My husband, Tyler, and I were married on January 1, 2011. We were high school sweethearts and when we got married, we’d been together for four years. We’d talked often of starting a family after we were married and a little more settled, had some money saved up. Life had other plans and we had been married less than a month when I wasn’t feeling well. A few days later I realized I missed a period. I drove to the store and bought a pregnancy test. I didn’t even take it for three days. I already knew what it was going to say. I took seven tests before I believed it and called the doctor. I had my first OB/GYN appointment on February 2, the day before my twentieth birthday.
My husband had to be at work so I went with my mom to the doctor. I remember being so nervous and excited. We were sitting in the waiting room; I was drinking a sparkling water – all I could keep down. I was asked to use the restroom and leave a urine sample. I sat in the bathroom for at least ten minutes, trying to go; I was so anxious. Just a few minutes later in an exam room the doctor confirmed it: we were pregnant! I was given a pap smear and breast exam. Everything looked good and the doctors said there shouldn’t be any problems. At first, I didn’t know how to feel, I was anxious and apprehensive. I didn’t know what to expect.
As we started to tell our families the good news, I got excited. We could not have been more thrilled. I was given an estimated due date of September 19. This was based on a very early ultrasound, which confirmed that the baby was growing and developing correctly at about five weeks. I was in absolute heaven for the next seven weeks. I carried the ultrasound pictures with me everywhere, proudly showing them off. Even though it looked like I had a blurry little bean in my belly, it was my baby and I loved it. Tyler even took one to work to put up where he would see every day. Something he would continue to do as we had more ultrasounds.
Over the next couple months, I became the healthiest person I knew. I was taking such good care of myself and my baby. I was taking my prenatal vitamins every day, (even though they made me sick). I was eating lots of fruits and vegetables, staying away from caffeine, and limiting sugary snacks. I was caring for more than just myself now; I had to be more careful about what I put into my body because it was feeding my little one, too. I was even careful about what I used on my skin, using organic lotions and soaps, and using gloves at work when dealing with cleaning products.
I was so happy for those weeks. I told my whole family we were expecting. I couldn’t wait for my belly to expand, for this whole thing to feel real. I would give anything to go back to the innocence of those days, when I was so happy to be pregnant, so happy to be sick in the morning because that meant there was a little life inside me.
When I was twelve weeks along, we scheduled a genetic counseling session with a comprehensive ultrasound. We were not at all concerned that there was something wrong, we simply wanted another ultrasound – we wanted to see the baby again. It was something that our doctor had suggested we consider, though he was not concerned. My husband and I were both young and healthy. We were in good shape; there should have been no problems. We wanted to see him or her jumping around. That’s all we expected.
We met with the genetic counselor and she asked us about our family histories. She asked if there was any history of birth defects or abnormalities. There wasn’t. My family is teeming with babies, and in fact, two of my cousins were pregnant with healthy babies. She wasn’t concerned and told us that she didn’t see any risk of our baby being born anything but healthy. I would give anything to go back to that day and skip the ultrasound. We’d have found out eventually but I so wish that I’d had more time to just enjoy being pregnant.
We waited at least an hour to have the ultrasound. We went down to the cafeteria for lunch. We sat at a table and talked about seeing our little one. Would he or she look like a baby or still a little bean? Would we see movement? We were just excited; ultrasounds have a way of making a pregnancy feel real. I didn’t have a belly and I couldn’t feel her moving yet, but seeing her on the screen made her real.
When we finally got into the room, the technician asked me to lie back on the bed so we could begin. I lay down and lifted my shirt over a belly that had not yet given way to a bump. She squeezed out the gel that had already been warmed to body temperature. She placed the wand to my skin and immediately an image popped up on the screen. We could see the baby moving like crazy, jumping from side to side, still too small for me to feel. Nothing looked out of the ordinary to us. All we saw was a perfect little baby, a head, belly, arms and legs. We could even see a face, a perfect little nose. The tech even told us that everything looked good. Good heartbeat, good brain development.
