What it Was Like to Lose My Baby in Japan: A Reference for Those Who Have Experienced a Loss or Knows Somebody Who Has
I lost my baby 3 months ago. The emotions running through my mind and body are still much more intense than I ever thought could be. I have spent these past few months trying to find ways to control those emotions. I realized that one way to help make sense of what I was feeling was to read about other people’s experiences. I needed to know that I was not alone. Unfortunately, but understandably, not many people want to share their experiences in much detail. This is why I would like to share my story. My experience comes from being pregnant in Japan. I don't know how hospitals in the West handle these situations, or if there is even some sort of training or standard, but thinking back on it, I am rather impressed with the way this Japanese hospital cared for me. If you’ve lost a baby, whether through stillbirth, neonatal complications, or even a miscarriage, I hope that you can find something here to assure you that what you’re feeling is normal. And if you haven’t lost a baby but know someone who does, or if you are a healthcare professional in the field, this may be a useful read to help you understand what the parents might be going through, which may lead to better communication and provision of comfort.
In The Beginning
My pregnancy was so normal and smooth at first. I had all the standard symptoms; morning sickness, cravings and aversions to food, heightened sense of smell, fatigue, and the list goes on. At every appointment the doctor told me that things were progressing well and that she had no concerns. I was avidly reading books on the stages of pregnancy and what to expect in each one. I had found out that I was having a boy. He was very active and I could feel him kicking around in my belly. What a strange but wonderful feeling that is. Each kick reminded me that my body was actually making and nurturing a human being right inside of me.
The pregnancy was going so well until one night it felt like something was pressing against my bladder. Then, while sitting on the toilet, a gush of blood came out. At that moment I already thought I had lost my baby, but I was trying to stay hopeful until the doctor got a chance to tell me what was happening. I became more hopeful because ‘things like this don’t happen to me’. But this time was different. The first thing I heard the doctor say as he performed an ultrasound was “kore wa mazui” (Japanese for “this is bad”). He told me I needed to have my baby taken out. Frightened as ever, but still hoping he would be fine, I started to take deep breaths in attempts to relax my body, somehow thinking it would be good for my baby.
It took a long time for the hospital to get things prepared and I remember wishing they’d do it sooner so that the neonatal specialist could start making sure my baby was okay. The cesarean section went fine, and I was able to see my son for half a second before he was whisked away to the NICU (Newborn Intensive Care Unit) table. I could see the doctors working on him and that comforted me because I knew that if he was left inside of me he would not have had a chance.
The First News
It occurred to me only after my husband mentioned it, that this was it, I had given birth. It was 3 months early, but I had given birth and my son’s birthday had been set. Instead of the happiness and blissfulness that one usually feels after giving birth, all I could do was wonder and worry if my little boy was going to be okay. Again, hopefulness stemmed from the thought that things always turn out fine for me.
My husband had already been able to go to the NICU and showed me pictures of our son. He was so small and precious. The nurses would come by to do a milk breast massage (quite painful) and collect the milk in a special syringe. I was happy that one nurse told me I had lots of milk. It gave me comfort knowing that I was able to do something for my baby. They also gave me a small cloth to put on the skin of my chest. This, I was told, was going to be given to my son so that he could have my scent next to him.
Eventually, the nurses wheeled me over to see him for the first time. He wasn’t as tiny as I had imagined. My motherly instincts immediately kicked in; I wanted to hold him, not merely look through the incubator glass. His skin was patchy with some deep red splotches but I just thought, those will go away, and even if they didn’t he’s still perfect to me. He began to move his arms and it hit me again, I actually gave birth to this little guy. We thought of a name that day, just in case anything were to happen to him, we wanted him to hear his own name.
I had no visitors because my family is living halfway across the world, and this happened all so suddenly. I was able to video chat with my parents, which I know was really hard for them, to be so far away from me. My mother just wanted to come and give me a hug. I wasn’t in a private room so our conversations were kept short. Luckily I had my best friend on instant messaging and she kept me from falling apart that night after my husband had to leave (it was hospital policy to not allow overnight visitors).
