How We Got Here
by Anne Moore
11/22/2003
When John and I found out that we were having a baby, I knew two things: That we were expecting a son and that something wasn’t quite right. As a healthy and fit 28-year-old, I had no reason to expect a complicated pregnancy, but I was frightened and while everyone around me reveled in the John and my news I held my excitement in check. My confidence in the pregnancy grew with each passing week, but try as I may I couldn’t overcome the suspicion that something was wrong, that something bad might happen. Although I never shared with John exactly how anxious I was feeling, he did know that I had some concerns. Because John is the type of person who doesn’t worry about uncontrollable unknowns, he dismissed my concerns as the sort of paranoia associated with a first pregnancy. Only after spending a considerable amount of energy worrying about the viability of my pregnancy, it began to occur to me that maybe there was nothing wrong with the pregnancy; maybe there was something wrong with the baby instead.
Looking back, I suspect it was this fear that led me to my decision to take the multiple marker or triple screen test, a blood test that measures the levels of three pregnancy hormones in the body: alpha-fetoprotein (AFP), human chorionic gonadotropin (hCG), and unconjugated estriol (uE3). I understood that if my test results were abnormal that would mean that I mayor may not have a chance of having a baby with a neural tube defect or Down syndrome. I understood, too, that the flaw in this particular blood test was that it produces a lot of false positive or abnormal, results. According to the literate I read regarding the multiple marker screen, an average of 3 to 5 percent of women return an abnormal result on the multiple marker screen, and on average only about 10 percent of those women actually discover that their baby has a problem.
I shared my decision with my doctor who gave me a sort of permission slip for both John and myself to sign indicating that we both read the informational sheet she provided regarding false positive and false negative results test results, and that we were both agreed that the test was in our baby’s best interest. As John signed the form that evening over dinner, I commented, “I just think it’s a good idea to take all of these tests.” He agreed with me wholeheartedly and his enthusiasm caught me off guard. I rounded off the conversation with a sentence that would come to foreshadow the events of the remainder of my pregnancy: “I just think that it would be best to know if anything’s wrong with the baby so that we can have the specialists we may need there when it’s born.”
So it seemed odd to me that I was driving my car away from the doctor’s office after my next appointment when I realized that my doctor had told me to visit the office lab to have blood drawn for the multiple marker test. I turned my car around. When I got back to the office, the same technician who had drawn my blood for my pregnancy test filed the vile for this test. “Girl, you’re so conscientious,” she told me. “Most mommas would just go home and forget about it.” Although I liked that technician a lot, all I could manage in response was a tight smile.
When I got home from work about two weeks later John told me that the doctor’s office had left a message on the answering machine for me. I played the message. It was from a nurse who wanted me to call her “right away” regarding my lab results. That hot ice panic sensation filled my chest and washed outward, into my arms and out through the top of my head. I looked at John and he smiled, “I’m sure there’s nothing to worry about.”
The next morning I paced the floor, waiting for the doctor’s office to open. Part of me thought that by not calling I could reverse the test’s results. John called me several times from work that morning, asking if I’d called the doctor yet. By his third call, I realized that his poker face the night before was just a guise he had worn for my benefit.
When I finally reached the doctor’s office, my call was picked up by at least three different people until I was directed to the head nurse. Each pass-off added to my anxiety. The head nurse told me that my results were back and that they read “slightly high” for a woman my age. Before sharing the results with me, she reminded me again and again of what I already knew, that this test wasn’t always accurate, that it should only be used an indicator that more testing may be necessary. By the time I hung up the phone I knew that my test results were 1/143, when they should have been 1/2,000 +, and that John and I had an appointment for an ultrasound with a maternal-fetal specialist the next afternoon. “Let Dr. Greig take a good look at the baby,” the head nurse advised me. “He’s good and will let you know if he sees anything unusual. But I’m sure nothing wrong with your baby.”
I wanted to be sure, too, but I was not.
Our ultrasound technician during the first appointment wasn’t the most personable woman in the world. Even John was unable to win her over with his warm smile and natural friendliness. She asked me if I knew why I was sent for an ultrasound. I told her yes. That wasn’t enough to satisfy her, though. “Explain to me why,” she ordered. So I did. Before beginning the examine she explained her role, and consequently our roles, during the exam. “I am not the doctor,” she said. “Don’t ask me any questions because I won’t give you any answers.” John and I nodded in agreement like frightened children.
The technician took several various measurements. As she was recording the measurements, she asked John and me if either of us worked in the medical field. We both shook our heads no. Then the technician measured the baby’s nuchal fold, the translucent space in the tissue at the back of a developing baby's neck. Since we’d read about what that measurement could indicate, John knew to ask if that our baby’s nuchal fold measurement was normal. “Remember what I said before the exam started,” the technician reminded us.
