In the Stillness of the Night

Posted on Posted in Induction/L&D, Stories, Trisomy 18 (Edward's syndrome)

By J.M.

In the stillness of the night
He was born in the stillness of the night, a gentle and quiet birth with dignity and a serene sense of peace in the air, and for that I am grateful.

My second husband and I had been trying for another baby for nearly eight years, including three rounds of IVF. Our marriage had reached the breaking point. Male Infertility, we were told. Three weeks before Christmas, Scott announced that we would separate, effective immediately. Within days, our house was put up for sale

I struggled to come to terms with the finality of losing the love of my life and starting again on my own. The following few weeks were ghastly as I tried to cope with my world falling apart. On Boxing Day Scott asked me to move out of the house as anger and bitterness took over, and it was just too hard to live under the same roof.

As things go, however, we did begin to speak more civilly within a couple of weeks, and for me the relief of simply at least being on speaking terms again somehow resulted in us getting into bed together one morning.

Our plans to divorce still carried on, and within a very short time we received an offer on the house. On the strength of this sale, I went ahead and bought a new home for myself and my two teenage boys from my first marriage. I chose a place near their school and sports ground, as I knew they would have to become more independent now that I was to be a single mom.

As the day of settlement for the sale of our home drew nearer, the boys and I returned to old house in order to start packing. Scott and I agreed that we could cope under the same roof for the short amount of time that was left together. The day that I moved back to the house, I stopped at the shops to get a few things. My period was nearly two weeks late, which I’d put down to stress, but just for peace of mind I purchased a home pregnancy test anyway. I had used them with great hope so many times over the course of our infertility struggles, but this time it was simply an elimination process.

When I took the test it turned positive mmediately! I thought my eyes were playing tricks on me. The irony. Our house was sold and we were 100% going our separate ways. How could I be pregnant? Why couldn’t it have happened earlier, before all the damage and rot had set in? When we were going through the years of IVF? It just wasn’t fair.

I knew that people, even Scott, would probably assume that I had deliberately gone out and gotten pregnant while I was moved out in order to trick him into staying with me. It just seemed like too much of a coincidence, especially when you looked at our fertility history.

I felt certain though that I should not have an abortion or have the baby on my own without telling Scott. That night I I broke the news to him. We agreed to have the doctor confirm my pregnancy before making any further plans.

With that confirmation in hand we began to reassess our plans for the future. Our whole world had changed again, just when we least expected it. Nothing could overshadow our joy in this pregnancy. Suddenly, the world seemed right again. We’d been through a baptism of fire and survived. Our joy and excitement went one step further when I had my first ultrasound and was diagnosed with twins. It seemed almost too much from all these years of nothing, to one baby and then to two!

We decided to make a fresh start our ourselves and our new babies by moving into my new house; there were too many ghosts in the old one. I even delighted in morning sickness with the knowledge that I was finally carrying our much wanted babies.

Sadly, the next ultrasound revealed that one of the twins had not made it. By now I was ten weeks pregnant. We were upset but took heart in the knowledge that the other twin was growing fast, had a healthy heartbeat and seemed to be doing well.

Around 17 weeks I expect to feel the baby move, just as I had with my two sons. By 18, 19 and even 20 weeks I still hadn’t felt much of anything except an occasional rolling sensation. Finally, on the advice of a friend, I took an unscheduled trip to my doctor and mentioned my concerns at not feeling any real movements yet. The doctor immediately sent me for my 20 week scan .

I waited three hours and was the last patient in the waiting room before the ultrasound section shut down for the day. I expressed my concerns about lack of fetal movement to the radiographer. To put my mind at rest she showed me the heartbeat right away. The rest of the scan seemed to take a very long time. I tried to make small talk but her mind was elsewhere. When she asked a colleague to assist her with the scan, I really began to worry. I was taken aback when she asked me to see my doctor the following day to get the results of the scan. In my other pregnancies I’d always gotten “healthy baby” feedback right at the scan.

I asked if she had some concerns, and she said that the baby did seem smaller than they would have expected at 20 weeks. Seeing my alarm, she blithely added, “But don’t lose any sleep over it tonight.”

Trying not to cry, I left the deserted office and went out into the now dark parking lot. I drove to Scott’s work where he was awaiting our scan results. Scott tried to calm me down, assuring me that I was overreacting and there was nothing to worry about. I convinced myself I was being silly and there was nothing to fear. After all, we had had all the tests recommended and everything had come up fine. If there were any problems, surely they would have been picked up long before this stage.

Ahead of my visit with my doctor the next day, I researched small for size gestation. The research alarmed me somewhat. One of my colleagues noticed what I was doing, and I briefly explained to her what had happened the previous evening. She was very quick to reassure me, and remind me of the extremely low odds of something being wrong.