The Awful News
It was only the next day that the nurses took me and my husband to a private room to talk. At this point I already knew that they had something serious to tell us. First they let us see our baby, and by the doctor’s account of what happened during the night, I already knew his chances of surviving were slim (his blood pressure remained low, and he had a brain hemorrhage during the night). I was crying with this realization and I didn’t want to leave his side. I didn't want to hear what the doctor had to say in the private room, but we had to go back there. There were 2 doctors and 2 nurses in the room. One of the doctors showed us a print out (thankfully with an English translation) of the treatments they had given him and explanations of any changes in his condition. Because the doctor was using Japanese medical terms that I didn't understand, I shut out the noises and was reading the English. It was such a difficult read, with my emotions and thoughts mixing in a storm inside my head. I was trying not to interrupt the talking with my crying, but the tears and sniffles were just unstoppable. My fantasy where my son would make it through, was gone. Although I had been a pharmacist in my home country, and understood the medical side of things, I was still glad that the doctors had given their professional recommendation of ceasing treatment. My husband signed the consent form first, and then, with a trembling hand, I too signed.
The staff left the room to give us privacy and I cried my heart out, not knowing what to think; should I be relieved because now we knew the outcome and because our baby would have suffered if he continued receiving treatment, should I try to be strong or should I let my emotions take over, would it hit me even harder later? (I may have been in some denial). My husband is not the type to cry much, so after I had calmed down, we were sitting in silence. My thoughts turned towards my husband, wondering what he was thinking and how his mind was processing the events.
Once the catheter was taken out of me, the hospital allowed me to visit our baby in the NICU as often as we liked. Although I knew that it wasn’t really essential for him to be getting my milk, as he was receiving everything through a tube, I still felt the urge to extract and fill up as much of the milk syringe as I could (the nurse had shown me how to do this). With the syringe and another mama-scented cloth in hand, we went to the NICU. The nurse used a small stick to dip in the milk and touch it to my son’s mouth. Even though I felt this was a symbolic gesture only, it still touched me to see my milk being fed to him. The cloth was placed over his forehead to keep him warm. We were allowed to stick our hands in the incubator and touch his warm and soft skin. I really hoped he knew we, his parents, were there. I was trying not to cry because I didn’t want the tears to cloud my vision of him. I wanted to remember every part of his body. The hospital let us take pictures with a digital camera only (thankfully they allowed the first few to be taken with a cell phone), so my husband had searched for and brought it the following day. I had to capture something from his short life. I wasn’t thinking about anything else but my baby, I just wanted to stay there, whispering his name and telling him we loved him. We learned that come midnight, he was not going to be receiving medications anymore.
I’m thankful that the hospital offered me a private room after their meeting with us. I didn’t have to been in a room with other women, hearing their perky voices talk about their pregnancies, babies, and birth, and I didn’t have to hear the pregnant woman in the next bed over listening to her baby’s heartbeat on the doppler machine. Because I was in a private room, the nurses let my husband stay with me all night. I’m so glad he was with me because that night, one of the nurses came to say it was time.
Again, my tears started to uncontrollably flow as we headed toward the NICU. I remember thinking, ‘this is the last time I’ll ever see our baby, I have remember it’. I wanted none of this to be true, but I had to force myself to let life take its course. My heart was beating faster because I didn’t know how to handle myself and the painful emotions. I’m pretty sure I wasn’t breathing much. There he was, this time lying motionless, still hooked up to beeping machines. We touched his warm body once more in the incubator. I didn’t know what was going to happen, but the nurses finally said that I could have him in my arms. I sat down with my husband by my side, and the nurse wrapped our baby in a towel and put him in my arms. It was the first time I got to hold him. I had wanted to do that ever so badly since the moment I saw him, and it felt nice to cradle him, like I could tell him how much I loved him just by holding him close. My tears and cries came out with even more force. My husband also got a chance to hold him and that was the first time I ever saw him wipe tears from his eyes.