“Do we want to know what this baby is?” the technician asked us moments later. John and I looked at each other and shook our heads yes. She looked at me next. “What is it mom?”
“A boy,” I answered.
“You’re right,” she said.
John and I watched in amazement as our son swallowed, hiccupped, yawned, smacked his gums together and then brought his fists to his mouth. In all of the baby shows on television parents talk about how they’re amazed they were about to create such a precious little person together. I had never felt that amazement. Instead, I felt as if our baby was this little old soul that selected us, or was sent to us for a specific reason. I don’t know why, but watching him on the screen only reinforced that feeling.
After the exam was over, the doctor came to speak to John and me. He explained that the technician had checked the baby for all the “hard” and “soft” markers for Down syndrome. Dr. Greig flipped my chart over and began drawing, showing us what he meant by telling us that our baby had some additional water on one kidney. He told us that the water was within normal range, and that although this was a “soft” marker for Down’s that based on the ultrasound’s findings our baby had a 99.5 percent chance of being born without any problems.
The doctor then offered me the opportunity to schedule an amniocentesis at that time. I shook my head no and looked at John. I was thinking again of my fear of losing the baby. “I don’t want one. The risks of the procedure frighten me,” I explained. John was in agreement. Dr. Greig said something else about the amniocentesis and Down syndrome, but I wasn’t listening. “If he has Down’s, we’ll just have to love him that much more,” I said, looking at John.
“In that case, come back again in two months time and I’ll take a look at the baby again when he’s a little bigger,” Dr. Greig ordered. I looked at John as we walked to our car. “I would make a good mother to a child with Down syndrome,” I said. He smiled in response. Later that week John and I sat in a coffee shop and watched as a young man and young woman, both with Down syndrome, walked into the shop, placed an order and sat down. I looked at John and forced a smile. He squeezed my hand. I had never noticed adults with Down syndrome before.
The Saturday before our next ultrasound appointment, John and I took our car to the car wash. We were standing inside the building with several other customers, watching through the picture windows as our cars passed through the wash. I turned toward the door as a teenager and his father walked into the building. I smiled at the boy and he stopped in front of me.
“Hi,” he said, smiling.
“Hi,” I replied, just as enthusiastically.
The teenager was still standing in front of me, smiling. “How are you?” I asked.
“I’m good!” he said, still smiling from ear to ear. “How are you?”
Before I could answer, his father called him over. The teenager took a step toward me, still smiling. He looked as if he was about to do something specific, but then changed his mind. He walked down the hall, toward his father, looking back at me over his shoulder. “Bye!” he said, waving.
John and I looked at each other. “What was that about?”
“He has Down syndrome,” I answered.
“No, he doesn’t,” John countered, looking up the hall. “Does he really?”
“Yes, really.” I answered as I turned back toward the picture windows, watching the soapy cars lurch through the different mechanisms of the wash.
On Thursday, July 24th, John and I visited Dr. Grieg’s office again. I was 26 weeks pregnant. We bickered on our way out the door of our house over something so insignificant I can’t remember it now. I suspect now that we were more anxious than annoyed. We left in separate cars as we both planned to go to work after the ultrasound. I followed John to the drug store so that he could buy a video tape on which we could record the second ultrasound.
We were introduced a different technician named Vicki during this visit. She and John struck up a conversation about Charleston, where both had previously lived. Unlike our previous technician, Vicki followed up each measurement with an exaggerated nod of her head and the declaration, “Goooood…” The baby bounced around my uterus and proved difficult to measure that morning. “I can’t get a good measurement on the baby’s heart because he just won’t stay still,” Vicki explained. “I’ll come back to it at the end of the exam.” She wasn’t concerned.
After she finished the exam, Vicki told us that she was going to go back and try to get a good view of the baby’s heart. She and John were still talking. I was watching the baby bounce around the monitor. I suddenly noticed that the room grew quiet and I could see Vicki enlarging the baby’s heart on the screen, ten times, fifteen times, twenty times larger than actual size. I turned my head to look at Vicki and watched her work the keyboard in what seemed like frantic movements. She turned off the monitor, excused herself and promised to be right back with Dr. Greig. ‘This baby just won’t cooperate. I can’t get a good view of the heart,” she lied on her way out the door.
Looking back now, I knew as soon as Vicki left the room that something was wrong with the baby’s heart. But in the moment I was suddenly rendered completely and utterly stupid. I looked at John with a dumb smile on my face. He patted my hand.
When Dr. Greig came in to our exam room, he went straight to the ultrasound machine. He off-handedly asked me, “How have you been feeling?” I began to rattle off an answer, but soon noticed that he wasn’t really listening to me. The room was absolutely quiet. I stared at the screen knowing that if I looked at John I or the doctor I would cry. John was sliding his chair closer to my bed, and he put his arm on top of mine and squeezed my hand. I know now that John was frantically counting the chambers in the baby’s heart again and again. He told me that he kept thinking, “There aren’t four. There aren’t four.”
