Please let me start by telling you a little about myself. I have been happily married to my college sweetheart for a little over four years and we have been together over ten years. We live in a beautiful neighborhood and are both highly educated and gainfully employed individuals.
When my husband and I got married, people always asked when we were going to start a family. We made the decision to enjoy the first few years of “married life,” purchase a home, and for me to complete my Master’s Degree, which I did in May 2012. In December 2012, we conceived our first and only child. On January 2, 2013 I found out that I was pregnant and my husband and I, our family, and close friends were all very excited. We waited until I was 12.5 weeks to go “public” with our news. I thought that after 12 weeks that everything would be fine. I had no morning sickness, my skin was clear, my hair was growing, and my belly just kept getting bigger and bigger. I was very ignorant to everything that can go wrong with a pregnancy and to the fact that issues can be discovered later on in pregnancy.
At 17 weeks, I had a quad screening test performed. I thought nothing could possibly be wrong, but just wanted to make sure. At exactly 18 weeks, my husband and I went in for an ultrasound. We brought my mother along because she and my husband were going back and forth about the gender. My husband predicted, and was beyond convinced, that we were having a boy, and my mother predicted and was hoping for a girl. Thinking back, the ultrasound technician was rather quiet. She asked me to come back that following Monday so the doctor could view the rest of the baby’s anatomy. She stated that it was hard to get brain measurements because I had a huge fibroid above my placenta. When she asked me if I wanted to know the sex, I anxiously replied, “Yes.” She asked, “Can you guess?” and I said, “A girl” and she said, “Yes.” I did not care one way or the other and just wanted a happy, healthy baby. I really thought that my daughter was going to be a healthy little girl who would grow and develop at a normal rate. I thought I would be able to hold her while she was crying, comfort her, feed her, talk to her, change her diapers, see her off to school, see her off to prom, see her off to college, see her get married, and start a family of her own. I thought that our little girl would watch me and her father grow old and bury us both many, many years from then. I had no idea that would never be the case.
The day after we found out the sex, I received a call from my doctor. She told me that she received the results of my quad screen and that I was “at risk” for having a baby with Trisomy 18 (T18). I asked what that was and she explained. She also explained the risk factors in having a child with Trisomy 18. I was so scared and became really emotional, even though the results were not conclusive. I worried, cried everyday, barely ate, and did not sleep. I went for the scheduled ultrasound at 18 weeks and four days. The doctor found that my daughter had Hypoplastic Left Heart Syndrome, which can be treated with several surgeries. He also found that she had a cyst on her brain and fluid on her brain. He said those symptoms are common with T18 and offered me an amniocentesis just to see if we could possibly rule out T18. Three days later, I went for an amniocentesis. The results were rushed, and the following day (when I turned 19 weeks) I received a phone call that my daughter had T18. I was home alone and my mother came over for a while and we cried. My husband was out-of-town on a business trip 2.5 hours away from our home, on the campus of our college where we first met. He ended everything two hours earlier than he was supposed to out of concern for me and our baby.
When my husband arrived home, we discussed the pros and cons to keeping this pregnancy versus terminating it. As much as we loved and still love our daughter, and as much as we wanted her, we could NOT watch her suffer. We discussed our options with my best friend who is a nurse, and she was very supportive of our decision. My husband left a lot of the decision-making up to me, but I feel as my husband and as the child’s father he definitely had a say. Every doctor, nurse, and genetics counselor I spoke with before, during, and after termination felt that my husband and I did what was best for our baby. They also assured me and my husband that we did NOTHING to cause or prevent this, and this just happened “by chance.”
I could not terminate at the hospital where I received prenatal care because they are Catholic-affiliated. I was, however, referred to another hospital. At 19 weeks and four days, I scheduled an appointment so that the other hospital could do an ultrasound. The ultrasound took place when I was exactly 20 weeks pregnant. Two physicians wrote a letter on my behalf explaining why it would NOT be safe for me to continue the pregnancy. In fact, one of the doctors said this was a “lethal pregnancy.” The head physician approved for me to go through with a termination, and at 20 weeks and five days into my pregnancy an appointment was scheduled for the termination.
