What It's Like To End A Pregnancy You Hoped For

Welcome to ”The Story We Share,” a series of Q&As that profile two people with similar identities but who live in very different places. As part of HuffPost’s Listen To America  tour, we’re exploring how people’s lived experiences overlap and diverge depending on their zip codes. What is the “American experience”? It depends where you look. 

***

Katie, a 31-year-old from California, was thrilled when she found out that she was pregnant four years ago. So was Jane, a 41-year-old from Virginia, who got pregnant three years ago. The first few months of their pregnancies were typical. They planned. They bought baby gear. They watched as their bodies changed and grew. Then as both women neared their third trimesters, they both got test results that changed everything. And they both made the wrenching decision to terminate — Katie in her 27th week of pregnancy and Jane in her 28th. 

The two women were quickly thrust into a situation neither of them had ever anticipated, figuring out how to find — and pay for — an abortion provider able to help them out. Only 16 percent of abortion-providing facilities offer abortion at or after 24 weeks , and nearly half of states in this country restrict abortion at either 20 or 22 weeks, based on shaky claims about when a fetus can feel pain. On Tuesday, the House of Representatives passed  a bill that would criminalize abortion at or after 20 weeks post-fertilization. Providers who perform abortions at that point would face up to five years in prison. The bill faces long odds in the Senate, but President Trump previously indicated he would sign it into law if it reaches his desk, and on Monday his administration said it “strongly supports” the bill. 

Here the two women discuss what it is like to decide to end a pregnancy that was very much wanted, and what it’s like to try and recover from an experience that tends to be shrouded in shame and secrecy, in a country where politicians regularly twist their heartbreak to spread lies about how abortion works. 

HuffPost: Your pregnancy was planned, so I imagine you were pretty excited. Can you tell me a bit about those early weeks?

Katie (California): My husband and I had been married for three years and had just bought a home when we decided to start trying. After five months, I got pregnant. We were elated. We announced to our friends and family when I was about 12 weeks along, and when I was 15 weeks, we had an elective ultrasound to find out the sex. It was a boy. I started buying boy clothes and decorating the room. We decided to name him Oliver.

Jane (Virginia): I found out I was pregnant when I was 38. It was a planned pregnancy, and I just went to an OB-GYN at a practice I’d been going to for years for my regular check-ups. I had the quad screen  [a second-trimester screening test that helps identify pregnancies at risk for chromosomal conditions, like Down syndrome], but beyond that they told me I didn’t need any additional testing, despite my age. [Women 35 and older are often offered extra prenatal tests as their risk of chromosomal abnormalities is higher.]

I asked if there was any need for me to do an amniocentesis [a more invasive diagnostic test that can screen for birth defects] and was just told my results were great. They told me, “They look fine.”

HuffPost: So things just seemed pretty typical?

Katie (California): My pregnancy had been totally normal, and I had no family history of any problems, so we scheduled a routine anatomy scan ultrasound at the standard time — 20 weeks. That’s the big one when they check all of the baby’s organs to make sure everything is developing properly. 

For some reason, the night before I suddenly felt very nervous and told my husband I was afraid they’d find something wrong. I’ve dealt with anxiety my whole life, so he tried to reassure me that it was just that. But I just couldn’t shake the feeling.

Jane (Virginia): I went in for my 20-week ultrasound and they said they couldn’t see the heart. My doctor told me it would be fine. I went back two weeks later and the ultrasound tech said she saw the heart beat and everything looked good—but they needed to see me again for another ultrasound in five weeks. In hindsight, it didn’t make sense. Like, if everything was fine, why did they need to see me again in five weeks? After I went through everything, I went back and requested my records. I realize they couldn’t see the face in the ultrasound, but they didn’t tell me.

HuffPost: How quickly did it become clear that something was, in fact, wrong?

Katie (California): The ultrasound technician isn’t allowed to tell you anything during the scan, but about halfway through I noticed he was concentrating on one specific area and had this concerned look on his face. At that point, my stomach dropped. He blurted, “there’s something wrong with the kidneys, the doctor will come in and talk to you,” and then he left.

Jane (Virginia): When I went in for the ultrasound at 27 weeks, that’s when I got the news. He had a complete AVSD [a type of congenital heart defect most common in babies with Down syndrome], and there a 50-percent chance he had Down syndrome. Then [the ultrasound tech] told me it was too late to terminate, and that she didn’t want to do an amnio because it might send me into early labor.  

HuffPost: What did the doctor say?

Katie (California): He said they’d found excess fluid in both of the baby’s kidneys. He explained that in utero, the fetus drinks in amniotic fluid, which then processes through the kidneys before the baby urinates it out — and that process repeats. He told us that retained fluid in the kidneys is one of the most common abnormalities they find on ultrasounds, and oftentimes it doesn’t really mean anything — most likely the baby would probably just need monitoring by a urologist as a kid and possibly a fairly easy surgery.