I don’t exactly know when the life slipped from my son, but I hope it was after I told him that mommy and daddy would love him forever. The nurses in the room were with us the whole time, one stroking my shoulder. They began to take off all the tubes and tape while he was still in my arms. They opened and checked his eyes and recorded time of death. Next, they prepared a small bath. With my husband holding our son, and with the nurses guidance, I used a cloth to put warm water over and cleanse his whole body. My husband then dried him off, put diapers on him and dressed him in a cute blue Japanese happi (a traditional robe). It felt ceremonial, almost like I was sending my boy off with memories of his parents bathing him and of our touch.
We were then taken to a small, office-like room with a comfortable couch. As we sat down, the nurse placed my baby, wrapped in a thick, white towel, in my arms. They left the 3 of us alone to spend some time together. I was thinking, he looks so cozy, and alive, as if just sleeping. He even felt warm to the touch. But I had to remind myself that he wasn’t breathing and that I needed to cherish this moment, remember every feeling, everything about my son, every smell, because it was the only moment like this we’d have together. We had the camera with us now, and began to take some shots. It may seem odd to some readers that we took photos of a lifeless body, but I knew I needed those pictures to help me remember the details. After all, he never had a first birthday, a first-step, a first-day at school, all those opportunities that mothers and fathers usually have to take photos. I didn’t want this time together to end. It felt good to have him in my arms, and to see his father holding him too, caressing his head. Even though he was with us no more, it felt as if we were able to bond with him. We sat there, holding him as long as we could until eventually the nurses came in to take him away. I got into my wheelchair, and as the nurse asked if we were okay to go back to our room, I found myself reaching out to hold my son again. I think she knew I’d want to cradle him for just a few more seconds.
The Week In The Hospital
In Japan, it is standard whether you’ve had a cesarean section or a vaginal birth, to stay in the hospital for a full week. This gave me lots of time to think in silence. I was feeling all sorts of emotions aside from the expected sadness. I felt angry at myself for not having eaten more or for not having gained more weight, for continuing to work while I was pregnant and even for sitting on the toilet just when the nightmare started. I am normally not the type to fuss a lot over things that I can’t change. Usually I am able to tell myself there’s nothing I can do, and easily let what is bothering me go. This time, my mind could not let the guilt slide. I kept thinking, what if I had eaten better, what if I hade made it to the shrine to pray for a smooth birth and to my doctor’s appointment that was scheduled for the very next morning (how painfully ironic). All of the what-ifs and guilt were what kept me from sleeping the whole week.
In addition to that, keeping me awake were the cries of babies when their mom’s would take them out of the nursery and wheel their little beds around the hospital corridors to quiet them down. I longed to be able to do that with my baby. Unfortunately, my time in the corridor was spent walking to the bathroom. I would hear all kinds of cries, some sounding like alarms, some like the stray cat around my house, some that were cute and gentle, and some that sounded angry. I would lay in bed at night wondering how my baby’s cry would have been, like music to a mother’s ears, a cry for attention or food, the cute and gentle type? I will never know, and like many other unanswered questions, it bothered me to the point where I could not feel at peace.
I was surprised midway through my stay, when my husband requested for our baby to spend one night in our room. I hadn’t known that it was an option, but I was glad my husband was more attentive. That night turned out to be very special. My baby’s face had slightly changed and he was cold to the touch, but I didn’t care, I was just excited to actually be able to spend a night with my son by my side. I was able to sing the lullaby I dreamed of singing to him in my pregnant days. I was able to tell him the things I needed to say. My husband and I even ate some dessert fruit cups that night with our son in the room, just like a normal family would do. I didn’t want to go to sleep that night, but we did eventually turn off the lights and lay down in the bed beside our baby. In the middle of the night some nurses came to replace the ice packs he was lying on, but we didn’t want to remember him on ice, so we let them take him back to the ‘nursery' for the deceased. It had been a special night, just the three of us together, our family time.
We decided to wait until my last day at the hospital to have him cremated. I wanted to feel like we were together, in the same place, during my whole stay. With one of the nurses, and my son's NICU doctor present in a large chamber in the basement of the hospital, I held my son for one last time before putting him into a little white cardboard box. My husband had brought some things from home and some goodies to put in the box with him. We also added some pictures with a personal written message, and the mommy-scented cloth from the NICU, to send off with him. The nurses had very kindly folded some origami cranes for him as well. Suddenly about a dozen staff members entered the chamber, the doctor that performed the c-section, and the NICU doctors and nurses that knew our son were all there. They had come to pay their respects to him one by one. They even followed us upstairs and outside to the taxi stand, and waved goodbye as I craddled the box and we rode to the cremation site.
