The Right Decision for Our Family - Termination for T21

The Right Decision for Our Family

Posted on Posted in D&E, Stories, Trisomy 21 (Down syndrome)

…to spare everyone a future with lots of pain, suffering, burden and resentment, I made a choice I never thought I would make…

By Lauren

On October 22nd we found out we were pregnant. I was so excited, but also so nervous about  having a newborn again. Our routine as a family of four was getting “easy” – both my kids slept through the night, they only took one nap and I knew what to expect of their personalities. Nevertheless, I wanted one more and we were lucky to get pregnant on our second month trying. I already had one girl and one boy and this would be our tiebreaker.

My husband wanted to wait to tell our families, so for the most part it was just to him and a few random people that I couldn’t help but spill the beans too. We were living in Texas, but were hoping to deliver the baby back home in Chicago, Illinois, so I found a doctor in Austin while continuing to see my OB back “home.” In my first trimester alone I saw my baby numerous times via ultrasound. That moment of seeing my baby on the screen and hearing the heartbeat still feels incredible, and will be a memory etched in ink forever.

Even though with this pregnancy I felt more nauseated compared to my last two, I was so naïve and innocent in thinking nothing could be wrong with my baby. I had two healthy children—and this pregnancy was just like those pregnancies—so why would anything be different?

Because I was attached to my OB in Chicago, I wanted to do as many of my milestone appointments with him as possible. Although I wasn’t quite going to be 35 at the time of my delivery, at my first appointment he talked about doing NIPT (Non-Invasive Prenatal Testing) – a blood work screening test to see if there might be something genetically wrong with the baby. I agreed because I trust my doctor and his opinion. I trust my doctor as the expert in his field.

On December 14th, I flew to Chicago for the day to have the end of first trimester ultrasound and blood work. I was not expecting anything to be wrong. I was in the ultrasound room for over an hour. The tech tried an abdominal and vaginal ultrasound, had me fill my bladder, then empty my bladder, but no luck – she could not get the neck measurement of the baby. The baby would not cooperate, so she asked me to come back in a week when the baby was bigger.

Even though she didn’t get the nuchal fold measurement, I did get some pictures of my baby. The conversation I had will haunt me for a very long time. In one image, the baby’s face was looking straight ahead and the baby looked “off.” I  joked with the tech, “Am I carrying an alien?” She laughed and thanked me for making light of the situation – one in which a lot of moms get frustrated. In my opinion, there was no reason to be angry because I assumed this was common to have an uncooperative baby (even though I never had this with my first two pregnancies). A few weeks later I would learn from my doctor that there are discussions that uncooperative babies are more likely to have something wrong. I’m very relieved I did not know this at the time.

Looking back, I am fortunate that the tech couldn’t get the nuchal fold measurement because if she had, I would have been all alone with some bad news.

After the ultrasound I talked with my doctor, completed my blood work, scheduled a follow-up ultrasound for December 23rd, and left my appointment thinking everything was still completely normal with my pregnancy. Little did I know, a week later my world would be flipped upside down.

The night before the next ultrasound, still thinking nothing was wrong, we finally told my parents that we were pregnant. They were so excited. That night I felt relief that we had finally shared the news and were getting out of the first trimester.

The next morning, my doctor called me and said the NIPT results were abnormal and that we needed to do more testing. He wanted to schedule me for a CVS. He did not give me much information and told me not to Google it. But kept saying the results are very accurate, he has only had one false positive, and that there was something most likely wrong with my baby.

Immediately I broke down. I was devastated. How could this be? I felt pretty good and there were no signs that something could be wrong. Although I really wanted to go in for my ultrasound to get the nuchal fold measurement, my doctor cancelled that appointment and told me to wait for the CVS.  He said the NIPT was a screening test, and the CVS was diagnostic, so no decisions should be made until we had all the necessary data. I wanted to go in that day, but could not get an appointment until after the Christmas holiday. My doctor told me again not to Google it, but that was nearly impossible for me. I later read that after positive NIPT results, the odds were not in my favor for having a healthy baby.

My CVS was scheduled for December 27th. Before the CVS, I met with a genetic counselor who went over my NIPT results. She explained that there was a 20% chance the test was wrong and my baby would be healthy. But when she told us this, she had actually read the results wrong. My specific NIPT results showed that based on what they found in my blood, the test was 99.9% accurate.

I got called in for my CVS and asked if they could look at the nuchal fold measurement. If it was normal, I would still have hope that this was all a huge misunderstanding. Even knowing the accuracy of NIPT, I was hoping I was in the false positive category.