The exam lasted over an hour. She was taking all kinds of measurements and said that our due date looked right on based on everything she saw. She then stepped out and came back in with a senior nurse; she said “to make sure she had all the doctor would need.” They looked in 3D for a few moments then told me I could clean up while the doctor looked over the pictures. Tyler and I sat in the room, talking about how active the little booger had been. We talked about whether we wanted a boy or girl. We had absolutely no reason to believe that anything had been less than perfect. In our minds our baby was just that, perfect.
My husband realized that the meter we had parked at was about to expire so he went to put some more time on it. The genetic counselor came into the room and told me the doctor would like to go over the results of the ultrasound. I should have realized that something was wrong. She escorted me into a small lunchroom with one table. I sat, and she asked where Tyler was. I told her he’d gone to feed the meter and should be back in a moment. She told me that we should wait for him to go over what the doctor had seen. Again, I should have known that something was wrong; I wasn’t even nervous. I called Tyler and told him to hurry back up to the room. When he finally returned, the counselor and a doctor I had never met sat with us.
The doctor pulled out the ultrasound pictures and began to explain what he had seen. I had to interrupt him. Was he trying to tell me something was wrong with my perfect little bean? Yes, he was saying he believed the baby had anencephaly, a cephalic disorder in which the upper part of the skull is missing and there is no brain. Hadn’t the tech just told us that the brain looked perfect? The doctor told us that the baby most likely would not live to term, and if it did, would not live outside my belly. He told me that there was no risk to me if I wanted to continue the pregnancy but that I could also terminate the pregnancy. If I wanted to continue the pregnancy? Stop.
I didn’t want to have to make that choice. I wanted my baby. I turned to my husband, my rock in that room, and he was breaking down. I could not stand to see him like that. I don’t think I have ever felt so broken in my life as I did in that moment. The moment that the happiness of my pregnancy was ripped from me. From that point on, I didn’t know what was going to happen to my baby.
As we walked out to the car, Tyler had to hold me up. My heart was broken and my legs wouldn’t work. I was crying so hard that I could hardly walk. I remember sitting in the car, holding each other. Apologizing for what was happening to us, even though it was nobody’s fault. We had done everything right. I was taking prenatal vitamins and eating healthier than I ever had. I was going to all my appointments and taking good care of myself and our baby. Still, a bad thing happened to us. Our baby was sick, he or she was not going to leave the hospital and come home with us. This was a fact that we had to accept.
As we sat in the car that day, my husband and I were as close as we had ever been. I was in Tyler’s arms, my heart in pieces, he was the only thing holding me together. I remember making him promise me that this was not going to break us. Through the tears I asked my husband to promise never to place blame or resentment. I knew in my heart that things like this could break a relationship, I needed assurance that I would not lose him. I was already losing my baby, I needed him. He promised without hesitation and I returned the promise. After we were all cried out, I just wanted to go home. We had a puppy at home, I wanted to be with him, hold him. This dog would become so important to me in this journey.
On the drive home from the hospital that day, our nurse called us. I couldn’t even think about talking to anyone, so I didn’t answer. She left a message telling us how sorry she was for the situation we were in. She said that she would be there for us no matter what choice we decided to make. I remember I kept thinking, “What choice? I want this baby.” People didn’t seem to understand that.
When we got home, my mom was the first call I made. I didn’t want to tell her the news about her first grandchild over the phone. I told her, through tears, that I needed to talk to her and asked her to come over after work. She came over immediately and I couldn’t tell her. I could not say that my baby was not going to live. Saying it out loud would make it real and I could not do that. I looked to Tyler for the strength to do it. He handed me the ultrasound photos and put his arm around me. I showed her everything the doctor had pointed out and I told her the news. Her first grandchild was not going to see his or her home. Would not learn to crawl or walk. Would not have a first Christmas.
She took me to ice cream, just a first in a string of inappropriate but well-meaning attempts to console me by my whole family. No one knows just what to do or say when a baby is going to die. Most people will never have to experience this and I wouldn’t wish it on anyone. No one knows how to treat you or how you are going to react to something. I had never even heard of this happening to someone. I knew about miscarriages but I had never thought of what I would do if my baby was alive in my belly but would not be able to survive outside my womb.
