Baby Blues - The Discovery
By Amanda Champagne
For the complete story, please see her blog:
Baby Blues - The Discovery
Another New Chapter
We found out we were pregnant on July 1st and the doctor confirmed it not too long after. I had an ultrasound and was told I was
six weeks 1 day. (I took my at home test at 4 weeks 5 days.) My due date was originally set for March 6, 2012 and then was reset
for March 11, 2012.
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.
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-shirt that looked
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.
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 (i.e., 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.
*We never found out the sex of the baby but I refuse to refer to my angel baby as an it.
**Editor's Note: Holoprosencephaly is one of the abnormalites that can be associated with Triploidy. See:
"Holoprosencephaly is common in chromosome anomalies, particularly trisomies 13, 13/15, 18, and 21 and triploidy."
From: Perinatal Institute