Kristi’s Story
After being together for ten years, and being married for four, Josh and I were excited to start our family. I became pregnant quickly - but unfortunately this pregnancy ended in a missed abortion - a miscarriage. I learned at 11 weeks the baby had stopped growing at 8 weeks, so I elected to have a D&C since my body wasn’t miscarrying on its own.
I was heartbroken, but I became pregnant quickly once again. After a stressful first trimester of spotting on and off - we finally made it to our 20 week ultrasound.
January 29, 2008: My 20-week scan: Everything looked good, and we learned we were having a girl! We were both so happy. The ultrasound tech found one abnormality…a little bit of fluid on her lungs. My stomach dropped. The tech reassured us that it was probably nothing and everything else looked great, but to be sure, I should see a perinatologist. My OB-GYN agreed with the techs assessment and we were told we would hear from the perinatologist office to schedule a follow up in 1-2 weeks. I left the appointment worried, but not worried enough to stop planning for my baby girl. Right after the appointment, we drove to the store and bought baby girl clothes. Before we even got to the store, we named her, Addison Kelley Hirst.
That night, though, I decided I needed more information about what “fluid on the lungs” meant and couldn’t imagine waiting 2 weeks for my next appointment. I asked a family member to put me in touch with a friend of theirs who was a perinatologist. Let’s call him Dr. X.
Dr. X was so kind and generous and the head of a top perinatology practice. Not only did he call me to answer my questions, but he also told me to come to his office that weekend (for free!) so he could look at Addison.
However, the following day, I got a call at work from my OB-GYN’s referred perinatology office. They insisted they see me the next day; I knew it was not good – an appointment that my OB-GYN said would take weeks took less than 2 days.
Friday, February 1, 2008: The ultrasound that really changed things. The doctor didn’t talk to us much as I watched her examine and re-examine Addison’s brain. I saw the same fluid on the lungs, but that wasn’t my concern anymore, because I knew something in the brain was bad. But there was no explanation during the ultrasound. She finished the exam, whispered to the tech, and finally addressed my husband and me, “Well, I see the fluid in her lungs.” “And what about her brain?” I pressed. She replied, “Well, yes there was a finding in the brain,” and then proceeded to theorize that it was Dandy Walker Syndrome, which is a genetic abnormality, not a chromosomal abnormality. An amniocentesis wouldn’t detect it. The doctor ordered an echocardiogram on Addison to see if her heart had any abnormalities, which would indicate a stronger chance of chromosome abnormality. It was very difficult to process and understand all of this information, but the echo looked perfect, and the doctor suggested a re-check in 2 weeks.
The next morning, I met Dr. X. He took an in-depth look at Addison and saw fluid and a cyst in her brain. He took more images of her brain than any other doctor we had seen. Dr. X recommended that we get an amniocentesis, and he was hopeful the fluid on her lungs hadn’t increased. At 20 weeks 4 days, an amniocentesis was performed by my insurance-covered perinatologist’s office, who told me results would take 9-12 days. I clung desperately to hope those days waiting for the results.
Thursday, February 14, 2008. It was one of the very worst days of my life. The appointment started with an ultrasound. This time the doctor could immediately see Addison’s heart was abnormal. The same heart that looked beautiful and healthy on an echo less than 2 weeks ago was now growing unevenly. I knew the situation was very bad if both Addison’s heart and brain had abnormalities. We were eventually guided into the doctor’s personal office to wait for her. While we were waiting, I saw my results printed out and sitting on the desk. I read the printout:
Abnormal findings: 1
Deletion of long leg on chromosome 13
Honestly, I knew it wasn’t good, but I didn’t have any idea how bad it was. The doctor couldn’t tell us much about the amnio findings; she had never seen this result before, so she had to look it up in a book. It was that rare. She said we needed to see the genetic counselor right away, who was at a hospital only 30 minutes away. She called the office on our behalf and gave instructions that I was not to sit in the waiting room and that I needed to be seen ASAP, placed in front of whomever was already there.
Well, I did have to sit in that waiting room and had the opportunity to imagine a life with a dying child. I sat there crying out in the open, in the middle of the waiting room surrounded by pregnant people. I majored in child development and knew the strain that a lost child or very sick child puts on a marriage. On future kids. But I still did not fully understand the gravity of our situation yet.
The genetic counselor was amazing. She gave us the facts. Our baby had more than a 90% chance of dying before birth. If she was born alive, then she had less than a 10% chance of living to see her first birthday, and her entire life would be spent in the NICU undergoing surgery after surgery. She told us that, on the spectrum of moderate to severe, our baby was severe (and that Down Syndrome would be considered moderate on this scale). That’s when it hit home for me. My baby was going to die. Not in years. In months.
It was very hard to process. I didn’t know what to ask. I wasn’t sure I was really understanding. The genetic counselor began to give us our options. The first option was that we could continue the pregnancy. I would get weekly scans and monitor her movement (I’d already been feeling her move for weeks). If her movement stopped, I would need to get to the hospital immediately because it would mean she died. There were no treatments for my daughter. So, this option meant that I could carry on and wait for her to die. Or my second option: I could terminate the pregnancy. The counselor told me I could do this at Planned Parenthood or a private clinic (there was only one in my area). I was so confused. My baby was almost certainly dying, and I had to go to an abortion clinic?? And the cost: $3,000 at Planned Parenthood or $5,000 at the private clinic. My insurance did not cover the procedure since it was not considered to be 100% fatal, mostly because there is so little research and documentation on this genetic condition.
“You have to decide by Sunday night,” she said apologetically. I had 3 days to make this decision.
