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 |  Journal writings about my youngest son's journey with spina bifida |
| My youngest child was born with a spinal anomaly. From the 17th week of my pregnancy, we knew that something was not right. This journal chronicles all the feelings and experiences we have gone through. From utter helplessness to wracking tears to immeasurable gratitude to God for His blessings. I will take you on this path that we have walked and I hope you will see the encompassing love for our son and our faith in the Lord. God bless. |
| I loved being pregnant. Not the physical aspects, so much, as just the knowledge that I was growing a baby. That we were adding to our family and this new, little person was coming to join us. We already had three children and this fourth little guy was a surprise blessing. I couldn't wait to have a newborn, again. Their smell and the warmth of their tiny, soft bodies. Mmmmmmmmmm. I threw myself into the pregnancy routine. All the usuals of eating right, exercising, taking my prenatal vitamins. I went to every doctor's appointment and took every test. That's where the journey faltered. Where we tripped. I'd been through this three times, already. The doctors would put the consent forms for the testing in front of me. I'd smile and sign them. Take the tests. Then, I would wait until the next appointment. That's when they were supposed to open my file, look over the information, and tell me everything looks normal. We've got it down, right? The whole routine? I know how it's supposed to go. Only this time, I got a phone call in the middle of the afternoon. My one year old was down for a nap and my three year old was playing outside. I was standing by the kitchen table and I remember thinking how blue the sky was. The nurse on the telephone was telling me that my tests results were abnormal. That there could be something wrong. Her voice was faded, as if she were a long way away, talking to someone else. What was she saying again? I didn't know what to say to her. Why was she doing this? She kept trying to reassure me. Telling me that usually it meant nothing. That everything would probably be fine. But I had to go for more testing. I needed a Level Two Ultrasound. She told me the date I had to go and where it would take place. I wrote it all down and felt disconnected from it. I put the paper on the kitchen counter and hung up the phone. And, then, for a moment, I just stood there. Next to the kitchen table, staring down at my hand resting on it. I felt my chest start to tighten and continue on up my neck and into my jaw. I took two deep, wavering breaths and realized what the nurse had said. Abnormal. My eyes started filling with tears and, still, I stood there. Willing it not to be true. Please, God, abnormal? My baby? The one that is already kicking me and keeping me up at night? The one that I already love with everything that is in me? The tears were running down my cheeks and meeting at my chin, dropping off onto the floor. I didn't make a sound. I just kept standing up. Because if I didn't, I didn't know how far I'd fall. |
| After the telephone call from the nurse, I felt numb. I don't even know if I called my husband at work and told him or if I waited until he got home. I don't remember what I did or how I felt until a few days later. We had to wait about a week and a half for the Level II ultrasound. It's strange how your mind works. We had three other children, and I was always busy. And I would . . . forget. We would be going about our daily routine and, all of a sudden, it was like someone slammed me in the chest. I would remember that our baby might have something wrong with him. Abnormal. It was like the air would burn my throat as I would breathe. My shoulders would drop and my head would fall forward and I would sway slightly as I fought back the sobs. I would squeeze my eyes shut and all I could do was say the same thing over and over in my head. "Please, God. Please, God. Please, God. Please, God." I really don't know if I was begging Him to get me through the moment or to have our baby be okay. Our baby. Our little, precious, amazing baby. God, please let it be a mistake. Make the test be wrong. One of the things they told me that could skew the test results was a wrong due date. And so I would calculate and recalculate. I would go over the results from our three previous ultrasounds. Just a wrong due date. That's all I want it to be. But it was always the same. So, I would go on until the next wave of panic hit. And I would calculate and recalculate. Again. And again. Please, God. Please. |
| My husband went with me to the Level II ultrasound. God bless him; he didn't know what to do to make me feel better. He spent a lot of time squeezing my hand, giving me supportive smiles, and whispering, "Everything will be all right." I spent a lot of time thinking, "No, it might not be." We went to the waiting room and checked in with the receptionist. She didn't seem overly concerned or worried about why we were there. I felt like everyone who looked at me could tell. There's something wrong with the baby. We sat down on the brown, tweed chairs and just waited. No magazines or newspapers. I stared off into space and blinked back the tears. It wasn't long and my name was called. The technician was nice. She seemed young and I wondered if she had children. It seemed like she should have children if she was going to be looking for something wrong with mine. I don't know why, that's just what I thought. She led us back to a little room that was partitioned into two stations. I laid down on the hospital bed-slash-cot and pulled my waistband down under my belly. The technician asked us why we were there and we explained that my blood tests had come back abnormal. My AFP level was higher than it was supposed to be. She nodded and then went to work. I couldn't look at the screen. I was afraid I was going to look at the ultrasound image and see some horrible defect. That I would see an image that I would have to face. Right now. I wanted to preserve the picture I had in my heart. A perfect, perfectly formed baby. So, I stared up at the ceiling and prayed. And felt the tears running down my cheeks to the pillow. "Look, there are his hands," she said. "Ohhhh, he's so cute." I turned slowly towards her and the screen. She was smiling and gesturing towards my baby. I looked and there he was, my baby. And I loved him and needed him and wanted him. I looked at the screen and realized, it didn't matter what else was there. He was mine and he was perfect. For him, for me, for us. We would face what we had to and know, that he was perfect. |
