I named my baby Ethan
Diagnosis: Trisomy 21
A story of multiple losses, fertility issues
and a woman's brave struggles
By Ethan's Mother
My journey has been long, four years of disappointments, medical tests, procedures all resulting in the same message...you are healthy, just very unfortunate. Ethan was my eighth pregnancy in four years and by far the most agonizing loss, he is the one I had to choose to let go.
I want to say how blessed I feel to have found this website and this circle of support. So many other women, just like me, each of our stories uniquely heartbreaking. Each woman wanting nothing more than to be a mother, each loving her unborn baby fiercely. Each having to make a painful choice, the ultimate sacrifice. Each choosing to loose a piece of their heart forever. Your stories gave me strength in knowing I was not alone, and that there was somewhere safe that I could share my heartache and loss. This is my story.
I named my baby Ethan. I chose the name because it means “strong”, “enduring” and “constant”. I looked up names that meant peace, or rest, but chose strong because that is what I have to be.
The hurt is so deep and raw it takes my breath away. On the whole I am being strong, for my 7 year old daughter, my husband, my family. I can go about my day, play with my daughter who remains blissfully unaware of all that has occurred, tell those who ask that I will be O.K. But when I take the time to really think about what has happened, I cannot breathe. I feel a tightness in my chest and the pain of loss in my heart. I think what if it the tests were wrong and it was a mistake? I know my thoughts are irrational but I can’t stop them right now. I know in time I will heal and I hope that writing my story from beginning to end will help me.
My daughter was three when we decided to start trying for our second child. I was 37, fit and healthy. Our daughter had come so easy to us. Our first attempt to get pregnant. The pregnancy was smooth and I loved every moment. Her birth was joyous and she altered our world forever. I loved her fiercely from the first moment. I could not imagine sharing myself with any other children for a long time. I just wanted to wrap myself around her, cherish every moment. I was a professional, always intending to go back to my career. But when that moment came it broke my heart. I wanted to be home, raising her. We had a wonderful nanny who loved her. I worked close by and could visit during the day when I chose. I knew she was having a good experience. I rationalized. I planned. I knew when I had my second I would not go back to work. I would be home for every moment. I would be home to take my girl to school, and have my chance to be a stay at home mom with my second baby. I would recapture what I felt I had missed out on.
We got pregnant easily again. We were excited. I started spotting at the 3 month mark, just when I was getting ready to share the news with family and friends. My husband was away of business. I went for an ultrasound, just to make sure all was OK the doctor said...expected nothing atypical as spotting is not out of the norm. When the doctor told me the sac was empty, that I had probably miscarried 3 weeks ago I was confounded. I remember walking into the bathroom before leaving the clinic and the weight of the news hitting me. Seeing the tears and expression on my face in the mirror. I remember bracing myself to walk back out of the clinic, full of pregnant mothers-to-be and making it to my car before breaking down. Even today that memory is so vivid to me. My first experience with a D and C followed.
The second pregnancy came easily again, just 3 months after recovering from our first loss. I made it to the 12 week mark. Our daughter was turning four the next day, it was her birthday party. Just as I was heading out the door I felt a gush, and saw the deep red blood. My second D and C followed a week later. I remember the doctor assuring me that they “got it all” and thinking that that was such a strange thing for her to say so casually as I lay on the table consciously sedated. There were results for this loss, XXYY, a boy that was not meant to be. I could accept that and waited to try again, although saddened that my planned timing of being home when my daughter would start preschool was now lost – a realization that crushed me as much as the pregnancy loss itself.
I did not heal this time though. I experienced 6 weeks of on and off bleeding before I started to hemorrhage one morning. I remember lying on the bed as my husband prepared to take me to the hospital. I didn’t know why I was hemorrhaging and I was scared. I said to myself that I would stop trying to have another baby, praying to just make it home tonight to my daughter. After being diagnosed with “retained product”, my third D and C followed. After two more pregnancies that ended before they really begun at the 6-8 week mark my doctor referred me to a specialist and fertility and genetic testing commenced.
