Mama to an Angel

Full disclosure and disclaimer: this is the story of how we lost our daughter, Olivia. It is an emotional and difficult thing to read about and you may find it graphic or upsetting.

I have wanted to put this experience into words so many times but really have struggled. Struggled to find the words, struggled with the thought of reliving it. But the reality is, I live with it every day. There is not a day that goes by that I don’t think of that time or Olivia. I am finally sitting down to put pen to paper because I think I can help, help women who are experiencing a similar loss, help women who are pregnant so they know what to ask and what to look out for. Help women just so they know they aren’t alone. Over the years I have had so many moms come to me, knowing that I had this experience, knowing that I had Olivia. Maybe, just maybe my hurt might help a few more.

I am going to back up a few decades earlier to when I was 7. I was in first grade, and a seemingly normal kid. That was until the one day I was at gymnastics, on the balance beam and my mom’s friend pointed out that my stomach look distended. Well fast forward to a visit to the pediatrician, followed by a cancelled ski trip, a hasty admission to the children’s hospital, and I was diagnosed with a Wilms Tumor on my kidney. I had Cancer. I went through radiation, chemotherapy and a major surgery that required several organs being “shaved” as well as the doctors removing my kidney and the large tumor that engulfed it. I was a 7 year old left with no hair, a portacath in my chest and a very very very large scar on my stomach. Jump to over two decades later, and I am Cancer free. Now, I do not mean to minimize this experience to a few short lines on a blog post, because it was so much more than that. It was a devastating and terrifying experience that rocked my entire family, impacted my sister’s childhood immensely, and left me being different, but a survivor. However, I was 7, and at 7 I was a happy go lucky Cancer kid. I had an immense support system that fought the battle with me. And while I was the one who beat it, I didn’t do it alone. After battling and beating this disease, I lead a relatively normal life with no side effects or complications. I take part in an ongoing study that follows Cancer survivors through all their life phases, tracking their progress and development.

Why is my Cancer history relevant? Well, we aren’t 100% sure but what I do know is I have always had a very close knit group of doctors who not only saved my life, but also have given me recommendations for other medical professionals who would take my history seriously. So, before I was even pregnant and knew what my journey would hold, I was referred to a high risk OBGYN.

Fast forward to 2013, Jon and I were married for just under a year and we were trying to have a baby. Fortunately, getting pregnant was the easy part for us. I know that there are a lot of moms out there who did not have it easy. My heart goes out to you, as I know how stressful and scary that can be. After 3 months of trying, we had a positive test and we were elated. As any new parent is, you are met with joy and terror at the same time. So, off we go to the OBGYN that was recommended to me by my Oncology team. I was seen more regularly than the average pregnant woman, and I got a sonogram every visit which was about every 3-4 weeks. My doctor used to joke that I was his healthiest patient. Everything seemed to be going along as it should. We hit our 12 week mark, we were comfortable enough to tell our families we were expecting, everyone was overjoyed. Onto our 15 week, and then 17 week (almost 18 weeks), appointments and the fear and anxiety starts to diminish. Ignorance was bliss.

My 17 week appointment was like any other. I was weighed and blood taken, I got scanned, got to see my babe, we found out at that appointment we were having a girl! I spoke to the doctor where he confirmed everything looked great, the baby was growing and we were on our way. That was a unique day because I had to be at work late since we were doing our semi annual store Inventory. At the time I worked about an hour away from home. I was an HR Manager for a very popular retail store and as head of HR for that location, Inventory was one of my main events. Lots of scheduling of staff and resources as we all prepared for a long overnight. I will spare you the details but I worked well into the middle of the night. I was on my feet a lot. I stayed at my Mom’s house that night since it was about 30 minutes closer to my work than driving home. I got home about 3:30 slept a few hours and headed back to work. I remember my boss being angry with me for getting there so early and not resting more. I assured her I would leave early and get some rest that night.

Well, so I thought. After work I did as I said, went home and went to bed pretty early. However rest wasn’t what I got. In the middle of the night I woke up to a bad stomach ache. Like I had to use the bathroom. I went and tried to go (sorry TMI) but nothing. I went and laid on the couch and then decided to try again. At that point I was met with blood. I immediately woke Jon. We scrambled to get dressed and planned to head to Hackensack Hospital where my doctor was located. At the time we lived in Jersey City, NJ and the hospital was about 30 minutes away. I was frozen with terror.

After running several red lights, and us barely making it out of Jersey City, I made Jon turn around. I was losing a lot of blood and I was worried I wasn’t going to make it to Hackensack. So, we pulled an illegal u-turn and headed for Jersey City Medical Center. My doctor did not have rights at this hospital but it was practically in our backyard and I thought if I can get medical help quickly I might save our daughter. I pause here because so many times I have wanted to regret that decision. But I can’t. I made the best decision I could in a very scary moment with the cards no one should ever have to be dealt. I can not look back at this moment with regret because the reality is, Hackensack or Jersey City Medical, the outcome would have been the same.