That afternoon, Scott and picked up the scan results from the hospital. While we were waiting to see my doctor I took the report summary from the envelope and started to read it. Scott took it from me, but not before I had seen the words multiple anomalies. Those words have been burned onto my brain ever since. I started to quietly cry, knowing that all our happiness and joy was about to transform into a horrible nightmare.

Shortly, my GP called us in. Silently I held out the envelope, but she shook her head and said she had already read it. Her face alone gave her away. The sadness in her eyes as she said, “It’s not good news” told me that we were truly facing a devastating outcome. Stammering, I asked what was wrong. She said they thought our baby had Trisomy 18, and that this condition was very bad.

Scott and I drove home in silence while the nightmare we faced started to sink in.

We got home, and Scott went outside to the garden to play with the dog. I envied how easily he could distract himself from this. Inside my mind I was screaming.

The counselor from the hospital’s genetics department called. I was relieved to have someone get in touch with us so quickly, and she assumed responsibility for helping to organize us through the next few days. I was grateful for this complete stranger’s concern and how she listened patiently as I raved on. She asked to speak to Scott, and I said that it probably was not a good idea as he was very upset and crying out in the shed. I told her I wanted to end the pregnancy, that it no longer felt like there was a baby inside me, but an alien.

I told Scott my decision and outlined the probable course of events over the next few days, including further tests. Scott assured me that there was no way that I would have to go through labor and give birth, but that they would knock me out and do the procedure while I was unconscious.

That night seemed surreal. Scott lit a bonfire, and we all sat around it and cooked our tea on it. It seemed ridiculous that in the middle of our shock and disbelief, we could function like a normal family. As the night wore on, I started to feel frantic about needing to change our environment. I just wanted to clean everything, and make it different than before. I stripped the sheets off the bed and washed the floors in the bedroom. Somehow I just had to change the environment and this was the only way I could do it. I couldn’t explain why I felt compelled to sterilize everything I had touched. Throughout the night, a long, sleepless night, all I could think was that I just wanted to get this “alien” out of my body.

At the hospital the next day I was struck by the dreariness of the building, the tiny, cramped offices. In a private consultation room we met with the genetic counselor and a doctor. Meeting with these two professional women, it finally hit home for me that this was real and not just a bad dream. Flooded with pain and emotion, I began to sob.

They explained the problems our baby had. All indicators were for Trisomy 18. The preliminary ultrasound findings made this clear. The doctors did not try to sway us one way or the other, but gave a fairly realistic, and grim, outline of the baby’s circumstances should it survive birth. I asked what the procedure was for ending this pregnancy. They said it would be an induced labor abortion in the hospital. I felt hysterical and sobbed all over again. How on earth was I supposed to go through with childbirth to deliver a dead, deformed baby? I didn’t think I was strong enough to do it.

At nearly 20 weeks pregnant, I was at the border of a legal abortion cutoff. If I didn’t interrupt the pregnancy before the 20 week date, our case would have to be presented to a medical ethics board for permission to end the pregnancy.This was quite frustrating. On the one hand, we wanted to get this all over with as soon as possible. On the other hand, we felt strongly that we needed further testing to be absolutely certain of the diagnosis.

I immediately underwent amniocentesis test, something Scott and I had dismissed as unnecessary earlier in the pregnancy after the initial screening tests came back OK. Because of our infertility, we knew that the odds of having a miscarriage from the amnio were actually higher than the chance we’d had of conceiving. Ironically, this time I’d have much rather have had the amnio result in a miscarriage than undergo an induced labor abortion. If there had to be a miscarriage statistic for amnios, then better it happen to me than some other poor mother whose baby was perfectly fine.

We were told that the laboratory would do an urgent FISH test on specific chromosomes to confirm the Trisomy 18 diagnosis. However, full amnio results would not be complete for a couple of weeks. We decided that if the FISH results came back positive for Trisomy 18 we’d end the pregnancy as soon as possible. But if it was not Trisomy 18 we would await for the complete amnio results before making any further decisions.

Luckily, my teenage sons were with their dad that weekend. We barely saw them before they left to go off with him, and I was grateful that they didn’t have to witness our pain. We were in a state of numb shock, moving quietly around the house or huddling together on the couch. At one point, I found myself sitting in a separate chair, and quickly moved next to him. I needed to be able to touch him, and see him at all times. I didn’t even want him to leave me to go to the shops. I felt scared without him there.

We spent a lot of time that weekend researching Trisomy 18 on the internet. We also looked up the problems diagnosed in the initial ultrasound, trying to work out what they meant. It quickly became a minefield, where one medical term led to another, and then another. We were flooded with information and trying to make sense of the implications for our baby. We discussed the what ifs of having a disabled child, how we would cope and change our lives to manage. The only positive thing was our preoccupation with this research kept us from wallowing and crying all weekend.

