We heard the baby's heartbeat (179) on July 18th. What a beautiful sound. We heard it again on August 8th and decided to start telling our parents. Our moms were SO excited. My mom didn't cry cause she said she kind of had an idea. She was THRILLED and couldn’t wait to start telling people she was going to be a Bubby. My mother-in-law teared up at the idea and immediately started calling us mommy and daddy. After the parents knew, we told my husband's best friend and his wife. We were due only one week after their son's first birthday and they were thrilled for us. Next I told my best friend in Florida. She and I had bounced around the idea of a trip over the winter so I said “Maybe you should come in April. By then the baby will be a month old.” She got silent for a second and then just started screaming. It was awesome. We continued to tell our closest friends and everyone was so excited. I told two of my best friend’s (local) at the same time. I gave my friend Meredith a sign that said she was going to be an aunt and gave my godson a sign to show his mom that said “I’m going to be a big cousin.” They already knew but it was still fun to officially tell them. My girlfriend already had her maternity pants packed up ready for me to take home. She also gave me a “Baby on Board” sign and gave us the Flyers outfit in which her son came home from the hospital. I shared the ultra sound of my yolk sac and we all beamed with excitement. I told my other best friend (yes, I have four best girlfriends) giving her a sign that said she’d be an aunt. She was ecstatic at the news. My boss is pregnant and is due in April. We were so excited because we always joked about being pregnant together and going out on maternity leave at the same time. She hadn’t told many people so it was exciting to be able to share our pregnancies as we were only 4 weeks apart. Our baby’s family extends well beyond the two of us and our extended families. Our baby has so many loving aunts, uncles and cousins. How lucky, right?
September 2nd was our first appointment for the sequential screen. The sequential screen screens for Down Syndrome so naturally I was nervous. My husband made me feel better by taking me to Destination Maternity before the appointment. I got lots of great clothes and a phenomenal bra. (My boobs were already HUGE!) I even found a "We are Flyers Fans" tee-shit that looked uber-adorable. We went over to the appointment and aside from the 30 ounces of water sitting in my bladder, we were thrilled to be there. Today marked 12 weeks 5 days and today would be the day we would share our news with the "general public." We saw the baby moving around, the eye sockets and two arms and two legs. I'm pretty sure he* waved to us too, but the technician pretty much told me I was crazy. :) The baby wouldn't turn so the technician was having a hard time measuring the neck (part of the sequential screen.) She had me empty my bladder and had me lay on my side. Nothing was working so she called in the doctor. While the technician was out of the room I told Dave the baby's head looked really big. He told me I was nuts and that at that stage the baby's head should be 3/4 of it's length. Awwww, he was reading. :) The doctor came in and crossed her arms and then touched my leg and said the worst words we've ever heard, "There is something wrong and I think we should talk. I can't let you continue to be this excited without telling you something is wrong with the baby's brain organization." She asked the technician to “clean me up” and bring me into her office. My world stopped. My husband called my mom and told her not to tell anyone as we had told her just 10 minutes prior it was safe to share the news at work.
We walked into the doctor’s private office and it was disgustingly hot. We sat down and I was just numb. The doctor told us that there was something wrong with the baby’s brain organization and told us she did not expect that the baby would survive the pregnancy. She also said that if the baby survived the pregnancy, there was little chance at life. If the baby survived after birth, he would have little to no chance to ever see, speak, hear or walk. Essentially she told us our baby would be a vegetable. I just kept telling her I didn’t understand so she drew a picture of what the brain should look like at 12 weeks 5 days and then a picture of what our baby’s brain looked like. Our baby had Semilobar holoprosencephaly. She thought that maybe the baby had trisomy 13 and/or trisomy 18. My head was spinning and I began to dry heave. Nurses came flooding in, one with a bed pan in which I could vomit and another with a tall glass of water for me to drink and another with a cold compress for my neck. The doctor came out from behind her desk and sat on the floor in front of me. I just sat with my head in my hands and my elbows on my knees. I couldn’t hold my head up.
