October 15th is Infant and Pregnancy Loss Awareness day. I am here to share my story in an attempt to acknowledge a community of men and women who are grieving because they have lost their child or children. There are countless families that have been torn apart by a multitude of unthinkable tragedies. Most of these families are silently grieving on their own; not many people want to open up, or they simply can’t, about their losses. It’s hard. Its really f*cking hard to lose a child. How do you pick up the pieces of your life, when you don’t even really know what is left to look for?
Which brings me to why I feel so passionately. Well, it’s because I am a mother to a child whom I will never see grow up. My daughter, Leia, never got to be one of those lucky babies who, just after birth, gazed into their mommy’s eyes. She never got to see the face that had smiled so often, awaiting her arrival. She never got to take that first breathe, and I never got to hear her first cry. She never got to experience any of the things that her surviving twin sister experienced. She never will. That is because she passed away, just hours before she was born.
This happened just about four months ago. Now, if you asked me how much I knew about stillbirth five months ago, I would have scoffed at you. That is something from the olden days, right? Science and medicine have eliminated the possibility that innocent, precious children could die. Everyone has to have an opportunity to live… right?
So here is my story. It is kind of long, and I promise you, very tragic. I thank you ahead of time for dedicating your time to my cause by reading it. The awareness alone is what I am hopeful for, the emotion that follows is just a solidification of the point I want to make. This is my life.
It was just after Halloween 2013, when found out I was pregnant again. My husband Cody and I had been excited to add a sibling for our two year old son, Indiana. We are both from large families, so the more the merrier!
Nausea was the first symptom. There was an incredible amount of it. It was awful. I remember going in to our doctors office, and after seeing my green face and white lips, she made a joke about how sick I was,
“Twin pregnancy is double the sickness you know!”, har har har.
Twins? Ha! As if we would have twins. But that thought lingered there in the back of our minds… I was sent for my first ultrasound just after New Years- I was twelve weeks along. Our technician sent Cody out into the hall and began the process. I waited anxiously to see our little gummy bear, but she deviously had the screen hidden from me. She made a gasp, followed by,
“is this your first ultrasound?”.
Commence the waiting. The whole time I had a running thread of commentary in my brain- why would she gasp? what makes you gasp at an ultrasound? It’s fine. It’s nothing. It’s twins. I bet it twins. Oh my god it’s definitely twins. Why else would she gasp?…
The after her initial inspection of our little bean, the lovely, gasping ultrasound technician then goes to retrieve my husband, and I immediately fill him in on the gasp situation.
Twins, definitely twins, we agree.
When she returns, she asks us if we like surprises.
Ha! Of course we do! …she shows us the screen.
Two little gummy bears. Twins. We knew it. Looking back, we had pretty much know for three weeks. So we start to laugh. Then I started to cry. Then I started to laugh again. It went on like that for a while…
It took a few weeks for the idea of having two babies at the SAME TIME to sink in. Then, once the idea was settled, we became totally immersed in it. It was so exciting to tell every one about them. Our two little beans. Obviously, everyone was excited. You won’t find too many people who aren’t fascinated by the idea of twins. They are miracles! We were suddenly a part of an awesome club that not many people get the opportunity to join.
My pregnancy was going well, aside from my morning sickness and the utter exhaustion (building two babies is incredibly tiring). I survived on bananas and crackers for a while there. We discovered at our next ultrasound that we were expecting mono-chorionic/di-amniotic, or more commonly, identical twins. Now, all twin pregnancy is considered ‘high risk’, but mono/di is particularly so because of the placenta is shared between the two babies. There is a risk of a disease called twin to twin transfusion syndrome. We learned about this pretty early, and as a result we began a lot of monitoring. I had both an obstetrician and midwives, as well as a maternal fetal monitoring specialist doing my biweekly ultrasounds, and a team of nurses doing my weekly non stress tests. I had already had one very successful pregnancy, resulting in a 9lbs 12oz baby boy, this made me a prime candidate for another successful pregnancy. I had hopes to deliver our babies naturally and without intervention. It was a full time job, being pregnant with twins. But I was so well cared for, that I didn’t actually believe that anything could go wrong.
We discovered at 20 weeks that we were having two precious little girls. Sisters for Indy! So began the collection of girls things. So. Much. Pink. It was hard not to be excited about having two adorable daughters that I would be able to dress up and adorn. We often imagined what they would look like. I was nervous about mixing them up, being exactly the same and all, so I had little name bracelets made for each of them. Ripley and Leia. Baby A and baby B. I began to distinguish their different personalities by how they interacted in my ever growing belly, and I made different color associations with each girl. Ripley was pink and orange, Leia was purple and green. I began to coordinate everything this way, their diaper covers, clothes, blankets. It was part of my nesting. There was just so much to be excited for, it was hard to stop preparing. I bought a triple stroller when I was barely out of my first trimester. I joined countless Mothers of Multiples groups, and actively participated in making friendships with other twin mamas. I loved the reaction I would get when I told curious strangers that I had TWO babies in there, I loved their incredulous looks the most. I began to plan for all the incredible things I had to look forward to, and I was fully accepting of the difficulties that I knew I would face, having three kids under the age of three. Even if I had a doubt, I brushed it off, because this is what I was now- a mom of a toddler and twins, and damnit I would be a great at it!
