I wanted to share my story, because I am finding that I am apart of a very silent community full of mothers that are lost in how to move forward, or to even begin to know where to start a healing process. I have been very fortunate in my pregnancy loss recovery to have such a great support system that I feel my recovery has been healthy process. I want to speak for the mothers that feel they can't, because the pain is just too great. I want to bring comfort that I can talk about my story, even if other mothers can't.
I am the type of person that feels that I was placed on earth with a purpose to be a mother. I wanted to be a mother long before most of my friends at a too-young age in my early 20's. As we grew older together, my friends started finding their perfect person to start a family with. After much pain and learning, I finally found my husband and we decided we were ready to start a family together. He wanted to be a father just as much as I wanted to be a mother. Everything was perfect.
We were both hesitant, as for medical reasons we both were not sure if we would be able to get pregnant. May 2022, we got our first positive test. We cried with tears of happiness and gratefulness; we felt as if a miracle happened.
We scheduled our first appointment. They wouldn't see me until I was 9 weeks along. I, for some reason, was always hesitant to fully embrace being pregnant, because I was so aware that anything can happen in the first trimester. I knew the percentages that nothing was guaranteed, along with my awareness at the amount of friends and women in my family that also experienced miscarriages. I knew that each day was a gift that I got to carry this cell, that soon would grow into a baby. We had our first ultrasound at this 9 week appointment where we saw an existence of our baby on the ultrasound. It was real.
Our 12 week check up came next, which we were so nervous for. We were confirming heart beat today at this appointment. Though we were not able to have another ultrasound at this appointment, we were anxious to just hear audio. My OB, who I adored dearly and took such amazing care of me this entire journey, had a very difficult time finding a heart beat. I laid there on the table after a few moments too long mentally preparing myself. "No heartbeat, this is it. This is what you feared would happen."
If only this is the way I could have found out that my baby was not going to make it.
She found a heart beat. The weight that had built on my husband and I in that room in a matter of minutes dropped and tears came flooding. What a scare-but baby had a heart beat. Next step: they drew blood for genetic testing and we left the office beaming that we were told "baby's heart beat is strong." I texted my family right after the appointment, "strong heartbeat!" We announced to everyone on Facebook. Out of the first trimester!
A week later, we get the phone call for the bloodwork results. They asked me to come into the office to review the results with the OB. I knew right away something came up on the results that they didn't like, but I was in "go mode." The medical field prepared me for these "react now, feel later" scenarios. My husband was not prepared and didn't understand. I had to remain calm to help him understand what this all meant. I researched all of the syndrome's that are tested for on the genetic testing panel, and learned what most of them meant. I only knew what Down Syndrome was, but I got a picture of what the rest of the syndromes were.
The next day, we both went into the appointment together. We were told the results showed 70% high risk for Pateau Syndrome. I remembered reading about this syndrome. Not genetic. Basically unpreventable; cells did not form and chemicals did not mix; the recipe was not done properly equating to a deficit of chances for life. There was nothing anyone could have done.
We were explained that this testing did not confirm positive or negative, this was just risk. We were told to see the High Risk Fertility doctor upstairs to proceed with discussion of an amniocentesis. This is the procedure where they insert a long, thick needle into your belly to gather amniotic fluid to test in a lab to confirm positive or negative for, in my case, Pateau Syndrome. This was something I was not wanting to do before finding out these results, knowing how invasive and painful this procedure was. After discussion, my husband and I decided I would do whatever procedure I had to do to know if this would be a healthy baby that had a chance at life, or not. We got an appointment with the High Risk Doctor the following Tuesday.
At this point, my husband and I decided we mentally and emotionally could not handle finding out the gender. To potentially lose a baby, a fetus at this point, somehow was less challenging than us facing the concept of losing a son or daughter. I think this could be a very controversial decision, understandably, and I completely see the other side as well. This decision could be seen as burying, avoiding, etc. Our decision to not find out the gender won't be for forever. I know someday we will want to know. But in this time, we could not bare it. We were not strong enough. This is something that we are continuing to work on, and one day, we will be strong enough to look at the gender results locked away in our safe. Until then, it will remain accessible when we are ready.