I remember feeling the warmth of the sun shining through the window of the building on that winter day. It felt somehow comforting. We took part in the traditional Japanese ritual of using long chopsticks to transfer the bones that remained after the cremation in to an urn. I'm not sure the exact meaning of this but I know it probably gave me some closure to see the ashes and the bones that we were to take home. We had been told that often there is nothing remaining when such a small body is cremated, so I was glad we had something to bring home.
The Following Weeks And Months: My Feelings And Thoughts
The day I got home, I thought, I can now put this sadness behind me, and start the road to healing. Boy was I wrong. My sadness became even more profound. I never would have thought that I could feel such a deep sadness in my life. I was not the same person and never will be again. It was hard to sit in silence because I would overthink, feel angry at myself, cry, and be in so much emotional pain. It was hard to have the TV on because I would see other people laughing and enjoying life while I couldn’t. The entertainers appeared as if they had never had such a sad thing happen to them before. I hadn't noticed it before, but there are so many babies appearing in diaper, skin care, insurance, and all kinds of commercials. The sports news would show people crying because they didn’t win a match or competition (the Japanese aren't afraid to get emotional on national TV) and I would think, how can they cry about something so trivial?
Even getting out of the house was hard. Any sight of babies or families with kids triggered me, like a stab to the heart. I would try really hard to hold back my tears but broke down crying more often than not. The sound of a baby’s cry or even a mother reading a book to her son at the table next to me, caused my jealousy to heighten and the tears to pour out. I was envious of everyone around me who were seemingly living their lives without ever experiencing the sadness and emptiness that I was feeling.
For the first couple of months I couldn’t go grocery shopping or enter any of the restaurants or stores that I had the routine of visiting while I was pregnant. For one, some of the shop employees recognized me as a regular customer and because I had been showing, I feared they would ask me how the pregnancy was going. I didn’t want to have to tell them the sad news and break down crying in public. Secondly, just being in those stores was a reminder of my pregnant days and the old me.
At one point I was obsessed with the medical information on the internet. The doctor who had done my cesarean told me I had a low lying placenta and that it had been bleeding. Then I was searching the internet like crazy for information about placenta previa and placental abruption. I didn’t know exactly what I was looking for, something to blame, or something to tell me there was nothing I could do, anything to give me comfort. It may have eased my mind a bit to understand these conditions in more detail, but on the other hand, it had a part in adding to my list of what-ifs and anxiety. If some of the causes were intercourse, constipation, and lack of proper nutrients, it was excruciating for me to feel that it was the sex we had two nights before, or the straining from the constipation the night it happened, or my minimal weight gain throughout my pregnancy, that were the culprits. Why had I done those things? I even regretted having a thought that entered my head at one time; “this seems so unreal, I can’t actually be having a baby”. I also once said later on in my pregnancy when I was feeling exhausted, “I can’t wait for this baby to come out”. What if I hadn’t said or thought those things?
I also experienced some anxiety attacks; not being able to breathe, feeling very restless, like the room was so hot and stuffy, and not being able to concentrate on anything but those symptoms slowly escalating. Every night I’d be laying awake in bed, sleepless, thinking about the same things over and over again. Every day I felt like my heart had sunk right into my stomach and had become a constant knot in there that could not be unravelled. I couldn’t pinpoint exactly what thoughts made all the symptoms appear. It was partly the guilt, partly the reliving of events, and partly thinking about the future. I had realized that I was not only saying goodbye to my baby, but also to all the plans and dreams I had for the future with him. I was supposed to be pregnant and getting bigger each week. And what made things seem slightly harder was that one of my good friends was pregnant at the same time. She would tell me how tired and cranky she felt because of the baby in her belly. I would think, “I'd give anything to feel that tiredness and crankiness if it meant I were still pregnant”. Perhaps she was just trying to make being pregnant sound like a burden, and I know that she was just telling the truth about how she was feeling, but it made me wish even harder that I was in the same position as her. I was plain jealous.