All tests came back normal for both my husband and I, so we were told to just keep trying. Getting pregnant had not been our problem, staying pregnant was the issue. That changed in the coming months. Six months without success was unusual. I was referred to a fertility clinic. I was told we were great candidates for IVF, but that it would only help us get pregnant again faster, not guarantee that I would not miscarry. IVF did not make sense to us. I was referred for my first hysterosonogram and diagnosed with uterine fibroids that were preventing implantation, likely a result of scaring from the D and C's and retained product. I felt cheated of time. Angry that it had taken so long, almost another year to diagnose the fibroids and what seemed to me to be an almost obvious diagnosis after my history of easily becoming pregnant. A surgical hysteroscopy followed to remove the fibroids and I was cleared to “try again.” But trying had started to loose its allure.
The emotional ups and downs of all our losses and subsequent infertility were starting to take a toll on both of us emotionally. I remember being on vacation and the wind whistling my daughter's curls in the car, my husband smiling, and thinking to myself this could be enough...I could be at peace with just us three. But it was one thing to think it. It was another to speak it. When we were home from vacation my husband told me one night that he was happy with just our daughter, ready to move on, but deferred to me to make that choice. If I still really wanted to try for another baby he was supportive of that to. I was so angry. Angry at him for speaking the truth I was starting to feel in my heart. I started to feel this was now my mission alone and I was angry at myself because I couldn’t give up. The implications were too great, giving up meant walking away from all my other hopes and dreams of motherhood. It meant accepting the career path that I no longer even cared about. I became more obsessive in this quest. I bought ovulation predictor kits and pregnancy tests, testing at the earliest point I could every month, feeling frantic that time was running out.
I had a second hysteroscopy which came back clear. Following this procedure I had unusual spotting that I hadn’t had after the first procedure. I took a pregnancy test, and got the double line. My specialist booked me in for an ultrasound. After examination it showed that I was in fact pregnant but it was diagnosed as ectopic. I ended up in the hospital, needing two injections of a fairly significant drug used in chemotherapy to complete a miscarriage. I was broken. I felt cheated. I started to accept defeat. My specialist asked if I was committed to still trying, I said I wasn’t sure, that it was hard to give up. We talked about my age, that this was the factor of my difficulties. Even though by today’s standards 40/41 was not outside of the norm, for me it seemed to be the reason for our losses.
I made a benchmark for myself. Said I would try until I was 41. Of course when 41 came and went I said, well maybe 42... Yet the stress of it all had been so hard on us both by this point and I knew it. I didn’t laugh like I used to. I thought a lot about how my relationship had changed with my husband. I fell asleep in my daughter’s bed with her every night, curled tight around her little warm body wishing this age and moment could just last a little longer, spending less and less time with my husband as a result. But I was also on this hamster wheel.... didn’t know how stop running and get off.
Two more early losses followed in the spring after I turned 41. I went for counseling. I was starting to want closure. I wanted to accept my life and try to move on. I took some time off work. I walked at the beach by myself. I found the seven prettiest stones by the water, and I threw them into the ocean. One for each pregnancy loss. I said goodbye to my dreams. I said I would stop. I said I needed to take my life back. My husband I and talked. We agreed it was time. Almost four years had taken its toll. I didn’t stop outright but I slowed down the process. I stopped buying the predictor kits. I stopped looking at my ovulation calendar. But I couldn’t start taking birth control again. That seemed too final, too definite. I rationalized I would soon though. At 42 I would end my journey. My mindset started to change. I thought more about the reality of having a baby and an eight year old. How our lives would change. How my relationship with my daughter would change. How my daughter would be starting high school when my youngest would be in grade 1. How different this experience would be than it had been with my daughter. How tired I felt. I acknowledged that the reality was different four years later. I cleaned out the cupboards, but found one last ovulation test. I used it thinking this would be the last one. I got the smiley face. It was a Saturday. We had no plans to be anywhere but home. Our daughter was occupied happily. I didn’t really think I would get pregnant. Honestly, at this point I thought my body could not carry a baby.