We went into the Emergency Room and they made me sit and wait. Yep, SIT AND WAIT. I finally went back to the window and expressed again that I was out of my first trimester and in my second. They quickly realized and rushed me up to the delivery floor. I remember begging the person pushing the wheel chair to hurry. They quickly got me into a bed. I remember being met with a lot of doctors and none of them sure what was happening. I was shaking so badly I couldn’t control my body or limbs. I was also freezing from the loss of blood. But, Olivia was still alive. She had a heartbeat and was moving; I got to see her on the Sonogram. There was no explanation for why my body was acting in such a way. After several exams it was determined that even though the baby at this point was alive, my body had gone into labor and she was not going to survive the birth. She was too young and not developed enough. So they put us in a room and we waited. Waited for my body to do what it was always going to do just 23 weeks early; have a baby. Those hours were unbearable The contractions had slowed and almost stopped. I remember being so hopeful the doctors were wrong that my body wasn’t going to give birth to her. I remember being in and out of the conscious state wishing it all to be a nightmare. I remember Jon in the chair next to me. He looked terrified and helpless but trying to be strong. I remember the first nurse praying over me. I remember the lullaby playing over the loudspeaker every time a baby was born in the wing. The lullaby that would not play for Olivia. I remember the big push, alone with Jon, and then silence. No cries except my own. I remember not being able to look, I was too terrified to have that burned into my memory.

And then the most heart wrenching part of it all, the nurse bringing her in for us to hold her. She was so small. Wrapped in a hospital blanket that they had cut. Her profile looking just like Jon’s. And since then, I have seen Olivia in every one of my babies. She was so tiny, not fully developed and her skin so pink and thin. They laid her in a basinet that practically swallowed her. At this point it was morning and our parents had learned of the news. My husband had to call our places of work and let them know what happened. Our parents made their way to the hospital. It was August 28th 2013 , my brother’s 17th birthday. I asked my mom not to tell him and ruin his day. “He can find out tomorrow”. My mother in law did a prayer service over Olivia, baptizing her.

I was so sick. Sick from the trauma, from the pain medication, I wanted to claw my way out of my own skin, escape this broken body and never return. After what felt like a very public exam with other doctors and interns present, I was discharged. A social worker came to talk to me but I couldn’t face it, face her, or make any decisions at that point. So we left. I went home to the bed I laid in only a few hours before and just wanted to die.

My doctor did not have rights at Jersey City Medical Center, so he was only able to guide and act from afar. After a phone call with my OBGYN explaining what happened and later an exam by my doctor in person it was determined that I had an incompetent cervix. That my cervix decided to shorten for some unknown reason, very quickly, and without warning. I was at the doctor 48 hours earlier where I was scanned, and my cervix was long - not a single indication for concern. The only reasoning was that it was possibly linked back to my Cancer earlier in life; when I received radiation to my abdomen. However, it is inconclusive and there is little data to support that. As my doctor put it, before Olivia I had “no credit” (like a credit card) and now after my one and only failed pregnancy, I have “bad credit”. So going forward we now know and will do everything in our power to stop it from happening again. I would need to have a Cerclage surgically placed to prevent my cervix from shortening. It would then be removed right before delivery.

I was numb for the next few weeks. I was on LOA with work and had to make some decisions quickly about my next move. As hard as it was I couldn’t go back to work there. It wasn’t their fault, it was mine, but I physically couldn’t do it. So I gave notice and began looking for a new job.

Olivia is buried in Franklin Lakes, NJ in a children’s cemetery and we visit often. We had a small ceremony for her with only immediate family. It was the hardest thing I have ever done.

But the unsung hero here is my husband, Jon. Even in my darkest days, my hardest times, Jon did not waiver. When I was blaming myself, and he could have easily blamed me too, he stood by as my rock. He was hurting too, he had also lost his daughter. He had even less control than I did. Yet when I didn’t love myself, he loved me enough for the both of us. For so many reasons I knew I married the right person. But right now, he loved me despite sickness and health. It was so early in our marriage and we were tested in such a terrible way, but he carried the burden for both of us.

Once my body physically healed we began trying again. It took me a long time to feel pyschologically ready. My body decided to give me every sign that she once existed. My milk had come in which was the harshest reminder of it all. Olivia was born, August 28th 2013. It took us until December to conceive JJ. I wish I could tell you I was relieved. Happy, yes, terrified even more so. I knew I was pregnant even before a test told me I was. I had tapped into a level of body awareness that made me feel crazy. The doctors must have thought I was nuts since I was so sure of it. After blood tests they did confirm I was, but very, very early. So began the doctors appointments now spaced very close together with even a more detailed eye on me. I was scheduled for my cerclage at 12 weeks. Surgery, awake, while pregnant. The cerclage was only a last line of defense should my cervix decide to act irrationally again. After surgery I was to take it easy for a few days and then could resume work and light activity. While the cerclage gave me physical reassurance, mentally I was terrified. I felt like I couldn’t bond with the baby growing in me. I was so guarded, it robbed me of all the joy pregnancy should bring. I didn’t even want a baby shower. I fought it until the very end out of fear that something would happen. Then surgery again around 37 weeks to remove the stitch. I was in disbelief when they placed JJ in my arms. Even then, I had a hard time registering I did it.

While there was so much pain with Olivia, if I had her, I wouldn’t have my JJ. Olivia was given to me and taken from me to teach me how fragile life is. To not take anything for granted and that your health and family are the most important things. I made better choices going forward. Made better employment decisions to ensure I could have family and balance.

Fast forward to 3 healthy babies, our family is now complete. We all have a guardian angel watching over us. She constantly graces us with her presence when we wake up to a pink sky in the morning. Our boys know who she is as we visit her at the cemetery. I wear her initial around my neck next to my other children as a reminder to me and the world that she existed. To this day, I struggle with the question “how many children do you have?”. “4, I have 4 children,” but depending on the audience I answer 3 and send a silent kiss up to the sky as I hate myself for denying her existence. She is who made me a mom and I will love her forever.

EDIT: When I wrote this blog post, I was pregnant with Brielle and did not know it (ha!). So, now, we can say our family is COMPLETE! I couldn't imagine life without our little Bri babes and I am grateful she surprised us.