My birthday was the weekend after our 12 week appointment, a few days before our appointment with the High Risk doctor to discuss the amniocentesis. The results of the testing weighed heavy on my mind and heart. I had wonderful friends and my husband trying to make my birthday special, and I tried to put on a face and show my appreciation. But I remember all I wanted to do was cry. Cry for my fear, cry for my baby, cry for my husband, cry for our-what felt like already-loss.
Tuesday, our appointment comes. 1 week exactly since the appointment with my OB where we received the results. We were ready to discuss all options with the doctor, ready to face everything together, strong.
They take me back for the appointment, our first step was the ultrasound for them to take all measurements of baby. We were explained that they were looking at length of arms, legs, and features of baby that could show or confirm Pateau Syndrome before the amniocentesis. We were thinking this would be standard ultrasound, then meet with the doctor in another room face to face for discussion.
Wrong. So. Wrong.
The ultrasound tech was very nice. A little overly nice, almost insensitively nice considering the reason we were there. We weren't there for fun, but I appreciate how nice she was trying to be. As she's doing the ultrasound, we are staring at blobs on a screen. My profession in the medical field has been with all adults, so babies and OB is all completely foreign to me. However, I know when I sense bad news. She was quiet. At this point I was at 15 weeks, so baby should have been developed to where we could hear a heart beat on the ultrasound. She's telling me where head and legs are, and I asked her "so we should be able to hear the heart beat on this scan right?" She pauses. I can tell she's being very careful with her words. "Yes this scan you would be able to hear a heart beat." She tells me that next we have to proceed with a transvaginal ultrasound for them to get a better visual of baby. I respond with "no problem at all, whatever we have to do."
She leaves the room for me to prepare for the next ultrasound. My husband and I are nervous, but we are okay. Something in my gut was telling me something was wrong, but my husband wasn't there yet. I was seeing things in the staff he wasn't seeing yet. I told him, I need them to confirm a heart beat.
After a long, what seemed ridiculous amount of time waiting for her to come back to do the next ultrasound, she comes back in the room apologizing for the wait. Following her in the room, was a nurse dragging a cart with an Ipad. On this Ipad was a much older male medical professional, to which I at this point had no idea what was going on. Why were there so many people in the room with a male on the Ipad for a transvaginal ultrasound? Like excuse me, privacy!
This part went so fast. Seconds. There was shuffling, cords being hooked up into machines, things moving around, and then the man on the Ipad started speaking. I could not hear anything he was saying, as the nurse and the ultrasound tech were preparing equipment for the ultrasound. I am presenting pleasant as I had not met these new people, hi nice to meet you, smile, etc. Suddenly I hear his voice, and only his voice, the room went silent.
"There is no heart beat."
I sat there, really not processing what he just said. The nurses instantly placed a hand on my knees in comfort, letting me know "we are right here." I just sat there, looking around the room at their reactions to understand. I look over at my husband and see his face in his hands, as he's bent over. I am starting to understand. I sit there-and as I try to mouth the words "okay" an attack of sorrow consumes me. I could not speak, I could not move, I could not think, I was paralyzed. I don't even remember, to this day, the rest of what he said. "Okay, Mama we need to do the ultrasound now." WHAT? They laid me down, as I am a wreck, to proceed with the transvaginal ultrasound. The doctor and nurses begin scanning the baby, taking more measurements, clicking and talking, as I lay their sobbing. For some reason they wanted me to look at the baby, I am not sure if they thought this would bring me comfort? They were pulling my arms, trying to get my attention to look at the scream. I let out a yell in mid-sob "I can't." They finally understood where I was at mentally. They finished the procedure, and all left the room except the nurse. This sweet, strong nurse, grabbed my hands and said "Mama, I need you to understand this is not your fault. I need you to understand this was not your doing, okay. You have to know that this is not the end for you, I need you to not blame yourself." She held me, as traumatized as I was, I nodded. She left the room for my husband and I to pick up the pieces.
I have never been dressed so fast. My husband and I collapsed in each others arms, not knowing how to even breathe properly at this point. What now?
