most nights; I’m not going to claim to be the observant one. I was a little disappointed to hear that it was a boy, which makes me feel deeply guilty now. I thought he was healthy; what else could I want?
My OB took a long time to come into the room, but I didn’t think too much of it. When she finally did come in, she spoke so fast. The baby’s heart didn’t look normal; it might even only have three chambers. She drew a picture on the back of a prescription pad. I think she came in with the appointment for the echocardiogram already scheduled for us. I knew someone with a child with a similar problem and had an idea of what was involved, but I still for some reason thought this was no big deal. I was pretty shocked and walked around in a haze for the next month or two, though this story takes place in the span of one week.
We only had to wait two days after the ultrasound to see the pediatric cardiologist. The echocardiogram confirmed the diagnosis: hypoplastic left heart syndrome—the left ventricle was completely missing and associated structures were malformed. It is more common in boys and summer babies—our December due date notwithstanding—it is fatal without a series of three complicated open-heart surgeries. The cardiologist gave us an estimated 50% survival rate to age five.
My husband and I had about five minutes to ourselves before we met with the genetic counselors. Three options had been discussed with us: surgery, termination, and making the baby as comfortable as possible until he passed. We immediately dismissed the last option as a viable choice for us.
That left us with two choices: surgery or ending the pregnancy. It’s so much to consider all at once: the effect of having two open-heart surgeries before age one on a tiny infant, the effect on our toddler, who I was already worried wouldn’t be too keen on sharing Mama, our modest incomes, the possibility of our son not being a good candidate for the surgeries despite the prenatal diagnosis, on and on.
We were at a Catholic hospital, and were surprised the option of ending the pregnancy was even mentioned. We were hesitant to discuss it with the counselors, but realized as the conversation went on that it would be okay. They were very knowledgeable and provided us with a lot of material covering both sides of the decision. The counselors told us it was highly unlikely we could end a pregnancy so far along in Indiana and laid out our options in neighboring states.
Our OB was incredibly compassionate and supportive. She was not well-versed in our options, but came back to us with a list of phone numbers to call. She said she would try the ethics committee of the hospital system her practice is under, but we would likely be denied because my life was not in danger. Indiana does not have an exception to allow abortion after 20 weeks in cases of fetal abnormality.
By the time we made our final decision Ohio had already ceased to be an option so we turned to Illinois. The first clinic I called advised us not to even try filing with our insurance company and seemed unwilling to work with us on that at all. I made an appointment with a clinic in Chicago, but was uneasy after reading online reviews. (Yes, abortion clinics have Yelp reviews, who knew?) This clinic did not seem equipped to handle someone with a wanted pregnancy at all; they wouldn’t allow my husband to be with me at any point in the process “to protect my privacy.” He’s my husband and we have a child together—what?!?!
I was thinking out loud in an appointment with our OB and mentioned that I have a former work contact at Northwestern University. It was a stretch, but I asked if that might be an avenue to pursue. They encouraged me to contact her, and I’m so glad I did. Amazingly, she was able to put me in touch with the compassionate and caring staff of Maternal and Fetal Medicine at Northwestern Memorial Hospital. From the first contact on the phone, I knew they understood how hard this decision was, and were going to treat us with respect and dignity.
Our insurance company said it would take up to a month to get pre-approved for the procedure. We didn’t have a month, so we packed up for Chicago with a backup appointment at a clinic in Granite City that seemed much more equipped to handle a family ending a wanted pregnancy, just in case we heard for sure the procedure would not be covered. The difference in cost between the hospital and the clinic was approximately $13,000.
This was the first time we left our not-quite-two-year-old with anyone other than each other. She and I were both crying hysterically when we left. I love her more than anything or anyone in the entire world.
The staff at Northwestern Memorial was amazing. They concurred with the diagnosis we received, based on the echocadiogram report, and said we had received a very thorough description of HLHS from the genetic counselors. They must have a policy in place for our type of situation; every new person who entered the room said, “My name is [such-and-such] and I’ll be taking care of you today. I’m so sorry; I know you don’t want to be here.”
