Trigger warning: This post contains detailed information about late-term abortion; some people, especially those who have experienced pregnancy loss may have a negative emotional reacion.
I am pregnant. This is our first child, Ryne’s first child, my third child. I lost my first child to miscarriage around 12 weeks after being hit in the stomach by a random child at a friend’s kid’s karate practice. I was 17 and completely unprepared for parenthood, but I loved that baby and I would have been a great mom. I lost my second child to adoption on her fourth day in this world. I was 19 and relatively prepared for parenthood, which was planned, but I had survived a brutal rape and beating at the hands of her father and made an adoption plan for her because I thought it was the safest option for her. I love her with all of my heart, and I would have been a great mom.
This child has brought me heartache, too. Ryne and I planned him, down to the day of his conception, going so far as to choose our obstetrician in advance and meeting with her about a month before becoming pregnant. We chose her because she has provided outstanding care to Ryne’s mom for years, her office is nearby, she’s been in practice for 11 years, and her online reviews are mostly positive. We first met with her in January and had mostly positive feedback, though we felt she talked a lot while giving her pre-conception spiel about ovulation and some other basic things that I already knew all about. We didn’t feel like we gained much from that appointment, though we appreciated that she was nice and seemed knowledgeable and competent.
Before meeting with our obstetrician, we looked into various genetic screening options. We knew that we wanted to ensure that our baby was not affected by chromosomal abnormalities like Down Syndrome and Trisomy 18, and we learned that those screenings would be completed both by blood draw and by ultrasound as a standard of prenatal care.
We also determined that we wanted to be screened for cystic fibrosis, because 1 in 29 Caucasians is a cystic fibrosis carrier, and 1 in 2500 Caucasians is affected by cystic fibrosis. I didn’t know much about cystic fibrosis, and it never came up when I was pregnant before, so I had to do some research. I learned that “cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.” A defective CF gene causes a buildup of thick mucus in some of the body’s major organs, especially the lungs and pancreas. People with CF experience increased lung infections and damage and eventually respiratory failure, as well as the inability to create necessary pancreatic enzymes which affects the body’s ability to digest food and absorb nutrients. (1)
The other major screening we wanted to have done was for Tay-Sachs Disease. While this genetic condition is rare, it is horrifying. People with Tay-Sachs rarely live past the age of 5. About 1 in 30 people of French Canadian descent and 1 in 50 people of Irish descent carry the defective gene for Tay-Sachs disease. (2) Since Ryne and I are both French Canadian and Irish, we decided to request this screening.
Based on the The American College of Obstetricians and Gynecologists (ACOG) recommendation that “carrier screening and counseling ideally should be performed before pregnancy”, we began requesting genetic screenings from before we conceived and at every prenatal appointment we had. ACOG also recommends that “Cystic fibrosis carrier screening should be offered to all women who are considering pregnancy or are currently pregnant.” and that “Screening for Tay–Sachs disease should be offered when considering pregnancy or during pregnancy if either member of a couple is of Ashkenazi Jewish, French–Canadian, or Cajun descent.” (3) We advised our obstetrician of our heritage, that Ryne’s sister is a cystic fibrosis carrier (meaning Ryne has a 50% chance of being a CF carrier and a 25% chance of not being affected by a CF mutation), and that I only know half of my family medical history since I’m adopted. Because neither of our families have any recorded history of cystic fibrosis or Tay-Sachs disease, she dismissed our concerns. She assured us that we would get the cystic fibrosis screening later on in the pregnancy, but didn’t entertain the idea of screening for Tay-Sachs.
Our first second-trimester appointment was with one of our obstetrician’s partners, as our OB was on leave while recovering from surgery. We met with this other doctor and immediately hit it off. He was friendly, funny, knowledgeable, and seemed to really listen to our concerns. We brought up the screening again, stressing that we were already 13 weeks pregnant, and he ordered my blood draw for cystic fibrosis screening immediately.
We already knew that our insurance had denied coverage for the Tay-Sachs screening, so I spoke with our OB’s nurse to see how much that screening would cost out of pocket. We both did some research and found that our office didn’t even have an order code for this screening (meaning it isn’t offered at all), and another nearby office offered the screening for over $700. This meant that I would pay over $700 for my screening and if it came back positive, we’d pay another $700+ for Ryne to be screened. I was frustrated at this roadblock and though Ryne’s parents offered to cover the cost, we ultimately decided that our chances (based on having no family history of Tay-Sachs in either of our families) were low enough to risk foregoing the testing.