I had planned to stop working at the 7 month mark to rest my pregnant body before giving birth and to take care of the baby afterwards. Because of this, I made the decision while in the hospital that I would quit my job as planned. I couldn’t go back to a place that reminded me of my pregnancy and that I was planning to not return to in the first place (I was only part-time, so would receive no maternity leave either). Perhaps I should have waited a bit before making this rash decision because it also raised anxiety about the future as now I had no job. When would I be ready to go back into the world, and what kind of job should I or could I do?
Thoughts about the future also included worries about whether or not I would ever have a baby. I was relieved when my husband told me that he wants to keep trying, but given my track record I don’t know how easily I’ll be able to get pregnant again, or if the pregnancy will go to full term, or even if the baby will be a healthy one. Of course I am hoping for the best, but my ticking clock makes me worry even more (I am over 35). I hate that due to the caesarean section I have to wait a whole year to start trying again. I’d also love for my parents to meet their grandkids in the future and I worry that this baby was the only chance. My parents are healthy now (my father had surgery to remove his bladder due to cancer and has now recovered), but this whole experience makes life seem so fragile that it has made me worry about the health of all those around me.
The hospital had given me a list of support groups, but they were all in Japanese. I felt I needed something in English (it is difficult being half fluent and always need a dictionary on hand) to be able to express myself effectively. I looked for an English support group but could not find one. Therefore, I spent a lot of my time searching the web for people with similar experiences to me. At first I was looking for those who had placental problems, but when I found that information hard to find, I got discouraged and felt alone. When I started broadening my internet searches, I realized that there were many people who wrote about losing a baby, and that people with other types of losses such as stillbirth and late-term miscarriages had similar feelings to me. I found it helpful to read those accounts of what happened and how they were feeling. But I wanted to know more details. Everytime I read something that matched exactly what I had been thinking or experiencing, it made me feel less alone. That is part of the reason I decided to write this article with so many details; maybe somebody will read this and hopefully will find something to help them on the road to healing.
Things I Have Found To Be Useful In My Healing Journey (so far)
I know that it will take time, and that I have to grieve the way my mind and body can handle and stay most at ease. Although only a few months have passed and I still have trouble sleeping, and still have thoughts that cause anxiety, I feel there are some things that are really helping me along the way.
- Writing: the first thing I felt compelled to do when I got home from the hospital was to write a journal of all the events during my pregnancy, including the trips we took because they were trips taken with my baby inside me. I wrote about all of my feelings, extreme happiness to rock-bottom sadness from the time I found out I was pregnant to the days of darkness. It really helped to get out all the feelings that were occupying my brain. Instead of going around in circles and feeling all of the emotions clouding together, I wrote them down and could think about each one individually. It gave me a chance to step back, and see that some of my worries and anxieties were not justified. I also wrote messages to my son apologizing for things I thought I should have done better, and to let him know how much love his mom and dad will be sending him everyday until we die.
In addition to the diary, I started writing articles about pregnancy with information that I wish I had known while I was pregnant and after I become a bereaved mother. Publishing these articles has helped me get some heavy weights off my shoulders and if just one person finds something helpful, then it will bring me one step higher in my journey.
- A list of things to tell myself: Throughout the whole ordeal I realized that there are some things that I should be telling myself when I start to feel anxious. For example, ‘some things just happen, for no reason at all’. People would be telling me that everything happens for a reason. I didn’t want to believe this though. I didn’t want to think it was something bad I did, or fate and that it was bound to happen from the start. I just wanted to feel that I had no control over it and that it just happened, there is no such thing as good luck or back luck. I would read online about people who experienced a neonatal loss and came to peace with it after they found that they became a better person or made something good come out of the situation. This made me start to put pressure on myself to do the same. But that just caused more anxiety and also meant looking all over again for a reason for my baby’s death. I didn’t want to think that if I became a better person it would make my loss have meaning. I would rather return to the unchanged me, all faults included, if it meant that I’d have my child with me. I tell myself there is no pressure, no reason.