When I learned I was pregnant again I said this was it. No matter what the outcome this was the end. I prepared myself for the imminent loss and what that would signify. I had an ultrasound at 6 weeks. The pregnancy was confirmed. It was in the right place in my uterus, not ectopic, but there was a large cyst on my ovary. Nothing uncommon apparently, just something to watch. We went on vacation. I started to bleed while we were away. 4 days like a period. I grieved this final loss but also hoped that maybe the blood could have come from the cyst. When we returned I went for a follow-up appointment and ultrasound. We were all surprised to see our little baby on the screen. Now 10 weeks old. The beginnings of a form. My specialist grinned at the screen and printed us a picture. The baby kicked a leg. My husband smiled and held my hand.
After so many early losses 10 weeks felt like a milestone, I thought we had done it. Our patience and perseverance finally had a happy conclusion. We were optimistic. A phase of bleeding had already occurred and we still had a baby. My specialist “graduated” us to her private maternity practice. We were on our way.
With our history though we wanted testing. We wanted to make sure our baby was healthy. We had discussed all along what our decision would be if a test came back positive for a serious chromosomal abnormality. We knew that we loved our unborn child to the extent that we would let them go if not healthy, if their life would be full of challenges. We opted for the Non Invasive Prenatal Screening Test – a simple blood test with high accuracy for several genetic markers. But I was confident that this time we would be OK, really how much bad luck can one person have? What were the odds that this test would show anything?
The results of the NIPT test came back at the 12 week mark. Positive risk for Downs at over 90%. I felt like the world was pulled out from under my feet. My throat was so tight I could not breathe. I sat on the floor and cried. I punched the sofa. How could this happen to me again? There was a false positive risk, but it was low. An amniocentesis was required to diagnose. But an amnio could not be done until I was 15 weeks along. I needed the diagnosis but it felt so cruel to knowingly continue a pregnancy I was inevitably going to lose. I had been through enough grief, enough loss, I did not know how I would, if I would, survive this experience unbroken forever.
I was starting to show, my baby continuing to grow. I went to work in loose blouses, crossing my arms over my stomach when coworkers came into my office to meet or chat. We held onto hope. My husband rested his hand on my stomach at night. I talked to my baby every day. I prayed, I bargained and I pleaded with the universe... please let us be the 2 percent error. When I read to my daughter at night I hoped my baby was hearing my voice, even though I knew in reality it had not developed that capacity yet. I held my stomach every night when I went to sleep, curled my hand around myself trying to protect my pregnancy, wanting my baby to feel all the love I had for it.
I struggled with all the information I was being presented with in the weeks leading to the amnio. D and E or induction? I could not phantom either. I could not even think about the reality of a D and E at this stage of pregnancy but the thought of delivering this baby equally crushed me. I did not think I had the strength to do it. It meant my daughter would have to know what was going on... how could we get through such an experience with her not catching on, without having help around the house from one of our parents? I worried if we did not tell her that my daughter would think maybe she was at fault somehow for mommy being sick. I thought maybe it was time, this time, for her to know.
I set the groundwork with my daughter. The opportunity just presented itself one day. I can’t remember how it came up in the exact moment, but she had recently watched a nature show and the mother elephant had difficulty delivering her baby and the baby elephant had died. My daughter is very into science. She had lots of questions. So we talked about how babies grow, which we had done before. This time we talked about how it takes nine months for a person to grow a baby, but that sometimes something goes wrong and the baby doesn’t grow and can’t be born. I compared it to the sunflower seeds she had planted in the garden this summer. How some had died and how some had grown tall. She asked what happens when a baby doesn’t grow. We talked about how the doctor helps the mommy, just like the vet had helped the elephant. She asked what happens to the baby. I said different things. I said some people ask the doctor to make the baby into dust, so they can go somewhere special and throw the dust into the wind and let the baby become part of the earth again, knowing that this is what I wanted to do, thinking maybe she should be part of that experience. She accepted that answer and moved onto to something else as seven-year-olds do. I was relieved that I had managed to lay the ground work for a more difficult conversation later on.