The procedure itself wasn’t too difficult physically, but was emotionally wrenching. I spent most of the time in pre- and post-op sobbing, but I really do think we made the right choice. I know it’s not the “right” thing to say, but I do have doubts. I know a family with a child with HRHS—same defect, opposite side of the heart—who made it through all three surgeries with pretty minimal recovery time and is doing very well so far. Could we have had that outcome? But I also know a family with a child who died at age eight from HLHS, and there are plenty who do not make it out of infancy. I’m friendly enough with both of the moms that they know our whole story and neither condemns our decision.
No one has a crystal ball and can tell me what might have been, but I do know that our son would have had exactly zero percent chance of survival without three complicated open-heart surgeries, heart catheterizations, and many medications at an absolute minimum. Some babies never learn to nurse properly and must be hooked up to feeding tubes. There are many, many possible complications from each of the three surgeries. The cardiologist who saw the results of our individual tests estimated a 50% chance of survival to age five even with all that. We thought it was too much to ask of a tiny baby for those odds. We do not believe it’s the right choice for every family and we do not condemn those who would make a different choice.
It’s been just over two months, and seems like a bad dream now. I’m not employed where I was when I was pregnant and will be starting a new job soon. I loaned out my maternity clothes and put the baby things back in storage. My due date is one month away. People don’t ask how I’m feeling anymore.
I found a lot of support through an online group on Babycenter. I had no idea there were so many families like ours. Bless the nurse at my OB’s office; she just called with a referral for a counselor. She’s the same one who called to tell me I had a miscarriage last year. They’ve been so nice to me, and I’ve heard from others in the support group that it’s not always the case.
Why did this happen to us? My husband and I love each other very much. We’ve been married for eight years. We’re homeowners, taxpayers, and have college degrees. I eat well, exercise, and take my vitamins. I do like some sushi, soft cheese, and bagged salad mix now and again, even while pregnant I’ll admit, but I still took exceptional care of myself and my baby. I work in the nonprofit sector, literally helping people for a living. We donate to charity. We don’t let our daughter watch much TV. And, apparently, we’re the type who has a second-trimester abortion.
I heard a story on NPR about a woman in Texas who knew her baby would not survive much beyond birth, would never have a normal life. She told her story about the unnecessary ultrasound she had to endure before she could end her pregnancy, despite having one at her OB’s office the very same day. I don’t know if I would have needed an unnecessary ultrasound if we had terminated in Indiana, but I do know that our state law states that life is always the best choice. I know that I would have been informed in some manner that I could adopt out my child, or sue the baby’s father (my ever-present husband) for child support.
One downside of the support group is that I have lost my innocence about healthy pregnancies. Participants ended their pregnancies for absent organs, brain deformities, organs growing outside the baby’s tiny body, and chromosomal abnormalities. The list is long and frightening. I now truly respect what a miracle it is to have a healthy baby. I’ve received the best estimates the genetic counselors could give us at our chance of another severe heart defect; dare I tempt fate again? If the next baby has something as severe or worse, could I survive a second termination for medical reasons? I know the chances are small, but there is a support group for multiple terminations for medical reasons, so the need is there.
Our baby’s defect was not detectable before 18-ish weeks gestation. The structures are simply too small to be seen. There are many other defects that are similar. I am truly offended that the law in Indiana assumes that I simply want to “throw my baby away” and need to be told what they think I should do instead. I never in a million years thought I would be the kind of person who has an abortion; my husband and I discussed raising a child with disabilities before we ever got pregnant in the first place. Now I know better, and I wish the politicians knew better, too.
The fight for or against abortion rights deflects scarce funds that could be used to prevent unwanted pregnancies, to prevent horrible diseases, and to treat the ones that are not preventable. On a personal level, I don’t completely agree with abortion being used as birth control, but I’ve never been a pregnant, scared 13-year-old. I’ve never been in an abusive relationship. I’ve never been told one more pregnancy could kill me. I’ve never accidentally gotten pregnant with more children than I could support. I don’t want those families casting judgment on me, so I will not cast judgment on them. I will move on sadder, but wiser.