I found that I had trouble focusing on anything I was doing, so one piece of advice to myself was simply to concentrate on what I was doing at that moment. I also need to remind myself sometimes that people have regular pregnancies and healthy babies after an event like this, so I can too.
I have a long list of things to remind myself, and I keep adding and changing things as I go along.
- Walking, keeping a good posture and breathing: it sounds too simple, but it really helps ease my anxiety and calm my thoughts. Sometimes I end up crying during my quiet walks, but it feels good to get that cry out in the midst of the fresh air and the warmth of the sun who's rays make me feel that my son is reaching down to touch me. A good posture not only helps me breathe, but has a higher chance of making me think positive thoughts than does slouching. The deep breathing I do not only has a calming effect but it’s something I feel I should’ve done more while pregnant.
- Eating lots: It goes without saying that good nutrition is essential for a healthy body. I wanted to recover well from my surgery, so I tried to eat a good amount of healthy food (and tried not to do any emotional eating). Although sometimes I just didn’t have an appetite I found that eating at regular times gave me the strength to try and think positively. I have gained at least 15 lbs since before I was pregnant, but I needed to feel like I was going to heal and the first place to start was my body (keeping within the healthy weight range). In addition to that, like deep breathing, eating lots was something I feel I should have done more while pregnant, so for some reason, it gives me some comfort to do it now. Perhaps I am trying to give myself some hope for when we start trying again.
- Meditation: I had doubts about this but it’s so easy to find and download free apps to guide your meditation. I found that at first it was hard to sit there in silence with my eyes closed, and the sound of the app's voice instructing me what to do. I didn't like the voice because it was speaking to me as if nothing happened and I was living a normal life. The app seemed to have the opposite effect and I would end up crying and feeling a bit more anxious, the same as when I closed my eyes to sleep at night. However, I forced myself to listen to even just a few minutes each day, and I eventually found that the deep breathing, silence and slowing down helped me feel calm for rest of the day. I’m not very good at meditation as I find my mind wanders more than it probably should, and I am not very good at being aware of being in the present, or being mindful, but I feel that despite all that, it is having a good effect.
- Talking to my husband: As I mentioned earlier, my husband doesn’t show or talk about his feelings very much. However there have been the few times, when he found me awake crying in bed, or looking as if I were about to cry, and he asked me “what are you thinking?”. It was healing to tell him because I know he was the only one that was there through it all with me. He understands that I have an even deeper bond with our son since I felt him kick and had him inside of me for 25 weeks.
It was a small gesture but it meant something to me; before I got home from the hospital my husband had hid my pregnancy books away in the back of the closet. I thought he did it just for me, but when I asked him about it, he said he did it for himself too. He didn't want to see those books and be reminded of me reading them when my pregnancy was going well. It meant something to me because it let me know that it wasn't only me who was bothered by the small things.
When I told him of how the sound of an ambulance reminds me of that horrible night, he told me of the things that give him flashbacks. When I told him of my guilt, he told me of some of the things he felt guilty for. It surprised me that although he had different thoughts or triggers, our feelings were essentially the same. Talking about it really worked to strengthen our relationship. It even feels different, in a better way, to hug my husband now.
- Finding different interests to accommodate the new me: before the whole ordeal, I was often on the internet looking for new places to eat, and new things to try at different restaurants on my days off or during lunch breaks. When I got home from the hospital I found I had no interest in that anymore. Not only was I recovering and not physically able to go out to eat, I just didn’t get excited anymore about restaurant food and I didn’t see the point in going out of my way to have a meal. Instead, I started putting more time and effort into cooking. Not only is it more cost effective, it is food that I can share with my husband. Although I still crave things that I can’t make very easily or well at home, I find it keeps me busy searching for new recipes and flavours.
- Having something to hold; it might sound small, insignificant and slightly embarrassing, but I found that holding and hugging a cute, good-sized plushy stuffed toy calms me down and helps with my longing to hug my baby.