My family is really close, but I have always felt like I have an expectation to live up to. It was because of this that it was really hard for me to give them this news. The news that their grandchild, niece or nephew, cousin, was not going to live to come home. I could not do what my body was built for, the one thing that I had always known I wanted. I hadn’t been able to make the perfect child I’d been dreaming of. And so I turned inward. I quit my job. I distanced myself from my family and friends. I stopped going out. I stayed in and stopped taking care of myself. I felt that my body had betrayed me and I hated it.
I know that this is something that affects an entire family. It hurts everyone, and everyone is going to deal with it differently. I felt like I wanted to talk about it, but it was so hard to bring up that it felt like I was pretending nothing was wrong. No one liked to bring up my pregnancy, even when it became quite obvious. That, in turn, made it awkward when strangers brought it up. I wanted to talk about my baby with my family, but it almost never came up. The only person I felt comfortable bringing it up with was Tyler. He was on the inside of my personal tragedy. He came the closest to knowing how I felt. This baby was a part of us, created by the love we share. She had been conceived on our honeymoon, she was a creation of true love.
The next time I went to the doctor, I was shocked at the way I was treated. I had been avoiding the calls to make an appointment for a week. I still felt that if I didn’t acknowledge our diagnosis it didn’t exist. I didn’t want to think about it and I sure as hell didn’t want to talk about it or make any decisions. We waited in the lobby for over an hour, with pregnant ladies and brand new babies. I had expected a little bit of sensitivity. When we were finally called back, the nurse had me leave a sample and weighed me. She didn’t know that I wasn’t there for a checkup. I was here to discuss the fatal diagnosis my baby had been given. Then we went into the office. Our doctor was an older man, always had been kind to us and seemed to know his field very well. He had been my mother’s doctor a few years ago and she had liked him. On this visit, he seemed to be a different person. He was rude when I tried to ask questions and seemed intent on persuading me to terminate the pregnancy.
At this point I was craving information. I wanted to know everything there was to know about anencephaly, a condition I had never even heard of. I had called in and told my work I wasn’t coming back the day after we’d received the news so I had plenty of time, maybe too much, to research online. There wasn’t much information but I felt something was off. Everything I did find contradicted what I saw in the ultrasound pictures. I was looking at twelve week ultrasounds of babies that had confirmed cases or anencephaly. They didn’t have rounded skulls; it basically stopped on top of the eyes and was flat on top. Looking at my pictures, I could clearly see the white outline of a round head. I’m not a doctor but I could tell that the signs were not matching up.
I told the doctor I wanted another opinion. Another ultrasound. He didn’t see the point, apparently this is something that is very clear and easy to diagnose on ultrasounds. I didn’t care, I had unanswered questions, I had not been convinced that the correct diagnosis had been made. I fought him, he didn’t understand what it was to lose a baby, especially in this way. I called him on his rudeness and blatantly uncaring attitude. He reluctantly allowed me to make an appointment with another office for the exam. It was with the same technician that had performed my very first ultrasound. When we had all been so happy. She had tears in her eyes as she entered the room. Not a real vote of confidence.
She sat down with us and asked if we wanted to watch the screen or have it turned away from us. Of course, we wanted to see the screen. It’s still our baby, why wouldn’t we want to see it every chance we had? She agreed; she was just trying to make this as easy as possible on us. The tech excused herself, telling us that she was going to have a doctor sit in on the exam.
It ended up being two doctors watching the screen that day; a younger radiologist and an older one, considered to be one of the best in his field in the area. They came in and apologized for the situation we found ourselves in. I was already sick of people saying they were sorry. They also told us that they would be talking quietly during the exam, not to worry, they were just discussing what they were seeing on the screen. Right, no worries.
A few moments after the wand began sliding around my belly, the hushed mutterings began. It was freaking me out. I knew that they were not going to tell me that the other doctor had been wrong. They weren’t going to tell me that my baby was just fine. If that was all they were seeing, there would be no reason for them to be muttering quietly. They would be telling me.