The detachment I had felt for the baby when we first learned the news cracked into little pieces one night when Scott placed his hand on my tummy and asked if I still loved the baby. From that point on, I loved our baby even more than I had throughout the entire pregnancy. He was a tiny, helpless being who needed his Mum and Dad more than ever, and needed our protection and love as much as possible. From that point on, I deliberately slept facing Scott with our baby between us, so that he would know that he had his Mum and Dad on either side of him.

I was at home alone when the hospital rang to book me in for an induced labor abortion that afternoon. I panicked because we still didn’t have the FISH results confirming Trisomy 18.  I questioned the nurse about this. She seemed surprised that I didn’t know and said a doctor would call me. Shortly after this the doctor called to say our baby didn’t have Trisomy 18 after all.

Scott and I were relieved, but  knew that there was still something drastically wrong with our baby. An appointment was made for two weeks later to have further scans and see if there were any changes. It was a very long two weeks of research, and more research one medical term led to another, and our baby’s diagnosis included so many different problems.

I went back to work to try and pass the time until the next scan; finally the Friday came. I held it together until we walked through the doors into the scan room, and then the reality hit me all over again. Sobbing, I let them do the scan, and the head doctor made it clear very quickly that our little baby’s condition had actually gotten worse there was more fluid in the brain and his lungs were growing too big for his tiny body. He was only in the third percentile for his size, and there were many other problems as well.

We knew there was nothing further anyone could do, and had to accept that our little bub would be born sleeping in the next few days. Arrangements were made for our case to be put to the ethics committee to approve what was going to happen.

I tried to make sure I had everything I could possibly want to take with me for our baby. I packed a special blanket that my mother had saved from when I was a baby, and a poem I had written many years before when we did the IVF program. A few months previously, in my excitement at getting ready for our new baby, I had tentatively started buying baby things, including a little green blanket. I knew that our baby would never get to cuddle it in his cot like I had hoped, so instead, for the last few nights we were home, I put it in the bed with us, so that it would have his Mum and Dads smell on it so he would still know we were with him when we had to leave him behind at the hospital.

The day came and we drove into the hospital. It was rainy and miserable, and I was glad. I couldn’t stand for it to be a nice sunny day the day we had to lose him. I somehow shut out the part that meant we would be losing him, and all I could think was that today was the day our baby was being born, and we were finally becoming parents together. We stopped for lunch and and everything seemed strangely normal. When we arrived at the hospital I got nervous, and as we passed through the hospital doors I realized Scott was on the verge of panic.

Just then, like a miracle, Richard—the head of the hospital’s psychology department, came to check on us and make sure our admittance was going smoothly. He was a godsend. I doubt Scott could have supported me right then and held himself together as well, and he really liked Richard. Richard eased us through the admissions process, and we were soon settled into a private labor ward. The midwife kindly talked us through the process. Soon I was being induced.

At the time I didn’t really understand that the drugs they used to induce me would also be the drugs that put our baby to sleep. Had I connected the two concepts then, I don’t know how I could have gone through with it. At some point between later when I started to feel mild cramps, our little baby’s heart gave its last beat.

I had a bad reaction to the drugs. My temperature spiked and I started vomiting everywhere. The midwife said that it was unlikely that I would give birth before the next day, so I settled in for a long night of pain. I didn’t recall labor pains being this sharp when I had my boys. These were excruciating. I have since learned that contractions for an induced labor abortion can become much more intense much more quickly.

At about 9:00 PM the midwife gave me something for the pain, which made a big difference. I was quite sleepy, and dozed off and on for several hours. I remember dozing off, and then suddenly felt a pop inside me and liquid gushing everywhere. I felt embarrassed, like I had wet the bed. I also felt ashamed for other people to see me like that. The midwife had left the room, so Scott had to ring the buzzer to get someone in. I was quite upset, and had to be settled into the shower while someone cleaned up.

I went back to bed, and dozed off again, but then eventually lay there wide awake. The midwife checked to see how dilated I was and announced that our little boy was ready to be born. I was surprised, as I had not felt much pain at all. In hindsight, I guess they had given me a lot more pethadine than they would normally give a pregnant woman, as for me it would not make any difference to the baby’s health.

Scott sat beside me while the midwife told me when to push. Within a short time, he was born. There was no crying, just silence. Thank God the midwife talked us through it. Scott was asked if he wanted to cut the cord, and even though he said no, as we both expected, I was still pleased that he had at least been asked. The midwife then wrapped our little boy in a blanket very gently, and passed him to his dad to hold him.