| The technician slid the wand around on my belly, stopping to add more goo, now and then. She typed in words and measured and stored pictures in the hard drive. I wanted to ask her what every word was, what every measurement meant. But, I didn't. I found that, now, I couldn't take my eyes off the screen. I needed to see everything. We watched him wave his hands up above his head and open and close his mouth. We grinned when he stuck his thumb in his mouth. "Just like his sisters," we said. The technician pointed out his arms, legs, toes, profile. Even his little boy parts. Lastly, she went over his spine. Up and down, back and forth. Taking picture after picture. It seemed to go on for a long time and it was silent except for the clicking of the computer keys. Finally, she put the wand aside. I looked up at her and panicked. "Is he okay? Did you see anything?" I begged her for any information. She smiled and said he looked completely fine to her, but that the radiologist would look over the films. The radiologist might want some more pictures, she explained, so we needed to wait until he had looked them over. Then, she left. My husband and I looked at each other and we each grinned. A wavering grin, but hopeful. She said he looked fine to her. She knows what she's looking for, right? Of course, that's her job. We bantered back and forth and we prayed. Simple words, "Thank you, God." The radiologist came back with the technician. He said he needed to check a couple of things. He first went over the spine, again. Then, he began moving the wand over the baby's heart. I felt my face sag and I watched the radiologist with a look of despair. He was pointing things out to the intern that had come in with him, murmuring things I couldn't quite make out. Then, he turned to us. "I don't see anything wrong with your baby's spine," he said. "But there is a spot on his esophagus, right by his heart." We stared at him, not wanting to understand. What was happening here? The radiologist explained that it was probably just some gray matter that would disappear, but he wanted to check it again in about two weeks. I didn't fully understand what he was saying, other than there still might be something wrong. But, he seemed optimistic and rather unconcerned about it all. "Just to be sure," he said. We thanked him and the technician and I wiped the now cold goo off my stomach. My husband and I grasped hands, without thinking, as we walked out into the hall. I stopped in front of the restroom and asked my husband to wait a minute. Then, I walked in, entered a stall, leaned into the wall, and began to sob. Sobs that came from my gut, wrenching out of me in heaving breaths and moaning sounds. When I could, I wiped my hands across my cheeks and went to the sink. I washed away the mascara and tears. Then, I went to go home with my husband, keeping my hand on our baby. |
| After the ultrasound, we had to call our families and tell them the results. "Yes, the baby's spine looks good, but there may be something wrong with his throat. It's by his heart, which makes us worry. The radiologist thinks it could just be gray matter and it will disappear by the next ultrasound. That's in two weeks. What's gray matter? We really don't know." We felt highs and lows those two weeks. But, overall, we were happy with the results and felt we could trust the radiologist that this new development would probably turn out to be nothing. The next ultrasound, we went through the same routine. This time, I watched from the beginning. I cooed over his little, upturned nose and happily counted all his toes and fingers. I felt scared, but hopeful. I watched the technician with a small, worried smile. She moved the wand over his esophagus and went slowly in small circles. Then, again, to his spine. Up and down, back and forth. This time, she didn't say anything about the results. She simply finished her exam and told us she'd be back in a minute. I looked at my husband. He squeezed my hand and nodded at me. The radiologist came back with the technician into our little partition. Right away, he told us that the spot on our baby's esophagus was gone, just like he had thought. But, instead of sending us on our way with relief, he picked up the wand and began moving it slowly over my stomach. He found the baby's spine and ran the wand carefully to the end of the spine. Then, he pointed to a small, round circle and said something. I can't remember what he said. Something about that being wrong. Why can't I remember what he said? He took measurements of the circle and told us he would write up a report and send it to my obstretician. He couldn't tell us anymore, he said. But, I have an obsessive need for information and I had been looking up information on abnormal AFP levels. I knew that there was a good probability the baby's spine hadn't developed normally. And now there was a small, round circle. On his spine. Oh, God, please help us through this. |