This exam seemed to last forever. I already knew what they were going to say, it was just a matter of time until they said it. I was looking back and forth between my baby on the screen and my husband’s face. I was looking into his eyes and finding strength. I knew he was breaking. He was holding my hand, stroking my arm, my face. I will never forget looking up at him and he was looking at the screen. Seeing our child move and kick, just one tear rolling down his cheek. The love and sadness written on his face was both beautiful and heartbreaking. I just reached up and wiped them from his face, the tears flowing freely down my own face. He just looked down at me, the words didn’t need to be spoken, I love you so much. We’re going to get through this.
When she was done taking measurements and showing the radiologists all they needed to see, the sonographer wiped the jelly from my belly and excused herself from the room. The doctors pulled chairs up to the bed I was laying on. The younger one began, “Your baby has a condition that is not compatible with life.” Don’t ease into it or anything. I looked to the older man for confirmation. He removed his glasses, rubbing his temples, just putting off the inevitable. Telling me what I already knew. He told me that the baby did not have anencephaly; there was a brain and a skull covering it. Um, ok. So what does that mean? He said that the baby did have a cephalic disorder, something was wrong with the brain. I wanted to know more. I wanted to put a name to whatever it was that was taking my baby from me. He could not give me that. All he could tell me was that based on the extent of the abnormalities, the baby did not have a chance at survival outside the womb.
A few days after this ultrasound I had my last appointment with my OB. He was inexcusably and unforgivably rude to us. I had my mom with me to help me get through a tough conversation. I didn’t know what questions to ask or what to say. Each time my mom or I spoke up to ask a question or voice a concern, he literally threw up his hands saying, Please, let me just finish what I’m saying. Let me get this out. Seriously?
When he did finally finish and allowed us to ask questions, it was clear that he was not going to support me if I chose to continue this pregnancy. He even resorted to telling me that I could be putting myself in danger by not terminating. That was a boldface lie. He persuaded my mom to thinking that termination was the safest and best option for me. I was completely against it. At first. After two weeks of his bullying calls and messages and my mom’s worried comments, I was in a hospital bed, an IV of pitocin in my arm.
I was told that I was too far along for a d and c. I lay in that bed for thirty-eight terrifying hours. The nurses were rude and insensitive. One told me that I might not even feel if contractions started, that the baby might just “fall out”. I was scared out of my mind. The only thing that got me through was my husband by my side and the rest of my family’s support.
On my second day in the hospital, a social worker came into my room. She asked me if I had considered adoption. For this baby? Yes, she wanted to know if I wanted to give up my baby for adoption. No, I want to take my baby home. I had to explain to her that the baby was sick. I could not believe that she hadn’t even checked the chart before asking me such a question. It made me feel that I was doing something wrong. When I had been in the hospital for a day and a half, with no change in my uterus, they told me my body was not going to let the baby out.
They sent me home and told me that I could come back in four weeks and try again. They thought that my body might be more receptive to the medication if I was a little further along. By this time, I had joined several online support groups. The women in these groups were indispensable in my journey. They were so supportive in all my choices. There was no judgment passed, and this helped me come back to the decision that I wanted to have my baby. I wanted a chance to go through labor and meet my baby. I needed that. I needed to give myself a chance to say goodbye. That was all I really knew.
I started down this path with no one behind me but my husband. My family was concerned about me, and they didn’t understand why I would want to put myself through the pain of six more months of pregnancy when I knew what the outcome would be. I didn’t even have a doctor that understood what I wanted.
I went almost a month with no doctor’s visits and I was not taking good care of myself at all. I had quit my job and stayed home alone all day. Usually in bed, watching tv and not eating. I wanted to be left alone. I didn’t want to tell anyone that my child was not going to come home from the hospital. I didn’t go out, I didn’t answer my phone or return messages or texts.
I felt like such a failure. I could not create the perfect baby that I had dreamed of. I could do nothing to change the fact that my baby was going to die. I was helpless to do anything about what was happening in my own body, to my own child.