I had a follow-up appointment with my specialist at her maternity practice. Sitting amongst a room full of happy pregnant couples was challenging. My husband and I bickered over something and sat on our cell phones doing work while we waited. The appointment itself was very disappointing. I thought she would have a wealth of information for me to consider. She offered nothing except her condolences given we would terminate if the amnio was conclusive. She spoke of the very likelihood of the NIPT test being accurate and offered her counsel if we wanted to discuss maintaining the pregnancy despite the positive result. I left her office feeling bitter and disappointed in her, someone who I had respected greatly for my care over the last three years. She had not even done a routine check for the baby’s heartbeat. The last time she had seen me was at the 10week mark. I was now 13 weeks and having to wait two more weeks for the amnio. What if I had already lost the pregnancy and just didn’t know it? What if I was grieving and torturing myself everyday for a baby that I had already lost?
I went to see my family doctor. I asked him to check for the heartbeat. He talked about the accuracy of the NIPT test and the difficult decision we would have to make. He tried to find a heartbeat and couldn’t. He recommended a follow-up ultrasound to confirm. I felt relief. I thanked my baby for not having to make me choose. I told the ultrasound technician that I knew my baby was likely lost and I wanted to see the screen. But there it was. Arms and legs moving. I asked for a picture to take home with me. The ultrasound doctor came into chat with me, I was again alone, my husband at home caring for our daughter which is what I told him to do. The doctor herself was beautifully pregnant, I thought of the irony. She talked to me about the baby’s lymphatic system showing a likely defect, a thickness in the neck that was linked to chromosomal abnormalities. Another piece of information for me to contemplate as I waited for the amnio, which she said is all I could do.
We had our amnio at 15 weeks. The doctor, nurse and technician were so kind, knowing that we had a preliminary result for Down syndrome. My husband was there, we watched the screen. I knew in my heart this was maybe the last time I would see my baby. I asked if they could tell us if it was a boy or girl. I had not discussed this with my husband but I wanted to know everything I could about my baby. It was a boy. That night my husband wept. Through all our other losses I knew he had experienced grief but I always thought his grief was not to the same magnitude as my own. With this pregnancy we had both shed tears when we discussed the test results and what we would do. But tonight was different. I saw for the first time how broken he was too. He said knowing the details of our baby’s gender, that it was his son, made it worse for him. Seeing the baby so developed, with a spine and feet was so hard for him. He said this was the saddest day for him. He said he understood my need to know but he didn’t want to know anymore details. I understood and we cried together.
While waiting for the results of the amnio I learned that I did not have a choice about the procedure. Not having to choose, it was a mental relief for somebody else making that choice for me. I was told that inductions before 17 weeks were not done at my hospital, which is a leading Women’s Hospital, since inductions are not as successful at that stage and often result in complications that require a subsequent D and C. I was told that if we chose to terminate, a D and E would be the course of action for us. I was also told that I would only be given conscious sedation. The weight of this reality felt like a fist was crushing my heart. I had had conscious sedation with the D and C's and knew I would be somewhat aware of what was happening, would hear noises and people talking. I prayed that I would have the strength, that the experience would not break me.
I got the preliminary results of the amnio back within a few days, the RAD. It confirmed Trisomy 21. I asked if it could be an error in anyway given the final amnio would not be available still for weeks. The genetic counselor confirmed that the RAD is diagnostic, it is a complete chromosomal count and the count shows an extra 21. She asked for my next step and I was referred on for termination. The nurse called me that same day and advised me of the process and dates for the following week. Day one with the insertion of laminaria for dilation and day two for the procedure. She told me I would report to the surgical wing and that the procedure would involve general sedation in an operating room. I called back later, confused as this information differed to what I was told the procedure would involve. I spoke to a different nurse. She said I actually had two choices, surgery with general sedation or the clinic wing with conscious sedation. She did not know why I had been referred and set up with the surgical option but indicated that my chart and history had probably been a factor and the procedure arranged in a manner that would be least traumatic for me. I felt scared and relieved. I had never had general sedation before but I knew this was a better option for me. That I could just go to sleep and not have to deal with the reality of the procedure and my loss in that moment.