She asked if Josh and I would like to see a counselor who specializes in helping couples like us make this decision. We accepted and made that appointment. I left the genetic counselor’s office in a fog of utter disbelief. I think I knew right away that I wanted to terminate but I felt guilty for that thought. And I didn’t know how to say to my husband that I thought that’s what I wanted. We didn’t discuss it at all until our counseling appointment the next day.
***
We were united in our choice. We didn’t want our daughter to suffer any more then she had to. We both wanted my body to have the best chance of getting pregnant and having children in the future. The longer a woman is pregnant, the riskier it is – carrying a dead baby carries a risk of infection, which can permanently damage the uterus and cause infertility. There was a risk to my life, as well – the further along I got in the pregnancy, the bigger the risk was to my own health. Also, I could not imagine how I would go on, growing more pregnant, and just waiting for my baby to die inside me. She had deteriorated so rapidly, I knew it was coming if I didn’t terminate. To be honest, I’m not sure what I would have chosen if her diagnosis was 100% fatal. I desperately wanted to hang on to her - but I could not bear to think about a short painful life she was sure to have should she happen to be born alive. That thought is what really pushed us to make our decision.
Josh and I were nervous to tell our families what we decided. I was too fragile to endure judgement. We shared our decision with a small circle of family members and a few close friends. Everyone we told was incredibly supportive and I’m not sure how we could have endured this time without their support. We were so incredibly lucky – not everyone gets this kind of support.
The next few days were a blur. Every time I felt my baby kick, it was like a gift – but it also was an incredibly painful reminder that I had a baby who was dying inside me. My mom called my OB-GYN and got medication prescribed so that I could sleep and calm down during the day. I was either crying or just lying in bed and staring off, unable to move, in a state of paralysis.
Monday, February 18, 2008: We drove to a private clinic surrounded by tall walls in Los Angeles. We had to be buzzed in. In addition to my husband, my mom and sister were with me, but no one could accompany me to the actual procedure.
Sitting in that waiting room was hell. I had to wait for hours. I sat there silently crying but screaming inside knowing these were the last moments my baby would be alive. Every movement might be the last one I feel. I knew I was doing what was right for us, but I wanted to hang on to her just a little longer. Delaying was not an option though because of laws and restrictions on abortions. I also knew I didn’t want Addison to suffer any pain, which is what gave me the strength to stay in that waiting room. Even though I was with my family, I felt so alone and scared. I had to do this alone. No one could come and hold my hand when it happened. Just me and the nurses and doctors I had never met.
After many hours of waiting, we were called to sign a lot of paperwork. This is when I learned that they would be euthanizing my baby that day - it was the first step of the procedure. I had no idea. Then I was placed in a prep room with my family, before being taken to the procedure room alone. The room was so small. I understand why they couldn’t allow others to come with me, but it was horrible having to go in there, conscious, and alone, knowing they were going to stop my baby’s heart from beating. I never stopped crying.
The procedure takes a few days. They put you under each day and give you medication to dilate your cervix. Then you’re sent home for the night, and you repeat the same thing the next day until you’re dilated enough for them to perform a D&E. My water broke the second day. I was given 3 IV antibiotics to prevent infection. On the third day, they checked me and said I was dilated enough to deliver the baby. I asked if I could see her. They said if I wanted to see her, they would give me medication to induce contractions and I would have to labor and deliver her myself. Alone. No family was allowed in the procedure room, and I couldn’t do it alone. I couldn’t even discuss it with my husband as I was already in the room. I chose to be put under. I still feel immense guilt about this decision. I look back and I’m disappointed with myself, that I was not strong enough to labor and be able to see and touch my baby.
I woke up after the D&E and was moved to the recovery room. I remember looking at my mom, crying and saying, “Mom, I’m not pregnant anymore.” The days and weeks following this were some of the most painful of my life. I had to take life second by second, minute by minute. I missed my baby. My arms literally ached to hold her. The phantom kicks a reminder she wasn’t with me anymore. The breast milk that came in with no baby to feed. I was in a constant state of anguish, and I still would make the same choice over and over again.
***
I am so fortunate I was able to make this choice. I took on all the pain so my daughter wouldn’t suffer at all. I used to think I made the easier choice, since society glorifies parents who “selflessly choose to carry their babies and deliver them.” I don’t judge them for this – I truly understand why someone might make a different choice.
But I thought I was weak. It’s taken many years and a lot of therapy, and I finally realized I am not weak. I could have shut down and done nothing. I could have frozen and chosen to ignore what was happening and just carry on. I didn’t. I stayed present and took it all in as painful as it was to hear. I made a decision that I felt was best for my daughter, myself and my family. After this experience, it infuriates me to hear others discuss people like me as if THEY KNOW BETTER. I promise there is not another soul on this earth who loves Addison more than my husband and me. This was a decision made of the purest love.
I’m sharing my story with the hope that it gives you another perspective, perhaps a different way to view abortion. I have shared the details because I think they are a vital part of my story. I live somewhere where abortion is considered easily accessible- relatively speaking - and it was not easy. The trauma that laws and restrictions added to my journey has weighed heavily on me. I think of what so many pregnant people will have to endure now thanks to the Supreme Court if they need an abortion and I am infuriated and devastated.
I have often been told by those who don’t support abortion that they don’t want it restricted for people “like me” – but to be clear, the majority of anti-abortion laws do not make allowances for people like me. In fact, abortions like mine (after the first trimester and even more so after 20 weeks) are the first to be restricted. I am heartbroken and mortified that my daughters might not have the same options as me if they find themselves in a situation where they need an abortion.
I want to be clear: I believe there are countless circumstances where abortion is the best choice. I was always pro-choice, but I honestly never thought I would get an abortion myself. I never imagined I would get one so far into a pregnancy. Today, I would say that I am not just pro-choice, but pro-abortion. Abortion is healthcare. It’s lifesaving. It saved me.
~Kristi Hirst