I had stopped caring for myself. I was losing weight and had stopped going out of the house. I lay in bed all day long. I wasn’t eating or taking my vitamins. I just didn’t care anymore. I was frustrated and heartbroken. I was only three months pregnant; I had looked forward to this day for so long. All I ever remember wanting to be is a mom, since I was a little kid, it’s all I ever dreamed about.
When I finally started answering my phone again, a family member recommended her doctor, he had delivered three of her four girls and she trusted him. She told me that he was a caring guy, he had several children himself and that he could help me. So I called his office and made the appointment. When I went in to see him, I was completely unprepared. I had assumed that my doctor would forward my records and the baby’s diagnosis, I had gone to the office and signed the paperwork requesting he do so. Needless to say, he hadn’t.
When the doctor entered the room, he asked me if I was excited for this baby. I told him that I had been overjoyed, now I was scared. He wanted to know what had changed my feelings. I had to tell him everything I knew about the baby’s condition. He was so sympathetic, giving me room to ask questions and cry. He wanted to confirm the diagnosis, so he sent me to a high-risk OB/GYN for a more thorough ultrasound.
I waited two weeks for this ultrasound. When it was finally time, I was a nervous mess. I was trying so hard to keep positive that I had halfway convinced myself that they were going to tell me that my baby was just fine. Everyone else had been wrong. That’s not what happened. The tech had barely placed the wand to my belly when she excused herself to get the doctor. She said that he would want to sit in on this exam.
Damn it. The doctor entered the room, already looking grim. The technician placed the sonogram wand back to my skin and began taking measurements and looking at the baby. I can very clearly remember seeing my little one bouncing around like crazy. Still looked so perfect to me. After a few minutes, the doctor asked to take over.
That’s never a good sign. He showed me the baby’s kidneys. He told me they were about five times larger than they should be. He showed me that there were many cysts within the kidneys. The doctor showed us that the baby had an encephalocele, which he explained was an opening in the back of the skull, allowing brain matter to poke out. The doctor said that the kidneys could become so enlarged that a c-section becomes necessary. He also showed on the screen that there was no amniotic fluid surrounding the baby, making it harder to get a clear picture. He told us that he believed the baby had either Trisomy 13 or Meckle Gruber Syndrome.
Regardless, based on the baby’s abnormalities, this was a condition that was “incompatible with life”. The only bit of reassurance that this doctor could offer was that the rate of recurrence for Trisomy 13 was less that 1%. However, the rate of recurrence for MGS was 25%.
I was heartbroken. I had been hoping and praying to get a different diagnosis constantly for two weeks. Please, let this doctor have different news for us. Never once did it cross my mind that we could get much worse news. I was having a hard time moving away from the most negative bit of news, 25% chance that this would happen to us again? I felt like I hadn’t even heard anything else. 25%. That feels like a huge number, especially in the midst of a pregnancy that will not end in my happily ever after.
After this exam, I had another appointment with my new doctor. When I went in to see him, I was hopeless and heartbroken. I had no hope for this pregnancy and no idea what I wanted to do. I did know that I wanted to spend as little time as possible in the hospital and that I did want to be pregnant for as long as possible. I wanted to feel my baby move inside me, even though I knew that was going to be hard. I wanted to give my child as long and comfortable a life as I could.
He was always so very kind to myself and my husband. It was time to discuss what we were going to do; this was going to be a hard conversation. I told the doctor that I did not want to terminate this pregnancy, even though we knew that the baby was not going to live. We wanted to check the baby’s heartbeat at each appointment and avoid any unnecessary tests. We were going to keep me as healthy as we could and let nature run its course with the baby. That was the plan.
We kept up the normal timeline for checkups. As I grew a larger belly, I saw the doctor more often. At each appointment we checked baby’s heartbeat, each time it was so strong. He allowed me to opt out of the gestational diabetes test and the strep b test. I cannot even begin to describe how important this doctor became to my husband and I. He was so caring and kind. He addressed all of our concerns and provided solutions as best he could. He believed in me, in my strength and ability to continue my pregnancy. I thank God every day for leading me to this wonderful caregiver. I could not have carried to term without the confidence he had in me.