It was Friday and we were scheduled to go away with friends that weekend, for an annual family trip with all our children. I did not tell my husband that the results had come in. I wanted to just normalize this last weekend. To not have the following week looming over us both like a shroud. My friends simply knew that I was pregnant and was experiencing difficulty again. They knew I did not want to discuss it. They were all wishing us well and giving their support. It was hard to not breakdown, knowing what I knew, but I managed to do it this one last time. On the way home my husband asked when the results would come in and I told him then, and we braced ourselves for this last painful journey together.
We went together for the first phase. Signing off consent for surgery and meeting with the counselor, doctor and nurses. The doctor reviewed my “unusual and complex obstetrical history”, acknowledging the losses that we have experienced over the last four years. He indicated that we were noted as not being interested in an autopsy. No one had actually asked us. My husband was not. He did not want to know. But I had to. I was scared that the amnio may come back with some inconclusive results and then would forever wonder if an autopsy would have given us the information needed to have peace. I asked for footprints, knowing that this was a common request and offering the hospital made, but feeling somehow too that this was almost inhumane and cruel given the procedure. My husband and I had talked about the remains prior to the appointment. I wanted them cremated and given to us. I did not want the hospital to dispose of them with other lost pregnancies. This was our baby boy, our loss, and I wanted his ashes for our own closure. They asked about our next plans, whether we would be trying again for children. We said no. This was the end for us.
I asked about stopping the heartbeat. I was told that it was difficult at this stage because the baby was quite small but it could be attempted if I wanted it. I was so torn. I could not stand the thought of my baby being ripped from me. I wanted to protect him. I wanted him to be at peace inside me. I was assured that the neurological capacity was not yet developed. That in addition I was under general anesthesia so the baby would be too. That he could not feel pain. I could not decide. I felt so broken and panicked. My husband did not want to stop the heart. It meant having to watch on the ultrasound screen the loss of our baby. He asked me bluntly if I really wanted a dead baby inside me for the night and I knew I did not but felt selfish for feeling that way. I wanted these last moments with my boy. I wanted to feel him inside me and tell him how much I loved him. I could not be the one who gave the order to end his life, even though we were doing just that by selecting to terminate. The doctor and nurse were very kind. They knew how difficult this was for both of us. They were patient and gave us time. In the end we went home with just the laminaria and our baby for one last night.
I cried that night, deeply and softly after my husband was asleep. I held my stomach. I kept telling my baby I was sorry over and over again. That I wanted the best for him. That I didn’t want him to have a life full of pain, health problems and heartache. I kept thinking about this billboard sign that I had seen in the summer on the highway. It was from a disability foundation, with a picture of a teenage boy with Downs smiling largely and the caption “see the ability”. I felt so guilty. I said to my baby, would that be you?
The laminaria was more painful than I expected. I appreciate now that it was doing its job, contracting and dilating my cervix just like regular labour. I had to be at the hospital the next morning at 7:30am. My husband had to get our daughter to school. Our daughter was still unaware, given the procedure was a day treatment we had decided to continue to protect her innocence. We do not have family close by to help us and had not called them to come. We wanted to be on our own. I had to check in for the procedure by myself and then my husband would meet me there as soon as he could, and well before the surgery. I took a taxi. The sun was just breaking through the clouds. I looked at the sky and heavens.
There are two entrances to the hospital, the main entrance and the labour and delivery entrance. I had been instructed to go to admitting at the main area. I was relieved. I did not want to be around other mothers arriving to give birth. But when I arrived I was redirected to labour and delivery. I could feel the tears starting and my throat tightening as I walked to delivery admitting. This is where I came to have my daughter seven years ago. This is where I had felt like a champion, a warrior, strong and invincible. Thankfully there was no one else there but me. It took all my strength not to cry as I sat alone at the admitting desk, in the same chair I had sat before, as the nurse checked me in and redirected me to surgery. I managed the strength to get up in one piece and walk down the hall before I stopped and kneeled over at the waist, breathing deeply, willing myself the strength to pull myself together and get to where I was supposed to be. I was glad to be by myself because if my husband had been with me I would have broke, I could not have held it together.