| My OB's office called two days later. They had received the ultrasound report and my doctor was referring me to a perinatalogist. So unprepared for this journey, I asked the nurse what a perinatalogist was. She explained that this was a doctor that specialized in pregnancies needing extra care. He had extensive experience in dealing with fetuses that had problems. Fetus? I hate that term. He's a baby. My baby. She gave me my appointment information for this new doctor and told me that I would need to keep all my OB appointments with their office, too, until they knew for sure what was going on. So, I did. My next two appointments were with my regular OB's office. It's staffed by six different doctors and they rotate which doctor you see. That way, you have met everyone, because whoever is on call will end up delivering your baby. That situation ended up causing me extra heartache. My husband and I were just beginning to accept the fact that this was happening. We were still holding it close to our hearts and hurting for our baby. Looking back, I realize I should have asked that I see my specific OB/GYN for the rest of my appointments. But, I didn't, because I didn't know. So, at both of my next two appointments, a new doctor walked in, smiled broadly, and asked me how I was doing. Each time, I just stared at them for a minute. Then, I painstakingly explained that I was fine, but that the baby had some problems. Those poor doctors. They would get serious, quickly, and grab my file, thumbing quickly through it. "I'm sorry. I didn't have time to read your file before I came in," they apologized. While this hurt at the time, it was actually a blessing from God, because it gave me practice. I was able to tell people about our baby, breaking down only slightly, and become familiar with the terminology. AFP levels. Spinal anomoly. The saccrococcygeal area. Perinatalogist. And the recipients of this information were professionals who were sympathetic and knowledgable. They were caring and reassuring, while understanding the gravity of it all. So, about a month into this new territory, and baby is a little over halfway grown. Like all expectant mothers, I find myself resting my hand on my stomach, as if caressing the baby's head. I laugh when he kicks me and tell him he's being too wild in there. When I lie in the bathtub, I watch my stomach rolling to one side and then the next. Trying to figure out if it's an elbow or a foot that's pushing on me. And, mostly, I whisper prayers. Picking up the toys at night, "Please, God, let our baby be all right." Walking through the grocery store, "God, just let him be healthy. We can deal with whatever happens, but please let him be healthy." Lying in bed at night, "God, I love this little boy so much. Thank you for sending him to us." |
| Let me say right away, I loved our perinatalogist. This man has a job that must be one of the hardest professions there is. His whole career focuses on telling parents that their baby has problems and then guiding them in what he thinks will be their baby's best care. He must see more tears and have to deliver more devastating news than we could ever comprehend. My respect for this man encompasses who he is and what he does. For our first appointment with him, we had to have an ultrasound done at his office. Same scenario as before. A technician came in, did a full set of pictures on the baby, and then asked us to wait for Dr. R. I wiped my stomach off and sat up, sitting cross-legged on the cot. My husband was sitting in a chair by my side, and I could see in his face that he didn't have anything to offer this time. We were feeling beaten down and it was so hard to get up. And, then, the door to the examining room opened and this young doctor walked in. He was probably in his late thirties and had dark brown hair and a goatie. His dark brown eyes surprised me. They didn't have an air of seriousness about them. A look that said he was about to break our hearts. Instead, he seemed jovial. Full of amusement and life and good spirits. He smiled and welcomed us like we were exactly the people he had wanted to meet. He held my hand for a moment after he shook it, and I felt . . . safe. This man would help us. He would tell us about our baby and figure out what to do next. He would guide us through this pregnancy like a cherished friend. I thank God for this doctor who could laugh in the middle of our crisis and I didn't hate him for it. Instead, he made us feel like everything was okay, again. We were just parents-to-be and that was wonderful. God, bless this man and touch his life, as he has touched so many others. |
| Dr. R. said, "Well, let's take a look at your baby and see what's going on." He ran the wand over my stomach and pointed out different things he was looking at. "The head is a nice, round shape." "Do you see this valve in the heart? That's a perfect picture! Wow, this is a really cooperative baby you have here!" All over, commenting on our baby's beautiful kidneys and large feet. Then, he said, "Okay, let's get to why you're here." and started scanning our baby's spine. He moved slowly down the spine, until he found the small, round circle. He switched to a higher magnification, measured the circle, took picture after picture, switching angles over and over. Finally, he leaned back and, keeping the circle in focus, told us what he thought. "The circle is on the bottom of the spine. It doesn't appear to involve the bones. It is fully encased, with no leaks or breaks. It also protrudes, slightly, out his back. I think this is a sacrococcygheal teratoma." I couldn't breathe. He kept talking, but I couldn't hear him, anymore. I had researched this. This teratoma is a mass of tissues, bones, and, possibly, teeth. Three germ cell layers, they call it. It also can be malignant. Cancer. Although, most of them are benign, but we hadn't had good luck with the odds, yet. Worse, it can grow, rapidly, to huge proportions. I had seen pictures where the mass connected to the back of the baby was as big as the baby itself. Because of how it is made and connected, blood is pumped through it. As it gets bigger, it taxes the baby's heart, trying to