As I got a little further along in my pregnancy, I began to feel the baby move. I can very clearly remember the first time I felt her move. I was laying in bed, I had just woken up. Tyler rolled over and put his hand on my belly. She went crazy, she was still too small for him to feel but I could feel her fluttery kicks. She was showing her Daddy some love. With tears streaming down my face, I held his hand where it was, I was in love with my little family.
At this point, Tyler was working two jobs, he left at eight in the morning and didn’t return home until after ten at night. He was working so hard to support us, I was sitting at home, sick as ever, grieving for a child we’d not yet lost. I’m not sure if this was his way of grieving, keeping so busy that he didn’t have time to be sad.
We would have just moments a day together, enough to hold each other and try to tell one another how we feel. I was also trying to keep busy, making his lunch for the next day and making him a dinner that he would eat when he came home. I didn’t know what to do with myself, I didn’t want to go out, I didn’t want to stay home. I spent many long afternoons with our pup at the river, watching the water and tossing rocks. Nixon nudging my arm and tugging me into the the cool water.
Soon, though, Tyler left his second job. He was always exhausted and he knew I needed him. Also, he had made the decision to enlist in the Navy a few months prior, right around the time we found out we were pregnant. He would be leaving about six weeks after our due date. He would be headed to Great Lakes, Illinois for nine weeks of basic training.
As soon as I started showing, I fell in love with this new body. I loved the way I looked. I was also feeling the baby move like crazy. She had hiccups all the time. Four or five times a day. I loved watching my belly move and bounce with her. I loved my big belly. I loved Tyler feeling her, his hands on my belly, he was so in love. I decided that I was going to enjoy this pregnancy.
And I really did. I so love being pregnant. I love watching my body grow and change to accommodate another life.
We made the decision to induce labor on my due date. There was barely any fluid and our doctor was just beginning to be concerned. Once again I found myself in a hospital bed with an IV dripping steadily. Contractions began and I started to realize how unprepared I was. Could I do this? Labor and birth a baby who would not come home with us?
I resolved to put those thoughts out of my head. I was in this. I fought for this baby. We were going to meet our baby and shower him or her in so much love. Seventy hours and many pokes, prods and tears later, I was making no progress. My body was failing me again. What am I supposed to do here? Please.
I requested a cesarean. I could not lay in that bed for another minute. It was torture. Our doctor agreed and suddenly there was a flurry of activity in our room. Nurses prepping and asking questions, and an anesthesiologist explaining what he would be doing. I wanted to be awake and aware.
Moments later I was being rolled down the hall, Tyler following close behind. He was asked to wait while they finished prepping me. Once in the OR, I was sat up on the bed and a needle was placed in my back. A nurse held my hands and told me to curl my toes as hard as I could to help with the pain. The next hours are a blur. I was on the table, the drape was up. Bright lights hurting my eyes, tugging, pressure. It’s a girl. No cries, no new baby sounds.
The room is heavy. I just want my baby. My daughter. Please. She’s in Tyler’s arms next to my head. She’s struggling to take to a breath. I talk to her and she relaxes.
Sweet baby. Thank you for fighting to meet us. You are so beautiful. We love you. It’s OK to go home.
The next hour passes too quickly. My sweet Ryan Louise is given so much love in her short life. He heart beats for about an hour before she passes peaceful in her mama’s arms. We pray over her and our families leave to give us the privacy to say goodbye.
Going home was the strangest experience. I felt lighter knowing that my child was not in pain, she was home and safe, and we’d see her again someday. I missed her with every part of myself but I couldn’t allow myself to sink back into the sadness; I had to move forward. For Ryan. I had to get up, get dressed, and live. For her. I couldn’t waste the life I had been given.
Tyler left for basic training six weeks after Ryan was born and I was completely unprepared for the loneliness I felt without him. We were able to call occasionally, we wrote every day and I flew out to see him for Christmas. And then again a few weeks later to see him graduate.