I made it in, got my bed and surgical gown. Again such kind nurses, explaining the next steps, offering me blankets, providing pain relief. By the time my husband arrived I think I was in active labour. The pain was significant and my teeth were chattering and I had the shakes. The nurses gave me heated blankets and I waited. I slept a bit. Then it was my turn. I remember coming into the operating room and being covered with blankets, the anesthetist talking to me gently. Explaining what was happening and how I would feel. I remember trying to get my free hand under the blanket to hold my baby one last time and not really being able to get it there. Then I woke up. It was over. I had lost him. I was glad that I did not have to experience anything but sleep. But it felt so surreal. Even days later it still does. He was here, and then gone. Like he vanished. The nurse brought in a little card with the footprints and I tucked them into my book, knowing and respecting that my husband, who was sitting with me may not want to see these and knowing that I could not bear to look at them either.
We came home that afternoon. I rested. My husband offered to go make the arrangements with the funeral home for the remains before picking up our daughter from school. I appreciated the quiet of the house. I could not stop thinking about the footprints. I didn’t want to look at them yet, I think I knew the impact they were going to have on me. But I wanted to do it while I was alone. I only looked for a moment, but that moment is ingrained in my mind like a scar. There were two tiny footprints side by side. Perfect. Ten little toes. Like a ghost of my baby. I felt like all the air had been sucked out of my lungs. I wanted those prints to remember, but it made the loss so much realer than I even expected.
I took the advice of my counselor in the coming days. I wrote a letter to my baby boy. I named him, just for me. I am going to make a book with the few things I have... the letter, the ultrasound pictures, the pictures I took of my own belly in the mirror the night before I lost him forever. I am flooded with grief. It comes in waves. I have hours of normalcy where I go about my day, play and read with my daughter, spend time with my husband. We are leaning on each other more than then we have ever before. I want to be with him, I want him to hold me, which is different than the other losses when I wanted to push him away. But I have these moments when I am by myself, when I burst into spontaneous tears, when the weight of our loss seems to debilitate me. It has just been 4 days, and I know time will help heal me. But right now is simply hard. The night is the worst. That is when I am flooded with irrational thoughts. Like the test was a mistake, that we decided to terminate too soon, that the final amnio and autopsy will contradict the earlier findings. That we killed a healthy baby, the baby we strived for and suffered so many losses for over these years. My husband took me in his arms one night and said quietly that there was no mistake. And he is right. It helped me to hear him say those words. I know he is suffering too.
My body feels like it is punishing me. My milk came in. I knew that could happen but did not quite expect it to this significance. My breasts are engorged and have been for days. It is a painful reminder that my body did its best and that it was ready. That it could actually carry a baby, something I had come to believe it couldn’t do. All I can do is wait for my body to understand that there is no baby. That he is gone. So I chose this time to write. This is my story from start to painful end. I ask myself everyday why I have had to bear so much pain. Why women older than myself are able to just be starting their families in some cases. Why it was not meant to be for me. My mind is already trying to rationalize my heart. Thinking what would the odds truly be for this to happen again. Wouldn’t the next time statistically have the greatest chance of success? Haven’t I experienced it all, to the very worst? It is a mind trap I know, but a hard one not to start falling into. I think I need to rebuild my life. I think I need to love the life I live. I think I need to let this experience be the final chapter in my journey.
But most of all right now I need to grieve. Grieve my little boy and find peace in my heart that I made the ultimate sacrifice for him. That I didn’t let my own dreams of having another baby, my struggles with pregnancy and loss, steer me away from the understanding that this was the right choice. I will never forget the weeks I carried my little boy. I will never forget the loss of him. I will never stop feeling sorry. The pain will be constant. A piece of my heart will always be broken. But I will not hide from this memory. Baby Ethan will endure with me forever, and I will be strong for him.