- Getting involved in a support group: I could not find a support group in English in the city I live in, so I turned to the internet. I found a private group on Facebook for bereaved mothers of babies who were in the NICU. The ability to post a message, a thought, or question and get responses rather quickly was just what I needed in lieu of attending a support group meeting. My first post about the story of my baby received many responses, all coming from mothers who had also lost their babies. Although I had never met them before, I was touched by their comments because they were coming from someone who understands. A lot of them called me Mama in their messages and it really hit me that yes, even though I had nothing to show for it, I was still a Mom. That thought lifted my spirits because just acknowledging that I am a mother and my husband is a father, gives my son some everlasting existence.
When most of my friends and family talk to me now, it is almost as if nothing happened, as if they think I’ve moved on or should be getting on with my life. To me it feels as if they don’t realize that this is something that is going to be with me forever. This is why it is nice to talk to or to read people’s messages in the support group, because even those who have been in it for 5 or 6 years still understand the feeling of not being able to let go, of being forced to live as a different person and in a “new normal” as they call it. They know the importance of acknowledging that our babies were there and will be with us for the rest of our lives.
- Making memorials: Soon after arriving home from the hospital, we cleared a shelf in the living room and put our son’s ashes there along with his health record book and his belly button that the hospital gave to us in a little box (it’s called the heso in Japanese which translates to belly button, but it’s actually the umbilical cord stump). We also put a stuffed toy and some chocolates there for him.
Not long after losing my son, the Christmas holidays came. It was the hardest thing to constantly hear Christmas music on TV or out in the stores. It kept reminding me that the holidays were just going to be the 2 of us this year instead of the 3 of us (pregnant me and husband). I couldn’t bring myself to put up Christmas decorations around the house. Eventually I thought that the only way to get through the holidays were to somehow include my son in them. I went to the craft section of a 100 yen store and found the perfect thing. It was a little stocking to hang in between mine and my husband's. To make it more personal, I cut out the letters of my son’s name from sheets of red and green felt and sewed them to his stocking. My husband also joined in and bought a picture frame and some toys to put on his shelf for Christmas.
As part of a Christmas present to me, my husband bought a scrapbooking photo album. I spent the next few weeks carefully designing each page with the 30 or so photos we had of our baby including the ultrasounds. It was a nice project for me because instead of feeling numb I could think of my son and use my creativity at the same time. And now we have a book that we can look at whenever we want to reminisce and feel closer to him.
What We Can Learn From the Hospitals In Japan (How They Helped My Healing)
I was not aware of it at the time, but after reading other people’s experiences at hospitals in the West, it made me really appreciate the staff at the hospital I was in here in Japan. I was really touched and impressed for many reasons;
- They encouraged us to take photos: these photos are the only ones we’ll ever have of our son and although it was a painful time, I need those photos for whenever I am missing him and want to see his cute little face.
- The nurses gave my milk to my baby: whether he actually needed or not, it helped me notice my newfound motherly love toward him, and honored my need to be able to care for him.
- They let us see our son as often as we wanted to, both when he was in the NICU and after he had passed away: It was comforting to be able to tell my son face to face all the things I wanted him to hear, and even when looking at his lifeless body after he passed away, it felt as if I was still bonding with him. This bond is something I know I needed because if I didn’t have it, it would be something I'd wish for and cry over my entire life.
- They prepared a bath for our baby and let us hold him and be with him even after his heart had stopped beating: I know I will forever cherish these moments when I could care for him and hold him in my arms.
- They offered the option of having our baby in the hospital room overnight: (I think hospitals in the West allow the baby to be taken home, in some cases with a cooling system). Japanese hospitals make the mother stay one week after delivery, so during that week it was possible to do this, and I’m so glad I did. It was one more way for me to spend time with my baby and to feel closer to him.
- The doctors and nurses came to see how I was doing physically and mentally: I expected the staff to check up on the condition of the c-section incision and to make sure my health was in check, but I was surprised that the doctor that did my surgery, and a nurse who was in the room that night, both came a couple of times just to talk. They were happy to answer any questions I had about my son, and they wanted to know how I felt. They nurse told me everything about my baby when he was born, how his one leg was bent, how he seemed to be trying hard to breathe on his own and how he reacted well to the treatments of the NICU doctor. She also kept telling me that she could see how hard he was fighting in the NICU and how cute his face was once they took the tubes out. She said that he seemed comfortable and at peace. It was nice hearing these things from other people who had seen him because it made his life seem more appreciated. It let me know that other people cared about him, not just me and my husband. In addition, I didn't have to say anything, they both knew that I was having trouble sleeping. The nurse gave me a foot massage and aromatherapy to calm my nerves and the doctor offered to prescribe some sleeping pills. More than anything, the staff were there to listen and that was important to me. I needed to get some feelings out and just cry.