I finally had the courage to look at the doctor. He met my eyes and turned the ultrasound machine off. I smiled. He put his hand on my arm. I could feel the tears in my eyes. My temporary stupidity faded away and I was smart again. I thought to myself, “So, this is what was wrong all along.”
I nodded as Dr. Greig explained that our baby had a congenital heart defect called an endocardial cushion or AV Canal defect. “What that basically means is that the baby has a pretty severe hole inside his heart,” the doctor elaborated. “I also have to tell you that this particular defect is a ‘hard’ marker for Down syndrome.” John and I must have looked terrified at that moment. I think John asked that we be left alone for a minute. Dr. Greig and Vicki left.
I looked at John. He was crying, too. His armpits had soaked his shirt down to his waist. We embraced and between sobs I managed to tell him this: “I’m so scared.” Vicki came back into the room and brought us tissues. She wiped the gel off my stomach and fixed my shirt for me. She left again promising to be back soon.
John turned his cell phone on and called my mother. I think he told her there was something wrong with the baby. Vicki came back and moved us to a consultation room. Dr. Greig came in with more tissues. John apologized for crying, but Dr. Greig said he felt like crying, too. The doctor began explaining to us the particulars of our baby’s heart defect. A technician knocked on the door and handed Dr. Greig photocopies of diagrams from medical books. He explained the diagrams to us and the manner in which this defect could be repaired. I remember asking a lot of questions, but can’t remember the majority of those questions. John was still crying. Somehow I found the courage to ask if I had done something wrong to this happen. Dr. Greig grabbed my hand and answered with an emphatic “no.”
The doctor then explained to us that the majority of babies with our baby’s heart defect are miscarried in the first trimester. He also said that our baby’s heart defect is found in 40 to 60 percent of babies with Down syndrome. He encouraged us to reconsider an amniocentesis, advising us that it may be better to know then that our child had Down’s rather than at birth. “That way you can focus all your energy on the heart defect when you need to,” he said.
“The amnio scares me,” I explained.
“I know,” he replied. “You have to weigh the risk with the gain and that’s something only you and John can do. I promise, though, that if you opt for the amnio you will be in good hands. And you have to know, too, that if you decline the amnio again we will have to proceed from this point forward under the assumption that the baby does have Down syndrome.”
John and I looked at each other. “We’ll consider it,” John stated.
As we left the office, Dr. Greig encouraged us to call him with any questions or concerns about the defect or the amnio procedure. He said that he would set up an appointment for us to meet with a pediatric cardiologist, and would call with that information soon. When John and I walked outside, my parents pulled into the parking lot. We left our cars behind and went home with my parents.
After much deliberation, John and I decided that it would be in our best interest and the baby's best interest to schedule an amnio. Although we looked at the amnio as documenting the baby's "medical history" as best we could to help our doctors give our baby the best care possible, I still wondered if we were doing the right thing. I waffled again before I called Dr. Grieg’s office to make the appointment for the procedure.
“Anne, do it for me,” John pleaded. “I need to know for sure.” I knew that he did. Although I was convinced at that time that our son did have Down syndrome, I know that my husband the eternal optimist needed proof to persuade him to give up the hope that our baby would be one of the few with this particular defect who didn’t have Down’s.
Neither John nor I slept much that Thursday night, nor that weekend. We didn’t know what to think or how to feel. Was our baby going to die? We understood that the baby would need to undergo open-heart surgery to repair the defect, and that reality scared us very much. Friends and family called and offered support and prayers.
I had my amnio Monday morning. I stood in the shower before our appointment and cried, I mean really cried, worrying that our son may be killed by our selfish need to know about his condition. But the procedure went well, and our son who was always active during previous ultrasounds lay flat on his stomach, completely still and cooperating entirely. Dr. Greig ordered a F.I.S.H. test, or a rapid test of the amniotic fluid. He told us to call for the results Wednesday afternoon around lunch time. After the procedure was over I felt relieved, as if I’d done all I could to help our baby. Later that day, I noticed that familiar nagging feeling that something bad would happen had disappeared.
With John in his office and me in mine, we set up three-way conference call Wednesday afternoon. Dr. Greig told us that the results weren’t in yet, but that they may be right after lunch. He was lying and I knew it. “Can you come this afternoon to discuss the results?” he asked.
“Sure,” I answered. “My manager knows what’s going on. He would understand if I left. John?” I added a nervous giggle for good measure.
“Yeah, I can clear my schedule,” John responded.
“Why not bring your mom again?” Dr. Greig suggested. Because John is squeamish around needles, my mother had accompanied us to the amnio.
“Well, I can call her. But I think we can handle this one alone,” I said, rounding out my sentence with another forced laugh.