I felt excited and proud even though it was not like a normal situation. Somehow, that fact hadn’t kicked in. We had our baby, a little boy, and that was all that mattered to me. The quietness in the room did disturb me however. There wasn’t the usual bustling around weighing and measuring the baby, doing the APGAR test, holding him on my tummy while the cord was cut. Instead, a hushed silence in the darkness of 4:00 AM. He was born in the stillness of the night, a gentle and quiet birth with dignity and a serene sense of peace in the air, and for that I am grateful. Harsh, broad daylight would have shown us both stripped raw emotionally, but we got to hold our baby in the early hours of the new day, and the darkness was almost soothing.

Scott’s face was a mix of rapture and pain. “My little boy” he said, and I knew that this had touched him at a level which I had never seen before, and would probably never see again. Immediately he bonded with our baby, and an adoring father grieving for his dead son. I dont remember when I finally held Joe in my arms. I was content to watch Scott staring with awe at the little bundle he so gently held. I was fascinated by how perfect his fingers were. They were tiny but quite long, like Scott’s. I could see the little knuckles, and tiny little fingernails. Even though he was so young, his nose was quite clearly like mine.

The nurse eventually brought in a little Moses basket for Joe. It was tiny, but still huge next to him. It had a mint green lining and was very pretty, just like a new baby should have. We chose some tiny clothes for him. I picked out a little gown with little red and blue elephants and mice because it was so cute. We chose matching booties and a little blue hat as well. The midwife took Joe away to give him a bath. We were asked if we would like to do it, but we declined We were scared of what he might look uncovered. Looking back now, in some ways I wish I had done it, regardless of what he looked like, but at the same time, I am glad that I have nothing but positive memories of how he looked.

Scott was invited by the nurses to choose a special memory box for Joe. He also was asked to choose a little toy for him, from a collection of soft toys donated by other parents who had also experienced ending a wanted pregnancy. He chose a pink hippopotamus because it was tiny and would not look too big next to Joe in his crib. The hippo had been donated by another grieving family in loving memory of their baby boy, called Austin. We placed it in the basket next to Joe just like any new baby would have, to watch over him as well.

Scott and I were both very tired by mid morning and we tried to have a sleep. Scott held Joe in his arms but he was scared he would fall asleep and drop him, so we put him in the basket. I held the basket on my bed next to Scott, but I was too scared as well that I would fall asleep and knock it over. We stayed with him quietly for several hours, and then the hospital chaplain came to see us.

He was very kind, and arranged a special healing and blessing ceremony for Joe. He even made up a special service booklet for him. A ceremony was held in our room, and this is the only time that I have ever seen Scott take religion seriously. This ceremony to me was Joe’s christening, even though he had died. It meant a lot to me that Joe was baptized and blessed even though he had already gone to heaven.

As the day went on I realized we would have to get up and leave our baby Joe behind eventually. I couldn’t see how Scott was going to manage this. I didn’t dare to think about how I was going to manage it. Finally, amid the long hours of silence, Scott quietly said that he thought Joe was getting cold and his color was darkening. Joe’s skin was getting more bluish/reddish as the hours went by since he had died inside me. We knew that we could not stay there for ever, and somehow had to pull ourselves together.

We called the midwife and just forced ourselves to go through the necessary motions. I tucked Joe into his little basket lined with my own baby blanket. We both kissed him goodbye. How soft and cold his cheek felt. The nurse carried him out of the room and it hit me that I would never see him again.

It was a blur after that. I had to have an ultrasound to check that the placenta had completely detached. I lay there and saw my empty womb, where only such a short time before I had seen a little baby wriggling around. It was true then. The baby was gone, just like he had never been.

We made our way back to the hospital room to gather our things. One of the midwives had told us earlier that we could take home doubles of the clothes Joe was wearing. Up until this point, I had been waiting for them to mention it again, but when I did, the new midwife seemed quite surprised. In the end, she went and took his clothes off him, and despite me explaining to her that the baby blanket was to stay with him, she still brought it back as well. I became quite distressed as all I could imagine was Joe lying there cold, naked and alone like he had been abandoned. It had only been on the strength of my belief that he was dressed as we had last seen him, that I had been able to face leaving. She promised me that she would return it straight away, but it was not the same, and my last memory of Joe had been shattered.

This last development completely unsettled me, and whereas before I had felt that I could cope with leaving, suddenly it all seemed wrong. We got to the main doors of the maternity wing a wave of panic struck me and I froze. Scott supported me until I calmed down. Finally, we left the maternity wing and our baby behind. It was late afternoon, gray and rainy.

I promised myself I would find a way to tell Joe’s story, even if I am the only one who ever reads this. I have done it a little bit at a time, as best I could manage. Now that I have told this story, maybe I won’t have to keep reliving it in my mind, because it is all there on paper and I don’t have to worry that I will forget. However, I know that for the rest of my life, every morning at 4:00 AM I will go back to that silent place with him.

 

 

photo credit: Full Moon via photopin (license)