Fast forward through almost nine months of this exhausting yet elated pregnancy to the morning of Monday, June 30th.
I said goodbye to my husband Cody, leaving him at home with our son Indy, and I headed to the hospital for my scheduled non stress test. I was looking forward to my appointment afterwards with my obstetrician. We had plans to discuss a possible day for my induction. I had been feeling strange that morning though, and hoped that maybe the girls would come naturally, and soon. I was nearly 38 weeks, which is full term for twins.
So, I get to the hospital and lay back on the cozy bed in the ante-partum clinic. One of my regular nurses comes to help me set up with the monitors. She has some trouble, as she usually does, trying to find both girls’ heart rates through my big belly. It’s tough when you have one squirmy baby, let alone two, to keep still long enough to record. I started to feel apprehensive about things. My nurse was feeling the same, so she summoned another nurse to help find Leia’s heart rate. Ripley’s recording was already steadily beeping away on the monitor. Again, trouble. The new nurse, Susan, then told me she was going to ask the on call OB to do an ultrasound. My heart was racing more than usual. This had never happened at the countless NST’s I had had previously. Come on Leia, I thought to myself. Please just be hiding under Ripley. Please. After a lot of hurried texting to Cody, the OB arrived. He seemed very casual, and unconcerned. He wheeled in the ultrasound machine, and chatted about his brothers vacation, which he was obviously jealous of. I was anxious. He sat on the end of the bed and began the ultrasound. I could see what was happening, as I was familiar with ultrasounds from the twenty or so amount I had already had. But unlike my typical chatty technician telling me what’s what, he was quiet. Then, with my heart about to explode with anxiety, he leans across the bed and says the words I never imagined I could hear, nor will I ever forget…
“This baby has passed.”
What. What. What do you mean?
That was about when I went into shock.
My heart should have exploded from the pace it was beating at. I couldn’t feel my fingers, or my arms or legs. My skin felt like it was floating on me. I went cold. My mind couldn’t actually compute what he had just said.
“Your baby has passed away, and we need to do surgery to get your other baby out.” He said this somewhere in reality, and I could overhear it through the haze of my shock.It was as if a switch had flicked, around me chaos was unraveling. I was being asked random questions here and there, I was answering them unknowingly. The on call OB was on the phone with my regular OB suddenly, orchestrating a Caesarean section for me. He explained that if we didn’t do the operation, my other daughter would be at risk for brain damage, or worse, death. What. No. This is wrong. This kind of thing doesn’t happen! I didn’t have the mental capacity at the time to ask questions or find answers. I mean, I was in shock so intense I am not even sure how I remember everything with such detail. I suppose its my mind trying not to forget any of the details of her, Leia, even the bad ones. Anyways, I luckily had enough sense to call Cody and tell him to get to the hospital. He knew that they were having trouble finding Leia’s heart rate, from my texting early, but I hadn’t had the nerve to tell him on the phone what the OB had just told me. I didn’t want to say it out loud, and shatter my husband’s world the way this doctor had just upended mine. So I told him to come ASAP, I was getting a csection. Not only that, but I they were operating as soon as my OB arrived at the hospital- a half hour at max. Cody was on his way. Then I started my rapid succession of messages to every person I loved and I needed to be with me. Come to RCH. That’s all they said. I don’t know how many of those people were excited, or happy or encouraged reading those messages. Only to arrive and realize what was actually happening. The world was literally falling apart around me, and I was forced to keep my shit together long enough to gather the support I needed to help me get through. I really didn’t know at the time, but I was laying the groundwork of support I would need to get me through the hardest phase of my life.
There I was, still laying on the hospital bed, rapidly text messaging, in a room of probably very terrified mothers-to-be, listening to all of this unfold. (I wonder how many of them are aware of October 15th now?) I had an array of nurses rushing around, undressing and redressing me in surgery apparel. I saw my regular nurse, Susan, the one whom had been monitoring me the past months. I asked her to hold my hand. She did. The look on her face said it all.
This was really happening, and she was the first person to truly appreciate the world that was crashing down around me.
I was then pushed down the hall way, texting Cody all the while. I was aware of everything, in my semi-floating body, but in such a state of shock I was cracking jokes. I started sending Cody photos of what I was wearing and where in the hospital I was. I still have those photos. They are a huge emotional trigger for me, for obvious reasons.