“Call your mom. Bring her.” Dr. Greig said before hanging up the phone.
John, my parents and I met at my parents’ house before heading over to Dr. Grieg's office. My dad had left work, too, and asked if John and I minded if he came along to the appointment, too. “No, you can come,” I said. Then I added, “But I don’t understand why we all have to go to find out that our baby is retarded.” The room was silent in response.
The waiting room was empty when we arrived at the office. I made an extra effort to smile at the receptionist, the nurses. Certainly they knew what was going on, and I didn’t want anyone to feel awkward. Everyone was watching me and I knew it. I knew, too, that my outlook on the situation would influence everyone around me, so I was determined to put as positive a spin on everything as I possibly could.
We were ushered back to an exam room, and I joked with the nurse that I had brought along my fan club. The nurse found chairs for all of us and we were sitting when Dr. Greig walked in. He looked at me and I mustered my best smile. I truly felt worse for him at that moment than I did for myself.
John’s eyes filled with tears and his chin trembled as the doctor explained the amnio results to us. I rubbed my hand across his shoulders and told him that everything would be ok. John, the eternal optimist, hadn’t let himself consider for a moment that our baby would have Down syndrome, even when the odds were stacked against us. I never knew until that moment what people meant when they commented that their bodies felt like a raw live wire. My brain felt like the black and white fuzz on the TV. screen late at night when programming has ended. I started asking questions so that I wouldn’t cry, too.
Before we left the office, Dr. Greig told us that he had set up an appointment for us to meet with a genetic counselor and pediatrician specializing in the treatment of babies and children with Down syndrome the next morning. I took the appointment card from Dr. Greig and made a joke I can’t remember now. It must have been a good joke, though, because everyone within hearing distance laughed. “I like you,” the doctor said to me.
The next morning the entire fan club went to the appointment with the genetic counselor and pediatrician. The first doctor we met with asked us if were planning on keeping the baby. After we answered affirmatively, the doctor asked John and me if we had named the baby yet.
“Yes,” I answered, as John squeezed my hand. “His name is John Archer, but we’re calling him Archie.”
The doctor noted our son’s name on her chart and she and each subsequent doctor we met with that morning referred to our baby by his name throughout our conversation. Those doctors spent two and a half hours with us discussing our concerns, explaining the development of children with Down’s syndrome, providing us with contact information for local resources. We also learned from the pediatrician that the procedure to repair Archie’s heart defect was fairly common and almost always successful. My heart soared for the first time in a week.
We left the doctors’ office with a folder filled with informational pamphlets, related articles and a book about babies with Down syndrome. “Call us with questions,” they encouraged as we walked out the door.
John called me on my way to work later that morning. “I’m over my grief period,” he told me. One of the things I love about John is his quirky way of phrasing sentences.
“Well, good,” I said. “But it is ok to feel bad.”
“Yeah, I know. But we’re going to be ok. Archie is going to be alright.”
“I know it,” I said and meant it, too. We both laughed. The laughter we shared was sincere and I knew, definitively knew, that we would be fine, all of us, John, Archie and me.
I know that difficulties lay ahead of us, some known and some unknown. I know that life before and during Archie’s surgery will be full of anxiety and worry, but I have a feeling we’ll get through it. I have a feeling someone is looking out for all three of us.
As adults, John and I had never been ones for attending church on a regular basis. Both of us had been raised as Catholics, and had attended church as children every Sunday morning for as long as we could remember. I spent a lot of time in high school and college trying to make sense of the various religions and find a place in my life for the God I knew. My questioning wasn’t a form of rebellion, but rather something I needed to do for myself. Before we were married, John and I had tried getting into the habit of attending church again, but the habit hadn’t stuck.
The day after we found out about the baby’s heart defect, John commented to me, “Kinda makes you feel like going to church again.”
“Nary an atheist in a fox hole,” I replied.
John and I went to church the Sunday before our first appointment with the pediatric cardiologist. We sat in our regular spot in the church, near the choir and band. A little boy and his father sat down in front of us. The little boy had Down syndrome. John and I smiled at each other in recognition of this latest coincidence. When it was the time during mass to offer each other the sign of peace, the little boy positioned himself in front of me. He stuck his hand out and exclaimed, “God be with you!”
I smiled, taking his hand. “And also with you.”
11/22/2003
When John and I found out that we were having a baby, I knew two things: That we were expecting a son and that something wasn’t quite right. As a healthy and fit 28-year-old, I had no reason to expect a complicated pregnancy, but I was frightened and while everyone around me reveled in the John and my news I held my excitement in check. My confidence in the pregnancy grew with each passing week, but try as I may I couldn’t overcome the suspicion that something was wrong, that something bad might happen. Although I never shared with John exactly how anxious I was feeling, he did know that I had some concerns. Because John is the type of person who doesn’t worry about uncontrollable unknowns, he dismissed my concerns as the sort of paranoia associated with a first pregnancy. Only after spending a considerable amount of energy worrying about the viability of my pregnancy, it began to occur to me that maybe there was nothing wrong with the pregnancy; maybe there was something wrong with the baby instead.
