1) What is your personal experience with infertility / miscarriage / stillbirth?
I began my reproductive journey shortly after my marriage, when I suffered a hemorrhagic cyst on my ovary and had to have emergency surgery. My fear was that I wouldn’t be able to get pregnant, because they indicated that there was damage to the ovary, and I would continue to get cysts (I’d had them since the onset of puberty). Fortunately I was able to conceive my first child, a daughter. With her, my pregnancy was straightforward and relatively easy. It was what I believed was typical for pregnancy and childbirth.
After having a healthy baby, I wanted to get pregnant again fairly quickly, however that wasn’t happening, and the doctor felt that was because of my ovarian cysts. So when I was 28, I began the repeating cycles of Clomid and follicular monitoring. It finally was successful, and we began to plan for our second child. At my 19 week ultrasound, some abnormalities were found, and the following 4 weeks were a whirlwind of tests, after more tests, and more and more bad news. At 23 weeks, it was determined that my son, Jacob, had a rare chromosomal abnormality with a fatal heart defect (in fact the specialists had never seen a baby live as long as he had with so much of the short arm of the chromosome missing). I was faced with the excruciating option of either continuing the pregnancy, allowing him to die in utero, and then delivering him, or inducing labour and delivering him. All the tests showed that he was deteriorating, and once I knew he wouldn’t survive birth, I made the agonizing decision that no mother should ever have to make to be induced and deliver him. I could feel that he was in pain, that he was suffering, and I didn’t want him to suffer any longer.
20 hours of labour later, I delivered my first stillborn son. I remember his little features, as well as his stillness as I held him, and loved him for a few hours before I finally was able to let him go. We took pictures, and the hospital gave us a memory box to hold his tiny hat and blanket and footprints. I remember the agony of finally saying to the nurses that he could be taken. The placenta had not delivered, so I then had to go to surgery for a D&C. When I finally left the hospital empty handed, I was in shock, sore, grief stricken and feeling the bitter irony of my milk starting to come in.
Once you’ve lost a baby, any subsequent pregnancy becomes a minefield of fear, anxiety and yet, still, cautious hope. I remember my strong desire to get pregnant right away, and alternately my strong fear of another trauma.
I got pregnant fairly quickly after having Jacob, only to suffer a miscarriage at 8 weeks. I despaired that I wouldn’t be able to have a healthy pregnancy and birth after that.
My fourth pregnancy, with my second daughter was fraught with anxiety and fear. I was watched closely throughout the pregnancy, and put on modified bed rest at 7 months with elevated blood pressure. I’m convinced that the stress of all the fear and uncertainty created the risk. I remember the fear of the delivery, of wanting to know that she was okay, and also terrified of all the possible ways that things could go wrong. It wasn’t until I held my healthy daughter in my arms that my anxiety started to fade. Her placenta was falling apart, which was surprising, considering she was 9 days early. The Dr spent a long time trying to get it all out, but a month later, I had to have a D & C again, as I started passing more clots. She discovered that I had suffered from placenta accreta and because of its adherence to my uterine wall, I ended up with a perforated uterus, and back in hospital. At that point, I had to accept that my body wasn’t doing well with pregnancy, and we decided that would be our last baby. I had two healthy daughters, which felt like a miracle.
Five years after deciding to not have anymore children, I got pregnant unexpectedly. It brought a lot of tension and discord to our marriage for awhile as we navigated what was to become our new family. I discovered that the fear and anxiety of pregnancy was right back, even though I’d had a healthy rainbow baby. Because of my history, I was watched closely with regular ultrasounds and an amniocentesis. At 23 weeks, I had some pink “show”, so the hospital said to come in. They examined me and discovered that my cervix had started to open. I was taken for surgery to try to stitch my cervix closed. I awoke to the surgeon telling me that my amniotic sac had broken when he went in to stitch me, and then my cervix had closed. That period of time is a blur in my memory. I had to be told later what he had said, as I think my brain (and heart) went into complete freeze. I had 24 hours to be induced and deliver, otherwise they said that they would have to do a C-section. I couldn’t believe that I was here again, knowing that my son wouldn’t survive birth, or if he did, it wouldn’t be for long.
Those subsequent hours are a blur of tears, pain, and grief, and the feeling that my heart was being shattered. Fifteen hours later, I delivered my precious Nolan who died right after birth. I was given a short time to hold him before I had to be rushed away for an emergency D&C as I was hemorrhaging from another episode of placenta accreta. I remember the urgency in the operating room, as they realized how much I was bleeding. Things moved quickly to get me under, and the clearest moment before I was asleep is when a nurse whispered in my ear, “I was with you last night in the OR. I’m so, so sorry”. I went under anaesthesia not feeling quite as alone as I had been. She felt like an angel to me! Once I was stable and recovered enough to return to my room, I was able to hold Nolan and kiss him, and say goodbye. We knew what we needed to do after a loss, and so we took pictures, footprints, and this hospital also gifted us a memory box. The grief felt like a huge anvil on my chest, making it so hard to breathe. My girls were old enough to understand and they, as well as my Mom, also had the opportunity to say goodbye. I think perhaps that may have been one of the most difficult moments, watching their pain in the loss of their brother and grandson.
A few days after I got home from the hospital, I received a phone call from the Genetic Counsellor at the hospital. She was calling to happily inform me that the amniocentesis results were in and I was going to be having a healthy baby boy. I imagine that the moment that I told her that I had delivered him stillborn was probably one of the harder moments in her career. I still wonder how the two areas in the same hospital missed such an important piece of communication.