After basic, he had A School in Texas for 3 months and I decided to get an apartment so I could be close to him. At this point I was six months postpartum and I missed being pregnant. We talked and agreed that our family felt incomplete. We decided to begin trying to conceive and were lucky enough to get pregnant on my first cycle.
We were scared but prayed and leaned on each other.
About a month later, Tyler was headed to Mississippi for more school and I was headed home. I visited our doctor and made an appointment for an in-depth ultrasound for a time Tyler could be there.
Walking into that office, my heart was so heavy. I hoped and prayed for a healthy baby. We needed good news. I wasn’t sure my heart could handle bad news.
We were shown into a small, dark room, and I lay down on the bed. The tech introduced herself and began the exam. I was on my back for about 45 minutes when I started feeling dizzy. I turned on my side and the tech excused herself to grab and doctor.
He came in with that look on his face. The look of sadness and apprehension. He had news he didn’t want to tell us. I already knew what he was going to say. But I needed to hear it. I’m so sorry.
No. Don’t be sorry. Just tell me. Say the words no one wants to say. I need to hear them.
The baby had the same condition that had taken Ryan from us just a few months earlier. I excused myself. I needed water. My head was spinning. Tyler, being the man he is, followed me into the restroom and caught me as I lost my legs. They crumbled from beneath me and I couldn’t stand. The ground dropped from under my feet again and I didn’t know what to do. Except carry this baby. That was the one thing we never questioned.
When I was about 20 weeks pregnant, Tyler got orders to Southern California. Over a thousand miles from home, from family, from our doctor. Pregnant with a baby that would not live to come home from the hospital. What am I even supposed to do with this? I was at a complete loss in a new place with no support system and no plan.
As our due date approached, I began to panic. I had no doctor. I ended up visiting a few but I was unhappy with them. So, I called the doctor who’d delivered Ryan and asked if he would perform a repeat cesarean. I was 100% certain that I could not handle laboring again. He said he would and we scheduled the day, November 15.
We drive the long ride home at 39+3 weeks pregnant and miserable.
I knew the routine this time. Change, wheel in, spinal, drape, husband. Tugging. Pressure. It’s a girl. No cries.
Emma Grace was so different from her sister. She was small, delicate. Tyler brought her to me. She grabbed my finger with that herculean newborn grib. She looked in my eyes as I spoke to her. She struggled to take a breath and then she was gone. My sweet Emma was gone before I had a chance to hold her in my arms.
I have no memories of the next 18 hours. Zero. It’s blank. Snippets sometimes pop up, holding her, dressing her, kissing her forehead and memorizing her face.
Going home was harder this time. I kept waking up looking for her. For a long time I woke up many times a night searching for my baby.
I was just 10 days postpartum when we had to make the drive home. I think I slept for most of the 26 hours.
At this point we’d lost 2 babies and it was pretty certain we were both carriers of the Meckel Gruber gene. We decided that our hearts couldn’t handle another pregnancy, the anxiety, the fear. We talked about adoption, IVF, the possibility of being childless.
We lived our lives. We made friends. We went out out. And put having a baby on the back burner. Tyler deployed to Afghanistan and came home safely. That was something to be thankful for. We had each other.
We were gearing up for another deployment in June 2014, two and a half years after losing Emma. My periods were weird and it wasn’t uncommon for me to be a week late. Sometimes I took pregnancy tests to set my mind at ease. They were always negative. Always. Except this one.
I panicked. Tyler was deploying in a few weeks. I didn’t want to do this alone. I locked myself in our bathroom for over an hour. How did this even happen?
Tyler came to see if I was OK and I couldn’t talk. I just handed him the test. He hugged me and told me every was going to be ok. That things happen for for a reason. But I wasn’t sure I was ready to accept that. I had always been a Christian, an active member of youth group, church and vacation bible school teacher. In the last five years, I’d pulled away from faith, wondering how I could believe in a God that had taken my children from me and put my family through unimaginable pain. I was trying so hard to reconcile those feelings and wanted to feel a part of something bigger. And so we prayed. It was the only thing we could do. There was already a baby growing inside me and the only one who had any say in what was going to happen was God.