Looking back, I suspect it was this fear that led me to my decision to take the multiple marker or triple screen test, a blood test that measures the levels of three pregnancy hormones in the body: alpha-fetoprotein (AFP), human chorionic gonadotropin (hCG), and unconjugated estriol (uE3). I understood that if my test results were abnormal that would mean that I mayor may not have a chance of having a baby with a neural tube defect or Down syndrome. I understood, too, that the flaw in this particular blood test was that it produces a lot of false positive or abnormal, results. According to the literate I read regarding the multiple marker screen, an average of 3 to 5 percent of women return an abnormal result on the multiple marker screen, and on average only about 10 percent of those women actually discover that their baby has a problem.
I shared my decision with my doctor who gave me a sort of permission slip for both John and myself to sign indicating that we both read the informational sheet she provided regarding false positive and false negative results test results, and that we were both agreed that the test was in our baby’s best interest. As John signed the form that evening over dinner, I commented, “I just think it’s a good idea to take all of these tests.” He agreed with me wholeheartedly and his enthusiasm caught me off guard. I rounded off the conversation with a sentence that would come to foreshadow the events of the remainder of my pregnancy: “I just think that it would be best to know if anything’s wrong with the baby so that we can have the specialists we may need there when it’s born.”
So it seemed odd to me that I was driving my car away from the doctor’s office after my next appointment when I realized that my doctor had told me to visit the office lab to have blood drawn for the multiple marker test. I turned my car around. When I got back to the office, the same technician who had drawn my blood for my pregnancy test filed the vile for this test. “Girl, you’re so conscientious,” she told me. “Most mommas would just go home and forget about it.” Although I liked that technician a lot, all I could manage in response was a tight smile.
When I got home from work about two weeks later John told me that the doctor’s office had left a message on the answering machine for me. I played the message. It was from a nurse who wanted me to call her “right away” regarding my lab results. That hot ice panic sensation filled my chest and washed outward, into my arms and out through the top of my head. I looked at John and he smiled, “I’m sure there’s nothing to worry about.”
The next morning I paced the floor, waiting for the doctor’s office to open. Part of me thought that by not calling I could reverse the test’s results. John called me several times from work that morning, asking if I’d called the doctor yet. By his third call, I realized that his poker face the night before was just a guise he had worn for my benefit.
When I finally reached the doctor’s office, my call was picked up by at least three different people until I was directed to the head nurse. Each pass-off added to my anxiety. The head nurse told me that my results were back and that they read “slightly high” for a woman my age. Before sharing the results with me, she reminded me again and again of what I already knew, that this test wasn’t always accurate, that it should only be used an indicator that more testing may be necessary. By the time I hung up the phone I knew that my test results were 1/143, when they should have been 1/2,000 +, and that John and I had an appointment for an ultrasound with a maternal-fetal specialist the next afternoon. “Let Dr. Greig take a good look at the baby,” the head nurse advised me. “He’s good and will let you know if he sees anything unusual. But I’m sure nothing wrong with your baby.”
I wanted to be sure, too, but I was not.
The First Ultrasound
The next day before our appointment, I managed to drop my sandwich on myself during lunch and nearly cross the center lane two different times on my way to and from work. I was convinced I would throw up as John and I sat waiting our turn at the doctor’s office.Our ultrasound technician during the first appointment wasn’t the most personable woman in the world. Even John was unable to win her over with his warm smile and natural friendliness. She asked me if I knew why I was sent for an ultrasound. I told her yes. That wasn’t enough to satisfy her, though. “Explain to me why,” she ordered. So I did. Before beginning the examine she explained her role, and consequently our roles, during the exam. “I am not the doctor,” she said. “Don’t ask me any questions because I won’t give you any answers.” John and I nodded in agreement like frightened children.
The technician took several various measurements. As she was recording the measurements, she asked John and me if either of us worked in the medical field. We both shook our heads no. Then the technician measured the baby’s nuchal fold, the translucent space in the tissue at the back of a developing baby's neck. Since we’d read about what that measurement could indicate, John knew to ask if that our baby’s nuchal fold measurement was normal. “Remember what I said before the exam started,” the technician reminded us.
“Do we want to know what this baby is?” the technician asked us moments later. John and I looked at each other and shook our heads yes. She looked at me next. “What is it mom?”
“A boy,” I answered.
“You’re right,” she said.
John and I watched in amazement as our son swallowed, hiccupped, yawned, smacked his gums together and then brought his fists to his mouth. In all of the baby shows on television parents talk about how they’re amazed they were about to create such a precious little person together. I had never felt that amazement. Instead, I felt as if our baby was this little old soul that selected us, or was sent to us for a specific reason. I don’t know why, but watching him on the screen only reinforced that feeling.