2) How has it made your life worse? How has it made your life better?
I am not sure that I would define these experiences as making my life worse or better. It just IS. I can remember the deep places of suffering that I experienced, but I can also appreciate the gifts that I discovered through the process. In the beginning, after each loss, it was hard to find the good. And yet, I felt it over and over again in the ways that I was cared for by those who were with me through the losses, both close friends and family, as well as the medical personnel who were with me in the darkest moments.
3) When and how did you realize that you were going to be able to carry on after stillbirth?
There were a lot of moments where I felt the darkness and sadness weigh me down. When my milk would come in, and there was no baby to feed. Having to bind my breasts. I remember laying in a fetal position in the bathtub,with the shower running over me, crying so that no one could hear me. I felt my aloneness in those moments, and numerous others in the months after both losses. And yet, each time, the light eventually started to shine again. I saw a therapist regularly, had an infant loss group that I attended, and did a lot of grief work for each of the losses. I also had to get up every day for my girls, they were my reason for living in those moments, and that ultimately brought me around to living again.
4) What have you learned through these experiences?
I think one of my biggest learnings is that we are not alone in our experiences. There are so many women out there who have similar experiences, yet it isn’t something that a lot of people talk about. I have learned that my story matters, my boys matter, and their lives are important. I am grateful for the people I know who are willing to talk about them with me. Saying their names, remembering their short lives, helps me get through, and I believe has taught others that their grief is welcome with me. The loss of Jacob and Nolan has helped shape who I am in this world, and I believe, has made me a more present mother for my surviving children.
5) What do you hold on to for hope/courage/strength on your bad days?
I hold on to the fact that I am a stronger person because of my experiences. I know that I can withstand a hurricane and come out the other side stronger. I also believe that my boys are with me all the time. I feel them in the moments where I miss them and wonder what their lives would have been had they lived. I remember them daily, and remember the joy I had in feeling them moving around inside me, and the gift that was.
6) In three words, describe yourself before / during / after stillbirth.
7) In what ways has your experience with stillbirth changed you as a person?
I know that I have been changed irrevocably. Losing children through miscarriage and stillbirth leaves a hole in your life that cannot be filled. There is so much curiosity and sadness about what the possibility of their lives could have been had they lived. I still notice children who are the same ages as my sons would have been and my heart hurts missing them. I am also more cautious about celebrating a pregnancy in others until the baby is here and healthy. I know that I am a more cautious parent than I likely would have been. My fear of losing one of my daughters feels amplified, greater than other parents who have never experienced loss like I have. I do also think that all the pain and heartbreak softened me as a person. I learned a lot about the kindness of others, and appreciate the many ways that I was supported and loved though the toughest moments of my life.
8) How have others responded to your situations? Has it impacted your relationships? What are some things you’ve been told that have been helpful/harmful?
I remember the platitudes and “dumb things” people would say to us, and I recognized that they came from good intentions when others just didn’t really know what to say. Friends didn’t understand when we didn’t want to go out socially, or be with others after the losses. I think I probably spent at least a year after each loss hiding away from social interactions. Even after a few years, I find that I have backed away from a lot of people, keeping my friend circle much smaller than it used to be.
Some of the more harmful comments were:
“God wouldn’t do that to you twice” (Um...yep...well, he did!)
“Well at least you have one/two healthy children” (And I don’t have my other two)
“At least you know you can get pregnant” (Yes, because that makes the loss so much easier)
“Everything happens for a reason” (Oh, and what was the reason?)
“There must be a greater plan” (Really? Really??)
“They’re in a better place” (No they’re not. They were supposed to be in my arms)
The most helpful thing that anyone ever said, or could say, is “I’m so sorry. I don’t know what to say.” That was true, and much more helpful than the platitudes.
9) Tell us about you. What are your hobbies / passions / pursuits.
I am divorced and in a wonderful, exciting new relationship. My marriage started to deteriorate after the loss of Nolan, although it took me a few years to leave. I understand why the statistics of divorce are so high when couples lose a child. Grief shows up so differently for each person, and the ways that it manifests can be counterintuitive to the other person. Having suffered other traumas, separate from the stillbirths, the toll was too great, and the climb back towards each other became insurmountable.
My amazing girls are still at home, but heading off to post-secondary soon. I am going to miss them a ton, as we are all really close.
I have always been an avid reader, and used to love swimming and running. All of those things fell by the wayside after my losses, and I am longing to get back into them.
I went back to school 6 years ago (for a four year program) and became a Certified Core Energetics Practitioner. It is a form of psychotherapy that incorporates our mind, body, and spirit. Traditional talk therapy is enhanced by body/energy work that brings us back into alignment, and helps remove the energetic blocks that hold us back from living fully into our lives. I lead retreats in Canada and the United States. I am so aware that my story has informed my work and healing with others. I can hold space and sit with others in their grief and fear in a way that I likely couldn’t have had I not lost my boys. I am finally pursuing the work that I have always felt I was meant to do, and I believe that my pregnancy experiences were part of the impetus that finally allowed me to step fully into my life.
10) One of my favourite quotes is:
“They say beauty comes from a spirit that has weathered many hardships in life and somehow continues with resilience. Grace can be found in a soul that ages softly, even amid the tempest.
I think the loveliest by far is the one whose gentle heart bears a hundred scars from caring, yet still finds a way to pick up the lamp, one more time, to light the way for love”
Susan Frybort ~ from Open Passages