As soon as the baby was in position, I broke down. There was no denying that he/she had a very large nuchal fold. Without knowing the exact measurement, I said to the tech, “That is large, right?” And she answered, “Yes.” She told me the nuchal fold was measuring 6.9: more than double what the high end of a normal nuchal fold should be. I was heartbroken. Right then and there I lost all hope of having a healthy baby. Not only did this give me the assurance I needed to know that the NIPT results were accurate, but I also knew the baby was much more likely to have major heart defects, kidney issues and other serious issues leading to a life spent mostly in the hospital.

I left the hospital and was numb. I had two days to wait until the FISH results and then probably another week until the final results. They told me I couldn’t schedule a termination or do anything until I had my final results, however, later on the 27th, the genetic counselor, without the FISH results, called me and told me based on NIPT and the NF measurement, and because of the holidays, she wanted to get me on the calendar for a termination. The earliest they could scheduled me was January 5th-6th.

On December 29th, I got the call. The FISH confirmed that the baby had T21 – Down syndrome.

Although I already knew this was the result, it was still hard to hear. We had already had many conversations since the original call from my doctor that we were not suited to handle a life with a sick child. With T21, the severity of the disease is unknown until after the baby is born. Would this baby be a high functioning individual like we see out and about and in our schools, or would this child have little to low functioning and need to be cared for in a home? Based on the nuchal fold, the baby most likely had other issues besides Down Syndrome, like heart defects, kidney issues, and maybe something with the brain, and would probably need many surgeries after he/she was born.

Could we handle this life? Was this fair to do to our two healthy, living children? Could we afford the care for this child? It would be a financial burden just to take care of this child not even including the medical expenses. Would we go bankrupt? We would no longer be able to take all those family vacations we always dreamed of. Would we be able to afford activities for our other two children? Would our other two children resent us? If this child survived for a long time, who would ultimately take care of him or her? Could we leave that burden on our other children once we were unable to care for this child or once we passed? What if the baby only lived for a short while after his/her birth? Could we handle the passing of a child? Was that fair to do to our other kids? This baby would never be able to live on their own and ultimately it would change our lives forever.

So we made a decision I never in a million years thought I would make—we decided to terminate the pregnancy. I wanted this child so badly, but I was beyond petrified to think about how our life would end up if we brought this child into the world. Was it fair to bring a child into this world who we know would face unbearable undue hardship, possibly spend most of his or her life in the hospital, and possibly a home away from family? Part of me feels like this was a very selfish decision as I took away life, and another part of me thinks this was the most selfless thing I could do. Not only did I spare this child a life of suffering, but also my husband and two living children. Now I am the only one that has to deal with the burden of what I did.

I had an abortion. I had a Dilation and Evacuation (D&E) on January 5th and 6th when I was 15 weeks pregnant. The first day was physically awful, and the second day was and beyond  mentally awful. I still wonder if I made the right decision. I look around and see other pregnant people and think, “why did this happen to me?” “Why do they get to carry a healthy baby?” “Why couldn’t my baby’s heart stop beating on its own so I wouldn’t have had to make the awful decision?” I am not going to lie, from the diagnosis through the termination, I had hoped so much the baby would stop growing on his own so it ultimately would not have been my decision. As my doctor told me, that was highly unlikely and he was right. On January 6th, my baby’s life ended because I chose it.

There is not a day that goes by, and really, not more than a few minutes/hours that I do not think about this baby. I even wake in the middle of the night thinking about him or her and my decision. I never wanted to have an abortion, but I also knew I could not handle a life with a child who would need constant care. I ended a wanted pregnancy. I ended the life of a loved child, a child who probably had a life of pain and suffering. I ended a life because I knew the burden it would place on my two healthy, living children, and that was not the life I wanted for them. I ended a life because I didn’t know that we could afford the medical expenses and care a that child like this would need. I ended a life because as hard as it was, it was the right decision for our family.

Honestly, looking at photos of myself pre- and post-diagnosis and termination and I sometimes feel like I don’t recognize the innocent person in those pictures. How could I have been so naïve and innocent? How did I not know what was lurking ahead in my future? This experience has devastated me.

So yes, I had an abortion. But please don’t think for one minute this decision was easy and doesn’t haunt me. This was a decision that I will live with for the rest of my life.

Abortions aren’t just because someone had an unwanted pregnancy. Abortions happen because sometimes we get news that would turn lots of lives upside down, and sometimes, making the decision to terminate, as unbearable and hard as it is, is the right and most selfless decision one can make. Because honestly, maybe if I was just thinking about myself, I would have kept the baby. However, I couldn’t just think of myself. I had to think of what kind of life this baby would live, my husband, my children and all of our extended family. Thus, to spare everyone a future with lots of pain, suffering, burden and resentment, I made a choice I never thought I would make. I terminated a much wanted pregnancy for a much loved child that I will think about every day for the rest of my life.

 

CC0 public domain image courtesy of Jill111 via Pixabay