My blood was drawn and sent for testing. After 8 days of waiting, our obstetrician called and told me that I am a carrier of the CFTR mutation called Delta F508. This is the most common mutation found in Caucasian people. She insisted there was nothing to worry about and called Ryne’s doctor to have his carrier screening ordered. He went later that day for his blood draw. 12 days later, I received a notification on my phone that I had an appointment scheduled with a genetic counselor. I knew that this meant we had something to worry about. I called our OB and found out that Ryne’s blood work also showed that he was a carrier of the Delta F508 CFTR mutation. My nurse told me that they scheduled the genetics appointment before calling me so I’d have less to deal with when I received the news. She also told me that our Stepwise screening (for Down Syndrome and Trisomy 18) came back negative, meaning our baby was not affected by these conditions.
I immediately called the office where our genetic counseling appointment was scheduled and had them schedule me for an amniocentesis immediately following our counseling session. These appointments wouldn’t occur for yet another 13 days, and I would be 21 weeks pregnant by then.
In the meantime, our anatomy scan was scheduled for my 20th week. We went on July 5th with both of my parents and Ryne’s mom and we all got to experience it together. It was magical. The ultrasound technician was informative and kind, explaining all the bits of the baby that she was examining – we saw everything from inside our baby’s brain, to the chambers of his heart, to a close-up of his face, his tiny toes, and finally the confirmation that he was, as I suspected, a boy. We rejoiced tentatively in the idea of having a son, knowing that it would be weeks before we would find out if he would ever be born.
Finally, the day of our amniocentesis arrived. We met with our genetic counselor, an amazing and empathetic woman who explained the procedure, discussed the implications of cystic fibrosis, and was understanding of our decision to terminate our pregnancy if we received bad results. We then went through another anatomy scan, getting another detailed peek at our seemingly healthy (and large) baby boy. A doctor performed the amnio procedure after fully explaining it and detailing the risks. She and a nurse prepared my stomach by thoroughly cleaning it with iodine, then, while watching the ultrasound screen like a hawk, she inserted a very long, thin needle through my skin and uterine muscle, into my uterus to extract 30 ccs (cubic centimeters) of amniotic fluid. The procedure was painless and only took a few minutes.
Our genetic counselor informed us that the testing would take 8-14 days, and that she called the lab handling the testing to request our sample be given high priority because we were running out of time. I spoke with her numerous times over the next week, and she helped me prepare for the possible outcome of terminating our pregnancy by calling different clinics for information and making tentative appointments.
During our excruciating wait for results, I researched and researched and researched some more. We knew that we did not wish to create a new life that would be affected by cystic fibrosis. While the disease varies in intensity, even mild cases are serious and require therapy and medication for the duration of the child’s life and still result in a shortened life span (an average of just under 40 years) and what we consider to be a lower quality of life. Our son would likely be infertile. Treatment can be very expensive, and may not be covered by insurance. We are not wealthy people. We knew that we would not be able to give our son a happy, healthy life. We decided that if our son had cystic fibrosis, we would definitely terminate the pregnancy.
Termination in the second trimester is a horrendous ordeal, and options are very limited. To fully understand our decision and our options, I read factual, clinical information about abortion. I read personal accounts of late term abortion. I read about cystic fibrosis. I read stories from real people and families dealing with cystic fibrosis. I cried. And I cried. I mourned the potential devastation of losing our baby boy. I reeled over the decision I might have to make, and the reality of going through with that decision. I wavered, over and over, on that decision, wondering if cystic fibrosis was really that bad. I dreaded receiving the call with our results.
I made all the plans I could for the worst-case scenario while trying to hold on to the glimmer of hope that we would avoid that 25% chance of devastation. I spoke with the clinic in Chicago that would likely complete our termination procedure. They provide abortion up to the 23rd week of pregnancy based on the fetus’ head size as measured by ultrasound, but we knew that our baby has measured large for his gestational age since our first ultrasound, so we began planning for out-of-state options for help. I researched the clinic in Boulder, CO, which provides D&E abortion up to 26 weeks. I also researched the clinic in Albuquerque, NM which provides abortion with labor induction up to 32 weeks.
I learned that second trimester abortion is a 3 to 4 day process. On days 1 and 2, they mechanically dilate and thin the cervix, and on one of these days, they inject digoxin or a similar drug into the fetus’ heart and confirm that it has stopped beating. The D&E procedure (dilation and extraction) is one I wouldn’t wish on anyone – once the cervix is fully dilated and thinned, they remove the fetus and tissues from the uterus in pieces using medical instruments. A “complete D&E” procedure exists, but is not available in the Boulder clinic – this procedure would involve removing the fetus in its whole form, rather than piece by piece. The D&E procedure is less expensive than labor induction, but I would have no opportunity to see my baby if I chose this approach. The fetal tissue would be sent off to a lab for testing and then destroyed.
The Albuquerque clinic would provide labor induction, and it would cost over $7000. The digoxin and cervical dilation processes are the same, but rather than removing the fetus manually, I’d be given Pitocin to prompt labor, and I would give birth to the fully formed fetus. This was my preferred method, as I would have had the opportunity to see and hold my baby. I would have some form of closure.