After the exam was over, the doctor came to speak to John and me. He explained that the technician had checked the baby for all the “hard” and “soft” markers for Down syndrome. Dr. Greig flipped my chart over and began drawing, showing us what he meant by telling us that our baby had some additional water on one kidney. He told us that the water was within normal range, and that although this was a “soft” marker for Down’s that based on the ultrasound’s findings our baby had a 99.5 percent chance of being born without any problems.
The doctor then offered me the opportunity to schedule an amniocentesis at that time. I shook my head no and looked at John. I was thinking again of my fear of losing the baby. “I don’t want one. The risks of the procedure frighten me,” I explained. John was in agreement. Dr. Greig said something else about the amniocentesis and Down syndrome, but I wasn’t listening. “If he has Down’s, we’ll just have to love him that much more,” I said, looking at John.
“In that case, come back again in two months time and I’ll take a look at the baby again when he’s a little bigger,” Dr. Greig ordered. I looked at John as we walked to our car. “I would make a good mother to a child with Down syndrome,” I said. He smiled in response. Later that week John and I sat in a coffee shop and watched as a young man and young woman, both with Down syndrome, walked into the shop, placed an order and sat down. I looked at John and forced a smile. He squeezed my hand. I had never noticed adults with Down syndrome before.
The Second Ultrasound
John felt encouraged by the ultrasound and, I think, thought nothing more of it all for the two months until our next appointment. I, on the other hand, began counting the pregnant women I saw at work, at the grocery store, on vacation, around town. My tally reached 143 more quickly than you’d expect, so I knew that it was not unlikely that the baby boy I was carrying around inside me could have Down syndrome.The Saturday before our next ultrasound appointment, John and I took our car to the car wash. We were standing inside the building with several other customers, watching through the picture windows as our cars passed through the wash. I turned toward the door as a teenager and his father walked into the building. I smiled at the boy and he stopped in front of me.
“Hi,” he said, smiling.
“Hi,” I replied, just as enthusiastically.
The teenager was still standing in front of me, smiling. “How are you?” I asked.
“I’m good!” he said, still smiling from ear to ear. “How are you?”
Before I could answer, his father called him over. The teenager took a step toward me, still smiling. He looked as if he was about to do something specific, but then changed his mind. He walked down the hall, toward his father, looking back at me over his shoulder. “Bye!” he said, waving.
John and I looked at each other. “What was that about?”
“He has Down syndrome,” I answered.
“No, he doesn’t,” John countered, looking up the hall. “Does he really?”
“Yes, really.” I answered as I turned back toward the picture windows, watching the soapy cars lurch through the different mechanisms of the wash.
On Thursday, July 24th, John and I visited Dr. Grieg’s office again. I was 26 weeks pregnant. We bickered on our way out the door of our house over something so insignificant I can’t remember it now. I suspect now that we were more anxious than annoyed. We left in separate cars as we both planned to go to work after the ultrasound. I followed John to the drug store so that he could buy a video tape on which we could record the second ultrasound.
We were introduced a different technician named Vicki during this visit. She and John struck up a conversation about Charleston, where both had previously lived. Unlike our previous technician, Vicki followed up each measurement with an exaggerated nod of her head and the declaration, “Goooood…” The baby bounced around my uterus and proved difficult to measure that morning. “I can’t get a good measurement on the baby’s heart because he just won’t stay still,” Vicki explained. “I’ll come back to it at the end of the exam.” She wasn’t concerned.
After she finished the exam, Vicki told us that she was going to go back and try to get a good view of the baby’s heart. She and John were still talking. I was watching the baby bounce around the monitor. I suddenly noticed that the room grew quiet and I could see Vicki enlarging the baby’s heart on the screen, ten times, fifteen times, twenty times larger than actual size. I turned my head to look at Vicki and watched her work the keyboard in what seemed like frantic movements. She turned off the monitor, excused herself and promised to be right back with Dr. Greig. ‘This baby just won’t cooperate. I can’t get a good view of the heart,” she lied on her way out the door.
Looking back now, I knew as soon as Vicki left the room that something was wrong with the baby’s heart. But in the moment I was suddenly rendered completely and utterly stupid. I looked at John with a dumb smile on my face. He patted my hand.
When Dr. Greig came in to our exam room, he went straight to the ultrasound machine. He off-handedly asked me, “How have you been feeling?” I began to rattle off an answer, but soon noticed that he wasn’t really listening to me. The room was absolutely quiet. I stared at the screen knowing that if I looked at John I or the doctor I would cry. John was sliding his chair closer to my bed, and he put his arm on top of mine and squeezed my hand. I know now that John was frantically counting the chambers in the baby’s heart again and again. He told me that he kept thinking, “There aren’t four. There aren’t four.”