pump blood through the baby and this huge mass. If it gets big enough, it can cause the baby's heart to fail. Or it can rupture. It can involve the baby's internal organs. Either pushing on them and not allowing them to grow properly, or growing around them and not allowing them to function. Some babies have, and need, surgery in utero. Some babies need to be delivered via c-section to minimize the risk of rupturing the mass. Surgery is needed immediately after delivery. Even if the surgery is successful, and the mass is benign, it can grow back again. At any time. And then it can be malignant. Some babies never make it that far. Some babies never even make it to delivery. I began crying and Dr. R. told me not to worry. Somehow, that didn't make me angry. Instead, he told me, "Your baby's mass is really small. Only about 1 centimeter in diameter. That's really good. You will have an ultrasound every four weeks to check if it's getting bigger. But I really don't anticipate that happening." Why he didn't, I still don't know. He told us to call if we had any questions or if anything seemed "different." He told us the nurses were used to working with parents who needed extra reassurance and would be happy to talk with us at any time. He told us that he was taking over my care. He smiled and told me not to worry. And, again, I felt safe. My eyes still filled with tears, I smiled back and shook his hand. |
| For the next three months, I went in for monthly appointments and monthly ultrasounds. Our life continued as it had before. Blessedly, the time seemed to go fast. At each ultrasound, we found that the circle on the baby's spine was still the same size and in the same position. I would breathe a sigh of relief and a prayer of thankfulness until the next time. The day before each appointment was the hardest. I would worry myself sick, convincing myself that the tumor must be bigger. It would be bigger, a lot bigger, and we wouldn't have noticed it in time. I wouldn't sleep much the night before. But I loved those appointments and the time when the doctor would say, "Yep, it's the same size." We continued on, meeting with the pediatric surgical team that would be operating on our little guy soon after he was born. We met with the neonatal intensive care doctors and took a tour of the neonatal intensive care unit. We discussed what would happen directly after his delivery. There would be a NICU team right in the delivery room and they would take him upstairs right away. We researched, prepared, and prayed. The last few weeks, I had to go to weekly appointments and also go for non-stress tests. They would hook me up to a monitor that recorded any contractions and the baby's heartbeat. We always passed with flying colors. I would lie back in the recliner, listening to my baby's heart. Sometimes, I would chat with the nurses. Sometimes, I would listen to the conversations coming from the monitoring stations next to me and pray for their babies, too. Soon, our baby would be born and we would be able hold him in our arms and protect him as much as we were able. We would gently rub his cheek and rest. Knowing that God loves this tiny baby even more than we do. And that knowledge comforted me more than any other. |
| My other three children had all been born two weeks early, so I expected our newest member to make his debut somewhere around the same time. However, the 38th week of pregnancy came and went. Our perinatalogist casually asked if I'd like to be induced. I was all for it. My third baby had been an induction, because of his size, and it had only taken five hours from start to finish. We scheduled the induction for May 26th. I was ecstatic to have a solid date to look forward to and began to anticipate our little guy's birthday. Dr. R. had told us that when we got to the hospital to tell the nurses to start me right away. We wanted to be sure that the neonatal intensive care neonatalogists were on staff, as well as the pediatric surgical team. It didn't exactly work that way. When we arrived, the maternity ward was full, and being that I was an induction and could wait, I did. Finally, the nurse came in our room and told me I could get in my gown. We were going to start soon. The fear started when I was dressed for the part. Now, when I was lying in the bed, hospital gown on, and the IV started, I remembered that they were going to take my baby away. He was going to be placed on my chest for just a minute and then whisked away to the fourth floor, two floors above me. I wouldn't get to study his tiny face and try to decide who he looked like. I wouldn't get to pull his little bare body to my bare chest and nurse him during his first few moments. They would take him. Away. And I would be a mother, without her baby. The fear came in waves and brought nauseau, too. The contractions started slowly and mildly and built up to a pain that started overriding the fear. For some reason, I held out on the epidural for awhile. Maybe I thought that as long as I could feel the pain, I could keep my baby with me. But, soon, I couldn't take it any longer, and they gave me my epidural. I told the nurse that I always went from 7 centimeters to 10 centimeters really quickly. Usually within ten minutes. She smiled and nodded and I could tell she didn't quite believe me. At four hours into the induction, I was at 7 centimeters. I was shaking and uncomfortable, even though I couldn't feel the contractions. I felt like I had a really bad flu. Within five minutes of the nurse leaving the room, I started moaning and shaking harder. I was sweating. I thought the epidural was wearing off and I begged my husband not to let it. The nurse walked back in, having forgotten to check something. When she saw my face, she said she had better check me again. Sure enough, I had gone from 7 to 10 centimeters within ten minutes. I was ready to have our son. |
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