And so we prayed. And prayed. And just for good measure, prayed a little more. I had a constant stream in my head. “Lord, please forgive me for being so angry with you. Please let this baby grow and be healthy.” Over and over and over.
We found a doctor based on the recommendations of several acquaintances and she referred us to a perinatologist a few towns over.
We met with him when I was about 14 weeks and at that point everything looked ok. We were relieved but nervous to completely believe him.
Tyler deployed a few days later and I was on my own. Six weeks later I headed back for another ultrasound. At 20 weeks, the baby still looked healthy and we were told we were having a boy! We had never been able to see gender before due to the lack of fluid not giving a clear picture this far along.
At 28 weeks, we were scheduled for one more scan. “This time,” I told myself, “I’ll believe him if he tells me our baby is healthy. He should be able to tell at this point.” The wand touched my belly and an image jumped to the screen. There he was, button nose, ten fingers, ten toes.
I was more than 30 weeks before I allowed myself to start buying baby things. Even then, it was 2 or 3 newborn onesies, a small package of diapers and a baby blanket with the name we’d chosen printed on it.
Tyler’s homecoming marked 38 weeks. I had never been happier to see him! Finally someone to run out for midnight tacos with!
My mom flew in at 38+4 and was surprised at how little we had accumulated for the babe. We didn’t even have a car seat. Because I was completely unconvinced that we would be bringing a baby home. Loss will do that to you.
We were scheduled for a repeat cesarean at 39 weeks, February 23. We decided to go this route for two reasons. One: if the baby did end up having MGS, I didn’t want to labor for hours or days to lose him. Two: if he was healthy I didn’t want to risk a VBA2C and put him in danger.
Being wheeled into the operating room was surreal. I’d done this before. The nurses thought my tears were happy, and nervous. They didn’t understand.
Numb. Tugging. Nauseous. It’s a boy.
Crying. Wait. He’s crying? He’s crying!
We had never heard that sound. I need him. Where is he. Can I see him?
Tyler brought him over and laid him on chest. His eyes were open. He was breathing. He was already searching for my breast. He latched all on his own and nursed while I was being stitched.
It was so surreal. There was no butterfly on the door. There were only happy tears. River McClure was born at 6lbs 15 ounces and 20 inched long. He was and is perfect in every sense. He never left my chest for our whole hospital stay. We slept, he nursed and we were in complete bliss.
The day came to take him home and I absolutely could not believe they were allowing us to take this tiny, perfect human home.
He is our perfect rainbow and the missing piece of our family. Today we are a household of three and a family of five. My body has grown three babies and feeds one. We tell River about his sisters daily and strongly believe he has two beautiful guardian angels watching over him.
When we first got the news about Ryan, I was so angry at God. We were good people, we went to church, why would He do this to us? I did go through a short period of thinking that it was a test of my faith, but ultimately, I was just angry. I didn’t pray, I didn’t talk to God for a long time. Before this, prayer was a huge comfort to me. My brother and I had a hard childhood and God was there for us throughout all of it. So being without that comfort, probably made things even harder. I am so happy to have repaired my relationship with God and to feel His hands on my family.
The big question that stuck in the back of my mind, that I didn’t really want to acknowledge was, “Is this part of a bigger plan? Did God have big plans for us? Plans that included heartbreak and struggle?”
We can see now that River was part of the big plan. He may not have been born if we hadn’t lost Ryan and Emma. We love them so much and miss them every single day and we have accepted that they needed to go home sooner than we would have liked.
I also really believe that these losses happened to us so that we can speak out about infant loss and help other families going through this impossible situation.
There is absolutely nothing that can be said to a family losing a child that will offer any comfort or relief from the pain. The only words those parents should hear are these: “I am here for you. No matter what you decide, I will be here loving you and your sweet baby. Do you want to talk/scream/cry/laugh? I’m here to listen and help however I can.”
There is no answer that fits every situation. I know a lot of families that have received a fatal diagnosis during pregnancy and they’ve all made different decisions for their family. Carrying to term is not for everyone, but it was the best solution to an impossible situation for my family.
image by Esther Edith