I finally had the courage to look at the doctor. He met my eyes and turned the ultrasound machine off. I smiled. He put his hand on my arm. I could feel the tears in my eyes. My temporary stupidity faded away and I was smart again. I thought to myself, “So, this is what was wrong all along.”
I nodded as Dr. Greig explained that our baby had a congenital heart defect called an endocardial cushion or AV Canal defect. “What that basically means is that the baby has a pretty severe hole inside his heart,” the doctor elaborated. “I also have to tell you that this particular defect is a ‘hard’ marker for Down syndrome.” John and I must have looked terrified at that moment. I think John asked that we be left alone for a minute. Dr. Greig and Vicki left.
I looked at John. He was crying, too. His armpits had soaked his shirt down to his waist. We embraced and between sobs I managed to tell him this: “I’m so scared.” Vicki came back into the room and brought us tissues. She wiped the gel off my stomach and fixed my shirt for me. She left again promising to be back soon.
John turned his cell phone on and called my mother. I think he told her there was something wrong with the baby. Vicki came back and moved us to a consultation room. Dr. Greig came in with more tissues. John apologized for crying, but Dr. Greig said he felt like crying, too. The doctor began explaining to us the particulars of our baby’s heart defect. A technician knocked on the door and handed Dr. Greig photocopies of diagrams from medical books. He explained the diagrams to us and the manner in which this defect could be repaired. I remember asking a lot of questions, but can’t remember the majority of those questions. John was still crying. Somehow I found the courage to ask if I had done something wrong to this happen. Dr. Greig grabbed my hand and answered with an emphatic “no.”
The doctor then explained to us that the majority of babies with our baby’s heart defect are miscarried in the first trimester. He also said that our baby’s heart defect is found in 40 to 60 percent of babies with Down syndrome. He encouraged us to reconsider an amniocentesis, advising us that it may be better to know then that our child had Down’s rather than at birth. “That way you can focus all your energy on the heart defect when you need to,” he said.
“The amnio scares me,” I explained.
“I know,” he replied. “You have to weigh the risk with the gain and that’s something only you and John can do. I promise, though, that if you opt for the amnio you will be in good hands. And you have to know, too, that if you decline the amnio again we will have to proceed from this point forward under the assumption that the baby does have Down syndrome.”
John and I looked at each other. “We’ll consider it,” John stated.
Finding Out
As we left the office, Dr. Greig encouraged us to call him with any questions or concerns about the defect or the amnio procedure. He said that he would set up an appointment for us to meet with a pediatric cardiologist, and would call with that information soon. When John and I walked outside, my parents pulled into the parking lot. We left our cars behind and went home with my parents.
After much deliberation, John and I decided that it would be in our best interest and the baby's best interest to schedule an amnio. Although we looked at the amnio as documenting the baby's "medical history" as best we could to help our doctors give our baby the best care possible, I still wondered if we were doing the right thing. I waffled again before I called Dr. Grieg’s office to make the appointment for the procedure.
“Anne, do it for me,” John pleaded. “I need to know for sure.” I knew that he did. Although I was convinced at that time that our son did have Down syndrome, I know that my husband the eternal optimist needed proof to persuade him to give up the hope that our baby would be one of the few with this particular defect who didn’t have Down’s.
Neither John nor I slept much that Thursday night, nor that weekend. We didn’t know what to think or how to feel. Was our baby going to die? We understood that the baby would need to undergo open-heart surgery to repair the defect, and that reality scared us very much. Friends and family called and offered support and prayers.
I had my amnio Monday morning. I stood in the shower before our appointment and cried, I mean really cried, worrying that our son may be killed by our selfish need to know about his condition. But the procedure went well, and our son who was always active during previous ultrasounds lay flat on his stomach, completely still and cooperating entirely. Dr. Greig ordered a F.I.S.H. test, or a rapid test of the amniotic fluid. He told us to call for the results Wednesday afternoon around lunch time. After the procedure was over I felt relieved, as if I’d done all I could to help our baby. Later that day, I noticed that familiar nagging feeling that something bad would happen had disappeared.
With John in his office and me in mine, we set up three-way conference call Wednesday afternoon. Dr. Greig told us that the results weren’t in yet, but that they may be right after lunch. He was lying and I knew it. “Can you come this afternoon to discuss the results?” he asked.
“Sure,” I answered. “My manager knows what’s going on. He would understand if I left. John?” I added a nervous giggle for good measure.
“Yeah, I can clear my schedule,” John responded.
“Why not bring your mom again?” Dr. Greig suggested. Because John is squeamish around needles, my mother had accompanied us to the amnio.
“Well, I can call her. But I think we can handle this one alone,” I said, rounding out my sentence with another forced laugh.