I was 21 weeks and three days pregnant when I went to the hospital for Labor and Delivery, and 21 weeks and five days pregnant when my daughter was “born sleeping.” She looked very peaceful and as if she had no pain and no worries. As far as most people know, I “lost the baby” or “had a miscarriage.” This is NOT something you can just share with the world without facing harsh judgment, but I’m getting to a point to where I’m not afraid anymore to speak out!
Those who are judgmental about women terminating pregnancies for medical reasons do NOT understand that women oftentimes learn of “fetal abnormalities not compatible with life” at or a little before the 20 week mark. Because I had no other children, had never been pregnant, never had a miscarriage, never had an abortion, did not use drugs or alcohol, and did not smoke cigarettes, my pregnancy was treated as a “normal” one. If I had known about my daughter’s T18 diagnosis sooner, then I would have ended the pregnancy sooner for HER SAKE. I planned this pregnancy and took birth control for several years so that I could control the timing of my first pregnancy. If this pregnancy had NOT been planned and wanted I would NOT have held my daughter and cried all these tears and told her how much I love her. I would NOT have taken pictures with the baby, my husband, and family and allowed the hospital to create a ”Memory Box” with pictures and her outfit. I would NOT have invited my parents and best friend, who is like a sister to me, to be present as I went through with this procedure. My husband and I conceived our little girl from love and because we love her so much, we decided to put her out of her misery before it even began.
I personally do NOT feel that I was mentally equipped to care for my daughter knowing what I knew. Many other women who are in my shoes feel that way. Until a person has dealt with having to make such a heartbreaking decision on top of swallowing pills, having pills shoved up their vagina, going through vaginal exams, being hooked up to an IV, being in pain, taking pain medication during the procedure, and pushing out a baby, they do NOT understand. Sure, I made the decision to go through with the procedure and it was worth it if it meant my little girl wouldn’t have to suffer. YES, I know of situations where the doctors were wrong, BUT that was in the 1980’s when medicine and technology were NOT NEARLY as ADVANCED as they are today. Also, it is NOT just the parents who are impacted when the child suffers or passes away as a result of something such as T18. Grandparents, aunts, uncles, family friends, and even other children such as siblings or cousins are very much impacted as well. Three months later and my family and I STILL MOURN the loss of my and hubby’s baby, but we’re THANKFUL that she’s in A BETTER PLACE where there’s NO PAIN AND NO SUFFERING! It’s not fair to the child or the family to force a woman to go through with a pregnancy that will more than likely result in her having a stillborn baby, or her child suffering and then dying within the first year of life, or SUFFERING FOR LIFE. People do NOT understand the DEEP emotional impact that it could have on a mother to not only receive a heartbreaking prenatal diagnosis but also to not be allowed any options in terms of where the termination happens, which procedure she has done, whether her medical insurance covers the procedure, etc. The issue of medical expenses to keep these poor children alive must be taken into account as well. As much as I miss my little girl growing inside me, I am thankful for early detection, that she does not have to suffer, that my husband and I are not genetic carriers of T18, and that there is definitely hope for healthy babies when we decide to conceive again. Also, I must add that my husband and I have grown closer together as a result of this experience and I am FULLY CONFIDENT that we will be even BETTER PARENTS when we go on to have a healthy baby (or babies) .
I am sharing my story with the rest of the world because the proposed 20 week bans have been such a “hot topic” in the media and in politics. I would love for women who experienced the same thing to feel free to share their stories as well. I am so tired of politicians (mostly male) thinking they know what’s best FOR WOMEN. There are SO MANY OTHER TOPICS that need attention such as homelessness, joblessness, crime, poverty, and I can go on and on. Again, NO HARSH JUDGMENTS! It’s MY BODY and it’s MY AND MY HUSBAND’S LIFE!