The doctor went back behind her desk and said that she wanted to talk to us about options. She told us that they could perform an amniocentesis to determine what was causing the lack of organization in the brain but that the test wouldn’t “fix” the baby. She said that we could continue the pregnancy and wait to “naturally” miscarry, as she expected that this would be the outcome. The third option was to terminate the pregnancy. My immediate reaction was, and I said it out loud, “we can’t do that; we’re good people.” She gave me a warm smile and told me that she has seen “some of the best people have to make the toughest decisions.” I kept asking what chance our baby had to “catch up” and be “normal” and she said none. I asked about the termination and told her I was too far along. I learned that you can have an abortion in the Commonwealth of Pennsylvania up through your 24th week of pregnancy. Shocking, isn’t it? I had always been pro choice for America but pro life for myself. I never in a million years expected to be faced with a decision like this.
The doctor told us to take the weekend (Labor Day weekend) to think about it and not to rush the decision. I asked about the termination option and she told me she would refer me to a clinic or hospital. I got very defensive and told her that if we terminated the pregnancy I would not go to a clinic. I was stern. Don’t get me wrong, Planned Parenthood helped me for many years, performing my annual gynecological exams and providing birth control, but there was no way at 30 years old that I was walking into “some clinic” to terminate my pregnancy. That was for people having abortions; this would be different. She said that they could not perform the procedure (a Dilation and Evacuation) due to its nature as they were a Catholic Hospital. That just made me feel worse and made my tears stronger. Looking back, I know that I had already made up my mind sitting in that office, though we committed to nothing. There is a lot more that was said during the appointment but I cannot remember it all. We were with the doctor for nearly an hour as she explained risks, options, diagnosis probabilities and procedures. My husband and I left the doctor’s office, in tears, called my mom to meet us at our house and drove silently back home. We were numb.
My mom met us at our house and I ran to her to give her a hug…tears falling from both our eyes. We explained everything the doctor said, and my husband and I agreed we would terminate both for our baby’s sake and for our own. I asked my husband to call the doctor immediately and schedule the appointment. I mentally checked out from being pregnant, I think as a way to eliminate the potential for greater hurt. While my hubby called the doctor, my mom and I just sat in the house. She offered to call my four best friends and I told her I was going to e-mail everyone else. I couldn’t bring myself to say the words out loud, not yet and wouldn’t be ready for a long time. I spent that weekend in another world, completely unaware of anything around me. Tuesday rolled around and I got up and got ready for work. I walked about two houses away and realized I couldn’t do it. I couldn’t face the world. My husband called everyone he needed to (his mom, dad and sister) and set up the surgery for the following Friday, September 9, 2011. He arranged for my mom to return the brand new maternity clothes I had bought THAT DAY from Destination Maternity, just one hour prior to our appointment. I didn’t eat. I didn’t sleep. I didn’t speak. I just was.
I worked from home that week and sheltered myself from the outside world. My dog stayed by my side, lying next to me and right across my stomach, as if to comfort both me and the baby. I know she knew something was going on and committed to being my partner through the lonely days while my husband had to be at work. I had no idea what was going on until Wednesday, when my husband shared with me that Thursday we’d be going to Penn Medicine for pre-admission testing and then heading to New Jersey to meet the surgeon. I knew nothing and he took care of everything. He was A-MAZ-ING during this. Talk about a man being strong for his woman….my husband is someone who doesn’t even like calling to order dinner and here he was setting up appointments, gathering insurance information and organizing what was to be the most devastating day in both our lives. He was (and is) my rock.