- The nurses called me okaasan, which is Japanese for mama or mom: It was nice to hear because that is in fact what I am, even now. I wasn’t supposed to be a mother, I am a mother.
- The staff came to pay their respects: It was really nice that the nurses had folded origami cranes for my son's cremation. And to have so many people who didn’t even know us, come to say goodbye to him was so reassuring; it wasn’t only me who accepted him as person and living being. This reminded me that I didn’t have to suppress my feelings, I had a good reason to cry and it was ok to feel the way I did even though he was only with us for 2 days. The same goes for having staff around us when we were told of the bad news and the night he passed away. It felt like he was being cared for by so many.
How My Friends and Family Helped My Healing
- Attempts to provide comfort: Most of my friends and family were not able to visit me, being that I am half-way across the world, but they let me know that they were here for me if I needed anything. At first it bugged me a little when many of them revealed for the first time that they had experienced miscarriages, or even compared my situation to that of losing parents. It was like they were saying they’ve gotten over it and went on with their lives and are fine now. I didn’t feel like this was something “to get over”. When a parent dies, you still have all the memories of times spent with them, but when a baby dies, there are endless memories you were supposed to have but didn't. Of course I want to eventually be able to have emotions of genuine happiness someday but I don’t necessarily want to put what happened in the back of my mind just because we didn't create years of memories together. I want to think about my son everyday, it’s just that I’d like to do it without breaking down and crying every time. Somehow I didn’t feel like I related to people's stories of miscarriages and other losses, and it made me feel even more alone. I was the only one I knew that carried so far, gave birth, and held my son as he took his last breath. However, I now appreciate that they were trying to be helpful and in reality, probably did experience some of the same feelings that I had or have.
- Their words: It comforted me to hear the words “be nice to yourself”. The pressure I felt to get better quickly and jump right back into the world would dissipate. I didn’t feel bad for sitting around all day at home, crying, and trying to be in touch with my needs, emotions and thoughts.
I felt the extra support when my friends would ask me even as the weeks and months went by, “how are you doing?”, “how have you been holding up?” or “are you sleeping ok?". They let me know that they were still thinking of my baby and me, and that they understood how hard it is. It isn’t something to be forgotten.
- Personal gifts: a couple of my friends sent me an engraved necklace and a cute angel ornament, both with my son’s name and birthdate. I have added them to the collection of things on the shelf with my son's ashes. I wear the necklace when I go out and feel like my son is with me all the time. These gifts let me know that he was thought of by others and not just labelled a tragedy.
It is a known fact that everybody has a different way of grieving, and you really do have to find your own way. My story was one from Japan, but regardless, people are people and emotions are emotions. Now that I’ve poured out so many details of my feelings and thoughts, I hope that you have found something, whether you have lost a baby yourself or know someone who did, to help find your path to healing, or to help in supporting someone who is searching for that path.
I never realized how hard the journey was going to be until I found myself still crying everyday and still thinking about it months later. I now accept that I will be grieving forever. I will not call it grieving though as I do not like that word; I tend to associate the word “grief” to profound sadness, crying and longing. Since I don’t want to be in that state forever, I prefer to think of it as profound thought, remembrance and an everlasting bond. I will still continue to think about my son, and find ways to keep him in existence. My little project now is to search for a pendant for my husband to wear and have our son’s name engraved on it. His name is Takuma by the way.
Since writing this article, six months have passed. I had some new thoughts and new advice come to mind and just had to write them down. For the perspective of losing a baby half a year down the road, please read the continuation of my journey, "A Read for Someone Who Has Lost an NICU Baby or Knows Somebody Who Has (Including the Healthcare Professional)".