I still felt uneasy, so I asked him what the worst case scenario was. He said it was something called Posterior Urethral Valve (PUV) , which would mean the baby’s urethra was blocked by a piece of tissue and he wouldn’t be able to urinate out the fluid he drank in. He told us those babies usually die shortly after birth, usually within minutes or hours from lack of lung development (they literally cannot breathe) or from sepsis, because their kidneys do not work.

Jane (Virginia): They offered me a blood test that I now realize I should have been offered early in my pregnancy and that my insurance would have covered because of my age. She said it would be 10 days before I got the results.

HuffPost: What happened after that?

Katie (California): My doctor referred me to see a maternal fetal medicine specialist to go over everything, but I wasn’t able to get into see him for another two weeks. He did a repeat ultrasound and agreed with my doctor that it was probably just reflux, although my amniotic fluid was dropping. He referred me to see a pediatric nephrologist — a kidney doctor — to see what kind of follow-up we’d need after birth. I was able to get in to see her at 24 weeks. The time between those appointments was pretty terrible. I spent almost all of my time doing internet searches on possible outcomes. I wasn’t sleeping. I was hardly eating. It was awful.

When she walked in, it was clear she had a much different opinion. She was concerned the right kidney was very large and possibly inhibiting lung growth. She said the baby could need dialysis and possibly a kidney transplant after birth, which had never been mentioned before. She also brought up PUV as a worst-case scenario, and said that based on the ultrasounds, it was a strong possibility. 

Jane (Virginia): I went home and I was a complete wreck; I called them up and said I couldn’t wait, I wanted the amnio. So I went in and got one and saw a genetic counselor that day, too.

HuffPost: Then what?

Katie (California): The nephrologist told us that UC San Francisco has a fetal treatment center where they sometimes do in-utero surgeries to clear urinary tract blockages. She sent over all of our data, and they called us right away saying they could see us in three days. We immediately booked a plane ticket, since we live in the southern part of the state.

When we got there, we met with another maternal fetal medicine specialist who explained that based on everything they were seeing, she strongly suspected PUV. She was also the first doctor to bring up the possibility of abortion, saying that if I wanted any information on termination, she would help me with it. I told her I was already 24 weeks, which I thought was past the cut-off, but she explained that the law in California is that the cut-off is viability, or when the baby can potentially survive outside the womb. But with a baby with severe defects like that, sometimes they’re never viable.

The next week, I had another ultrasound with my maternal fetal medicine specialist and at that point they found my amniotic fluid was barely within the normal range, so we called UCSF and they asked us to come back immediately. They had a team of more than 50 doctors, nurses and other specialists meet to review my case. We finally met with a pediatric nephrologist who told us that statistically it was almost an impossibility that our baby could live for a year —and most likely he would pass within minutes or hours after I gave birth.

Jane (Virginia): I told the genetic counselor that I hated to say it, but I did not want to carry on with this pregnancy if I was going to have a disabled child with a huge heart defect that would require major surgery on the day he was born. 

HuffPost: Did you know somewhat quickly what you were going to do?

Katie (California): I was beside myself. I asked the doctor what he would do if it was his baby. He told me he had seen parents with less severe cases who’d had babies pass after birth, and some told him they would have terminated if they had known how much their babies were going to suffer.

It was the hardest decision of my life. I desperately wanted our baby to live, but I also couldn’t imagine birthing him only to watch him die slowly and painfully from lack of oxygen or sepsis. I told my husband that I knew we could get through the pain of continuing the pregnancy, but why should we put our son through pain? At that point, the decision became clear to me. I felt like it was selfish to carry to term just so I could hold him alive, when it was likely he would be gasping for air before dying in my arms.

Jane (Virginia): I know it’s not a decision many people will agree with, but I just couldn’t bring a child into the world like that knowing that my husband and I were both around 40, and I couldn’t think of leaving him alone in the world with Down syndrome and a huge heart defect knowing he may not even get a heart replacement and tumors. 

HuffPost: So then, after making this decision you never thought you’d have to make, you had to figure out how to actually get an abortion. How did you even begin figuring that out?

Katie (California): I called one of our doctors and told her I wasn’t sure how to go about having an abortion given I was already 26 weeks along, and she explained I had two options: a dilation and evacuation (D&E) abortion at a late-term clinic in Los Angeles, or I could get an injection to stop the baby’s heart and then be induced there in San Francisco.

At first I thought I wanted the D&E. The thought of being conscious and in labor with a dead baby was terrifying. But when I called the abortion provider, I found out it was a multiple-day process that would cost us $10,000 minimum, because it wasn’t covered by insurance. We couldn’t afford that. It would have put us into debt. 