Thursday morning (September 8th) came and we left for Penn Medicine. My surgery would be outpatient but they needed to do the blood work the day before and would also need to determine my blood type, in case there was a need for a transfusion. Waiting, waiting and waiting was awful. We just sat there thinking about why we were there trying not to cry in the middle of the waiting room. Once we were in the back, all bets were off. I was a fountain and could barely speak. (Side note, to whomever decided hospital tissues would be the size of a toilet paper square, you’re an idiot. I went through an entire box in a 20 minute appointment.) We made our way to NJ to meet the surgeon, at his practice. Here I was sitting in a waiting room surrounded by happy couples with women who were pregnant and loving it. FML My breaking point came when I saw a young woman who looked a hot mess walk up to the counter and proceed to tell the receptionist this was her 7th pregnancy and she’s had 6 live births. Seven?!?! Are you kidding me?!?!? I just wanted this ONE! I stormed up to the desk and interrupted the receptionist and said “I’m Amanda Champagne and I think we’re just here to meet the doctor. I’m hungry because I haven’t eaten so can you please ask him to come out here.” The nurse calmly replied the doctor would be right out. A few minutes later a large man came to the desk to introduce himself. He told me we could go get lunch because he wanted to do an ultra sound. I cut him off and told him “No, I don’t want one” as tears poured from my eyes. I wasn’t prepared for that. I was about to terminate my pregnancy and the last thing I wanted to see that day was my baby. “Why are you punishing me?” is what I wanted to scream. He told me that in good conscience he couldn’t take me into the operating room without confirming that what the referring doctor saw was accurate. Looking back I’m grateful for his insistence but at the time, I wasn’t having it.
We ate at McDonald’s and I barely ate. I was sick to my stomach and it was taking all of my energy not to sit there crying. How COULD I eat? We went back to the office and were immediately taken into the patient room for the ultrasound. I told the technician I didn’t want to see anything and she told Dave to stand by my head if he didn’t want to see either. He did. She began looking at the baby and then I heard it….the wooshing. We were about to hear the heartbeat. I screamed “turn it off turn it off. I don’t want to hear it, turn it off.” She apologized and muted the machine. We never did hear anything other than the wooshing. Thank G-d for small favors. Then, with a tone that implied she wasn’t seeing anything peculiar, the technician said, “What did the last doctor say she saw?” My tears stopped immediately and I said, “Why, don’t you see anything? She said there was something wrong with the brain. Don’t you see it?” She was silent. (Note to technicians, this is why you’re supposed to be silent.). A million thoughts ran through my mind in a matter of seconds. I don’t want this baby. I don’t want to be pregnant. I’m done. How will I tell people I was wrong? I can’t do this. What do you see? I STILL hate that woman for those few minutes when she made me question the entire last week of emotions. The doctor came in and when she didn’t question the prior diagnosis, I knew our first doctor was correct in her fatal diagnosis. We went into the doctor’s office and he ran through the explanation of what was wrong, again. He pretty much said everything the first doctor said, I think. Again, I was sort of zoned out and numb. I just wanted to be done and at home, safe from the outside world. He made me sign a zillion forms and explained the procedure to me. He also told me that I had the option of inducing labor and “naturally” having the baby or to be sedated and have the D&E. I opted for the D&E based on emotional toll and physical toll the labor would have on both me and my baby. Dave let this decision be up to me, though he agreed the D&E was right for us as a family. I had to sign a form saying no one had persuaded me into the abortion. This appointment was really the first time I was faced with the word. Everyone used “termination of pregnancy” with us but the insurance companies and the state still consider it an abortion. That adds an entirely different emotional dimension to having to make a decision about a fatal prenatal diagnosis. Ugh, abortion…..everything I never believed was right. I also had to decline to see an “album of baby pictures.” It’s a tool doctors use to sway the decisions of mother’s who may be making this decision for the wrong reasons (ie- as a method of birth control.) We signed all of the forms and he gave us a book to read, Precious Lives Painful Choices: A Prenatal Decision-Making Guide. What a phenomenal resource; I recommend it to all families facing this tough decision or one similar. I have read it twice and learn new things each time. It does a really good job validating your feelings of anger, confusion, disorder, chaos, lack of control and fear. We went home and again, I just was. I tried to eat knowing that I had to fast for my surgery. I had a small dinner around 8pm and a light snack around 12am when I took my pill for the procedure. It made me vomit so everything I had eaten was out of my stomach anyway. Now, all that's left is surgery. Oy vey.
Below are pictures that I have not yet shared with many people. These were taken on Thursday, September 1, 2011, the night before we found out something was wrong. The baby was the size of a plum. At almost 13 weeks, my boobs were already an 'E,' for EEK!