I knew what now. Next was removal. I went into strong mode, walls-up mode. I knew what was next. We have to talk about how to get "it" out. This was not over for me, not yet.
I know this sounds so cold and distant to refer to my baby as "it". At this point, I was so incredibly traumatized by my experience, to now understand that I had been carrying a deceased baby for 3 weeks (we learned that baby's heart stopped about 4 days after our 12 week appointment, just outside of the first trimester, 4 days after we heard the heart beat) the mental torture began. To think of a (to be blunt) a dead baby in my stomach-my mind. Could. Not. Process. This. I have never felt so trapped in my own body. I could not touch my stomach, I could not allow my husband to accidentally touch my stomach without reaction, I could not look at my stomach, I could not acknowledge my abdomen. My brain did not allow it.
We went downstairs to my OB's office, as she requested for me to go see her immediately. She wanted to squeeze me in for an emergency appointment to talk about next steps. My husband was a wreck at this point, but I had stopped crying. I had to be strong for my husband. I had to get him through this part because I knew what I had to do next, I needed him. Would I have to deliver this baby? I have never pushed a baby in my life, how do I even do this? How do I even be strong if I have to push this baby out? I can't do this!
We go in to meet the OB. She extends her condolences, and I sit there emotionless and absolutely drained, numb, empty. I ask her what is next, ready for her to tell me I have to go into labor and deliver this baby. She tells me that we can proceed with emergency surgery for removal, she can put me to sleep and take care of everything for me.
I cry. And cry, and cry. She is saving me more than she understands in this moment. I get to go to sleep? I get to go to sleep. I get to rest. I get to just go to sleep. I am more than grateful that I get to just go to sleep and I don't have to do anymore work, she is going to take care of everything for me. She gives me the option to deliver awake, and I stopped her before she could even finish her sentence with "surgery, I need surgery, I need to just go to sleep and wake up with this done." She nods in agreement and understands where my mental health is at, at this point. Traumatized.
We go home. Beyond at a loss of what to do. We cry and cry, and cry together. We call our fathers and explain. We cry together. They call the rest of our family for us, so that we could just get through the next couple of days.
The next day I start to experience pain, which I soon learn are contractions. My body was trying to deliver. The fear of having to deliver consumed me, but my OB assured that everything will still go as planned for the surgery 3 days later, that Friday.
I did not sleep for the next 3 days, as the contractions were too strong to allow it. By the time Friday came, I could not walk for very long with out keeling over in pain from the contractions until they released, allowing me to walk again. They gave me pain medication and for the first time in weeks, I felt relief. I felt relaxed. I felt grateful to officially feel no pain.
Surgery was successful. My husband took me home and cared for me a few hours later. The trauma was over. Now the healing could begin. It felt relief to have my body back. Now I could process. Now I could heal.
Weeks go by, and my husband and I are continuing to be a team. Respecting each other's boundaries in topic, while acknowledging each others needs, in addition to allowing each other to talk about what happened to eliminate one of us burying our feelings and harboring grief. I had to acknowledge that his grief and loss will look different than mine, and that's okay.
We grieved, and the days turned into weeks. We were able to process, and not get over what happened, as my husband said, but move forward.
I dove into books to really help me understand what happened and what I was feeling, in addition to speaking to mothers that experienced miscarriages and loss as well.
"Whole"- by Heather Dolson, RN
"Bearing the Unbearable"- by Joanne Cacciatore, PhD
These books, many podcasts, and "being in my feels" so to speak allowed me to not get over, but move forward. I am still experiencing loss, but in a healthy way. My husband, my sweet, sweet husband has been experiencing his own loss from the father's perspective.
We are grateful we were a Mama and a Daddy for a very short time.
We have been medically cleared to try again, and we can't wait for our rainbow baby.
March of Dimes helps me feel like I can help other Mamas. It's not fair, to feel this pain, this different type of sad pain, but it is apart of us now. If I can help just even one Mama out, to understand that they don't have to get over it, just keep moving forward, then my heart can be just a little more full.
My strength has been tested, and I can't give up. I have too much to offer as a Mama for a sweet, sweet gift-a rainbow baby.
I will not give up.
WE cannot give up.
So much love to my Mama's with loss.