In addition to researching the worst-case scenario for this pregnancy, I prepared myself for how we would handle future pregnancies. Since Ryne and I will always be carriers of the CFTR mutation, each of our pregnancies will have the same 25% chance of cystic fibrosis. We have two options for future pregnancies: in vitro fertilization with a healthy embryo as confirmed by external testing, or CVS with a potential for early termination. The in vitro process is the same as for infertile couples. I would undergo hormone therapy to produce multiple eggs at once, the eggs would be harvested and fertilized in a lab, and one or more healthy embryos would be placed into my uterus with the hope that at least one would implant and progress normally. CVS (chorionic villus sampling) is a procedure similar to amniocentesis, but is completed around 10 weeks gestation. Ryne and I would conceive naturally, then I would undergo the CVS screen and terminate the pregnancy if the results showed that the fetus was affected by cystic fibrosis. CVS carries a higher risk of miscarriage than amniocentesis because it’s done earlier in the pregnancy when the risk of spontaneous termination is naturally higher.
We spent two full weeks in nervous, fitful anticipation. We tried to go about our regular business as usual, but everything was tainted with a dark cloud of fear and sadness. I reveled in the moments when our son squirmed and kicked, but always with a sharp reminder that I shouldn’t be too happy with those movements. I spent far too much time holding my belly and sobbing, which reminded me of my last months with my daughter after I knew she would be adopted. Preparation for loss is harrowing and absolutely devastating. Planning for an unknown outcome is exhausting. We purchased a few baby items here and there during our wait, always with the knowledge that those items might bring us heartache over the coming weeks and months, or when we finally pulled them out of storage to use with a future child. I dreaded the finality of the decision I might face if we received bad news; I dreaded the potential trip we would have to make across the country, the completing of medical forms to authorize the procedure I would have to undergo, the feelings that would come with laying on a bed in some clinic while a doctor injected me with a poison that would stop my baby’s heart. I pushed away feelings of shame and self-hate. I held tight to Claire, my lovey, and to my supportive husband.
We had a vacation planned for the second week after my amnio; we were going to Chicago for Ryne’s best friend’s wedding, then out to my hometown in Ohio to spend a few days with my parents. We had hoped to receive results prior to our trip, but when I called our genetic counselor a couple of days before we were to leave, I found out that the lab handling the testing was experiencing IT issues and would likely not have results that week. We hoped results would be in early the following week. We made plans to cut our trip short in order to make it to the Chicago clinic the following Thursday to begin the termination process in case the results were bad. We left for what was supposed to be our “babymoon” knowing that it might end in a dark cloud of sadness and horror.
Between the wedding, the long car ride, and sight-and-family seeing in Ohio, we actively and purposely kept ourselves as busy as possible over the next few days. We talked about our situation constantly, helped each other to maintain positivity, and supported each other through the pain. Together, we boxed up our fears and our feelings and hid them inside ourselves, pretending outwardly that everything was okay and talking about our baby, our son, as if nothing were wrong. We expressed the excitement and joy we were feeling, but left out the darkness that loomed above us. At 22 weeks pregnant, I was already pretty big, to the point that people were already asking how many days we had left to wait for baby to arrive. There was no hiding our pregnancy to avoid talking about it. This was probably a good thing; keeping moods light and rejoicing with strangers, family, and friends probably helped us through the nightmarish wait.
And then, on Tuesday July 24, our wait was over. Ryne and I had just sat down at Hot Dog Heaven in Amherst Ohio, ready to stuff our faces with the hot dogs and malt vinegar fries of my childhood, when our genetic counselor called my cell phone. We locked eyes across the table, food forgotten, as I answered the phone. On the other end of the line, I heard “Hi Kim. I have good news.” I half listened to the rest of what she had to say as I began crying and nodded my head with a smile at Ryne. Our baby carries one copy of the mutated CFTR gene, and would be a healthy baby.
I’ve never tasted a better hot dog than after that call, while sitting in “Heaven” with my husband.
I called my mom, and crying ensued. Ryne called his mom, and crying ensued. I texted my sister, “I’m going to be a mom!!!”. We texted all of the friends and family who had been so supportive of our fears, our plans, and our wait. Tears all around. We received heartfelt messages and conversations from friends and their spouses, everyone offering congratulations and relief – I had no idea how many people were really in our corner, thinking about us constantly, and hurting over our pain. I felt so supported.
And just like that, at 23 weeks in with only about 4 months to go, Ryne and I finally feel the joy of being expectant parents. We can breathe easily. We can rejoice in our son’s movements as my belly grows each day. We can buy all the things and make all the plans, and we can be happy. We are going to be parents. We have a son.