It was surreal. The operating room was like a scene from a movie. I texted Cody up until the moment before they knocked me out. I remember the feeling of the anesthesiologists fingers on my throat; I felt as if I were being choked into blackness. Then nothing. For two hours, I was asleep while they operated and then sent me to recovery. Our beautiful twin daughters were born at 10:58 and 10:59 am. Ripley apparently screamed her way into the world, and Leia silently sleeping, never to be awoken. By this time, most of our families had arrived to the hospital, most of them probably very confused. I don’t know what was happening with everyone else from the time they knocked me out until the time I woke up, but I remember waking up. That was the worst feeling of my life. Waking up, instantly knowing that my daughter was dead. Knowing that I did nothing to save her. Knowing that it was my body that had failed her. I remember crying harder than I ever have. I cried out for them to bring her to me, only to be told they can’t support newborns in this wing. They didn’t know what had happened- what I was going through. The pain was so acute. My body had literally been split open to save my still living daughter. My incision was on fire. I felt despair. A feeling so devastated, so low. My heart was falling down, down through a never ending black hole. The air was sucked from my lungs. I couldn’t breathe through the grief. And I was alone. I wanted nothing more than to see and hold Leia. I wanted to save her. I believed that I could save her, if only I could hold her. Every minute physically away from her was one more that I wouldn’t be able to bring her back with. I experienced every stage of grief at the same time that morning. Just writing this makes me want to vomit; the details will never dull in my memory. In the span of a few hours, I had lost a daughter who meant the world to me, and welcomed another who’s safe arrival was tainted by the death of her sister.
Unfathomable. That’s what I would have said, if you told me this happens to people, before I experienced it. Unfathomable.
But it is a reality. It’s my reality. Almost four months have passed now, from that day. I am still grieving the loss of my beautiful daughter, and I imagine I will be for the rest of my life. I go through waves of grief, sometimes I feel incredibly normal and unchanged, as if I have forgotten what has occurred. Then something as simple as seeing my other daughter smile, will trigger me and I fall into the pain as deep as ever. I have learnt to manage my emotion, as that is the best thing I can do. I can’t forget it, nor can I erase what has happened. I will always have to manage my life and perception of life around the tragedy that is Leia’s death. I have to do all of this while raising my children, and loving my husband, and growing stronger as a human being.
Time has made things easier in most ways, and I have an incredible therapist. I use my writing as an expressive coping tool. The most important foundation for my healing comes from the people who surround me, though. People who care enough to imagine what our loss feels like- to appreciate what we are going through. These people are part of what has inspired me to share our story. Amazing people, like Susan, the nurse from the hospital, who held my hand. Nicole, our doula, who has supplied us with countless resources, a compassionate ear for listening and a huge encouraging heart. Our community donated money to us, which was unexpected but so very welcomed, after hearing about our loss. We have received countless heartfelt messages and well-wishes from not only close friends and family, but mere acquaintances and even strangers. It is this kind of compassion- simple gestures such as hugs and kind words, that helps to support the bereaved parents across the globe.
You may be surprised at how many people you know who have suffered miscarriages, stillbirth or the loss of an infant child. There is a statistic, that 1 in 4 pregnancies will result in loss. If you are one of those 3 lucky people, you are probably unaware that unlucky number 4 is even around. But we are here, grieving our lives away. It’s exhausting, the grieving. As grieving parents, we need to express our emotion in order to move on from it. We need to know that its okay to feel sad, angry, confused. Our reality never changes from what it already is. There is no do-over. We can’t fix things. Our children will always be gone, while we still exist to remember them. What we need is people who care about us, and are willing to listen. We need to feel like we still have a place in this world, grief and all. We need to know our children’s memories, which is all we have left if them, are making an impact on the lives of others. When we surround ourselves with a community of people who have the decency to appreciate what we have to say, or our decision to not say anything at all, it makes life a little bit easier. There is no rationalizing away the death of a child, there is only accepting it.
There were many reasons why I decided to persevere through the panic attacks, emotional triggers, and anxiety surrounding the story of my daughters death to write it out today. I want to encourage grieving parents to know they are not alone. I want to remember their lost children. I want others to have a glimpse into the pain that we go through, each day. Mostly, I want everyone out there who has a child to go to them and express how much they love and appreciate that child, and each moment that they have gotten to spend together.
I hope that you will find something in my words that means something more to you, and that you will share it with others. Thank you. –Erin Spahr
For those of us who may not have as much time or energy to actively participate, I encourage you to please share this story, the story of my daughter, Leia. Share it with those who may not know that grieving parents such as my husband and I exist.
As incredible as it would be to cure all childhood and pregnancy diseases, we have quite a ways to go before diseases like TTTS and stillbirth are a thing of the past. Not to say that donations to foundations that will aid in the research of preventing such tragedies from occurring aren’t appreciated, though. Please do donate! There are a vast amount of charities and foundations that would appreciate the funding. But as monetary donations aren’t always an option, I want more people to know about the alternatives. For example, there are charities who take donations of old wedding gowns, to turn into beautiful outfits for gone-too-soon babies to be buried in. Another charity uses photographer volunteers to capture everlasting, tangible memories for parents of their precious children. The website www.october15.ca has some great resources for those looking to donate or volunteer, please check it out!