I called my doctor back and asked her about the induction procedure. She said I would be sent to an abortion clinic where they’d use an ultrasound to help guide a needle from my abdomen into the uterus. The injection would be given to the baby who would pass away in utero. It would be quick and painless, like being anesthetized and never waking up. After, I’d be sent to a regular hospital to be induced into labor to deliver my stillborn. The injection would be $400 and the induction would be covered by my insurance.

Jane (Virginia): The genetic counselor said, “I can probably get you in with someone, but it’s going to cost a lot of money, probably $11,000.” I couldn’t think straight to figure out how to get the money, and I’m lucky that I was able to call my parents. They said, “whatever you need.” The genetic counselor immediately called and made an appointment for me with a doctor in Maryland who is one of only a few who do late-term abortions there wasn’t anyone in my state. [Editor’s note: the clinic Jane went to in Maryland closed in September of this year .]

HuffPost: So what was the actual procedure like?

Katie (California): My husband went to the clinic with me for the injection, but he wasn’t allowed into the procedure room. They gave me anti-anxiety medication, which helped. The injection only took about five or 10 minutes, and it was somewhat painful. Our son passed as soon as it was given. Then I went to the hospital to be induced.

Twenty four hours later, I delivered our stillborn son. It was absolutely the worst day of my life.

Jane (Virginia): We had to go through all the protestors. There were probably 10 of them — mostly older men — and they were yelling. It was awful. My sister went with me, and my husband met me the next day I actually didn’t want him there, because I wanted him after and he has a crazy work schedule, but he came. It was a four-day procedure.

When I got there, the doctor did an ultrasound and saw tumors—cysts—on the brain that were very large, on top of the heart defect and Down syndrome, which at that point we knew he had because we got the results from the amnio. I was not notified of the cysts before that. 

The doctor put me under twilight sedation and gave me a shot to stop the baby’s heart. My sister was not in there with me. I knew I wouldn’t remember it, and I didn’t want anyone else to have to live with it. They put in Laminaria sticks to start dilation, then I went back to the hotel, which the doctor recommended to patients. I got a lot of weird looks, because I had the IV port, and I looked pregnant and I had to walk around everywhere to try and get my labor moving. I’m sure they knew.

The next morning I went back in and they put more dilators in while I was under twilight sleep, and then I had to go back again that afternoon because I wasn’t dilating. Then I went back to the hotel to sit and wait. That night in the hotel room I went into full-on labor, which was horrific. They gave me Percocet that I took all night while I was laboring in the hotel room. My husband was there at that point.

The next morning I went in at 8 am and labored there all day. They gave me a drug that made me shake, and I sat in a room with about six other girls who were also going through it. I remember my husband crying because he couldn’t even look at me, the shaking was so bad. When I was ready to deliver, they put me under the twilight sedation again and I asked my husband not to be in there with me, because I didn’t want him to have to see. They asked me if I wanted to see the baby, and my only regret is that I did not. I feel like I should have held him, but I was in survival mode and I just could not do it. I couldn’t. The funeral director took the baby and we left that afternoon to drive home while I threw up because of the medicine and just sobbed.

HuffPost: Then you had to try and recover.

Katie (California): Physically, recovery was about the same as any other birth. Emotionally, it was awful. I started seeing a psychologist who specializes in postpartum issues and baby loss every week, and she was instrumental in my recovery. I was also able to meet women going through the same thing in an online message board, and I honestly do not think I would have survived without them. Obviously, though, the recovery is still ongoing.

Jane (Virginia): I was a wreck for months after—I cried for months on end. I told people in my life that the baby had a heart condition—which wasn’t a lie—and that he passed away. But then I felt the need to come clean my close friends, and they were all very understanding. They thought it was just awful, all around, for everyone.

Four or five months later I got pregnant again and this time I took every test as soon as I could. I had a great new doctor who understood everything. They were like, we can’t believe you weren’t offered certain tests at your age.

HuffPost: There’s a lot of talk rhetoric about guilt in the abortion debate — about this idea that so many women grow to regret their decision. Have you?

Katie (California): I do not have any guilt about our decision. We chose to have an autopsy after, and it showed both kidneys were completely cystic and wouldn’t have functioned at all. In addition, the lungs were severely undeveloped and there was brain damage. Our doctors told us they were 100 percent certain our baby would not have lived for more than a few hours. 

This experience has made me realize that people just plain don’t understand why most late-term abortions happen. I knew my son was going to die — the question was when and how. I realized I could either do nothing and he would suffocate, or I could terminate and he would basically go to sleep and never wake up. I had an abortion because I loved my baby. 

Jane (Virginia): I don’t have any regrets, but the election was a real big trigger for me. Anytime I read the comments on any type of article about this, I think it’s horrific. People are so mean-hearted. 

These interviews have been edited for length and clarity, and both names have been changed for privacy reasons.