“Call your mom. Bring her.” Dr. Greig said before hanging up the phone.
John, my parents and I met at my parents’ house before heading over to Dr. Grieg's office. My dad had left work, too, and asked if John and I minded if he came along to the appointment, too. “No, you can come,” I said. Then I added, “But I don’t understand why we all have to go to find out that our baby is retarded.” The room was silent in response.
The waiting room was empty when we arrived at the office. I made an extra effort to smile at the receptionist, the nurses. Certainly they knew what was going on, and I didn’t want anyone to feel awkward. Everyone was watching me and I knew it. I knew, too, that my outlook on the situation would influence everyone around me, so I was determined to put as positive a spin on everything as I possibly could.
We were ushered back to an exam room, and I joked with the nurse that I had brought along my fan club. The nurse found chairs for all of us and we were sitting when Dr. Greig walked in. He looked at me and I mustered my best smile. I truly felt worse for him at that moment than I did for myself.
John’s eyes filled with tears and his chin trembled as the doctor explained the amnio results to us. I rubbed my hand across his shoulders and told him that everything would be ok. John, the eternal optimist, hadn’t let himself consider for a moment that our baby would have Down syndrome, even when the odds were stacked against us. I never knew until that moment what people meant when they commented that their bodies felt like a raw live wire. My brain felt like the black and white fuzz on the TV. screen late at night when programming has ended. I started asking questions so that I wouldn’t cry, too.
Before we left the office, Dr. Greig told us that he had set up an appointment for us to meet with a genetic counselor and pediatrician specializing in the treatment of babies and children with Down syndrome the next morning. I took the appointment card from Dr. Greig and made a joke I can’t remember now. It must have been a good joke, though, because everyone within hearing distance laughed. “I like you,” the doctor said to me.
The next morning the entire fan club went to the appointment with the genetic counselor and pediatrician. The first doctor we met with asked us if were planning on keeping the baby. After we answered affirmatively, the doctor asked John and me if we had named the baby yet.
“Yes,” I answered, as John squeezed my hand. “His name is John Archer, but we’re calling him Archie.”
The doctor noted our son’s name on her chart and she and each subsequent doctor we met with that morning referred to our baby by his name throughout our conversation. Those doctors spent two and a half hours with us discussing our concerns, explaining the development of children with Down’s syndrome, providing us with contact information for local resources. We also learned from the pediatrician that the procedure to repair Archie’s heart defect was fairly common and almost always successful. My heart soared for the first time in a week.
We left the doctors’ office with a folder filled with informational pamphlets, related articles and a book about babies with Down syndrome. “Call us with questions,” they encouraged as we walked out the door.
John called me on my way to work later that morning. “I’m over my grief period,” he told me. One of the things I love about John is his quirky way of phrasing sentences.
“Well, good,” I said. “But it is ok to feel bad.”
“Yeah, I know. But we’re going to be ok. Archie is going to be alright.”
“I know it,” I said and meant it, too. We both laughed. The laughter we shared was sincere and I knew, definitively knew, that we would be fine, all of us, John, Archie and me.
Here We Are
Since that day in July, we have met with our pediatric cardiologist, Dr. Horne, twice for two different echocardiograms. John and I have seen Dr. Greig three more times for diagnostic ultrasounds, and have visited with the local hospital’s neonatologist on site for a tour of the Neonatology Intensive Care Unit (NICU). We’ve interviewed pediatricians and met with a support and play group for babies and children with Down syndrome. John and I have attended Lamaze class, breastfeeding class, a class on newborn care and an infant and child CPR class. We’ve happily been the guests of honor at four different baby showers for Archie and have set up his nursery.I know that difficulties lay ahead of us, some known and some unknown. I know that life before and during Archie’s surgery will be full of anxiety and worry, but I have a feeling we’ll get through it. I have a feeling someone is looking out for all three of us.
As adults, John and I had never been ones for attending church on a regular basis. Both of us had been raised as Catholics, and had attended church as children every Sunday morning for as long as we could remember. I spent a lot of time in high school and college trying to make sense of the various religions and find a place in my life for the God I knew. My questioning wasn’t a form of rebellion, but rather something I needed to do for myself. Before we were married, John and I had tried getting into the habit of attending church again, but the habit hadn’t stuck.
The day after we found out about the baby’s heart defect, John commented to me, “Kinda makes you feel like going to church again.”
“Nary an atheist in a fox hole,” I replied.
John and I went to church the Sunday before our first appointment with the pediatric cardiologist. We sat in our regular spot in the church, near the choir and band. A little boy and his father sat down in front of us. The little boy had Down syndrome. John and I smiled at each other in recognition of this latest coincidence. When it was the time during mass to offer each other the sign of peace, the little boy positioned himself in front of me. He stuck his hand out and exclaimed, “God be with you!”
I smiled, taking his hand. “And also with you.”
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