Disclaimer: This story includes images of child loss that may be triggering to some.
“‘There are multiple things wrong with your baby.’
These are the words that changed my life forever. These are the words that made me question everything I once thought and believed about life. These words, in a single moment, made me realize what little control we all have over our lives.
When I was younger, I always knew I wanted to be a mom. After growing up as the oldest of four kids, I loved (almost) everything about the chaos that came along having multiple siblings. So, when my husband and I decided it was time to start trying for a family of our own, we figured it would be simple, and it was. We found out we were pregnant with our first in June 2015, and it was followed by a completely uncomplicated pregnancy that resulted in the birth of our oldest son on February 28, 2016. It was everything I could have imagined, and I knew immediately I wanted more.
Over summer 2017, when he was about 18 months old, we decided to start trying for another, and there it was again in September 2017, another positive test. We were stoked. As the weeks progressed, none of the symptoms I had with my first came, and I began to worry. We made it to our first appointment at 8 weeks and they scheduled me for an ultrasound. The next day, the bleeding started, along with a month-long ordeal that eventually resulted in me needing a D&C.
We were told to wait a month and then we could try again. So, we did, and there was another positive test in January 2018. But I was already bleeding and my numbers weren’t rising. It was happening again.
We were told we were young, and there was no reason to be concerned, so we tried again. Another positive test. April 1, 2018, Easter Sunday. It almost felt like a sign. This was it. This was the baby who was meant to be a part of our family. Things progressed. My levels kept going up, we saw a heartbeat, I was measuring well. This was actually happening.
Through it all though, I couldn’t shake this feeling. I couldn’t shake the fear. I kept saying to people, ‘If we bring this baby home.’ I knew I just wanted to make it through our anatomy scan before I would know everything was okay. We had also decided we weren’t going to find out the gender this time like we did with our oldest son.
The day came. July 30, 2018. My husband and I both got off early. I picked up our oldest, and we met in the hospital parking lot. We talked about getting ice cream after it was all finished and how this was going to go well. We just needed this scan to go well and then everything would be okay. Throughout the scan, our sonogram tech chatted with us. I asked questions about our baby’s size and if they were cooperating. I remember my nerves getting the best of me and feeling lightheaded at one point. I also noticed she kept going back to our baby’s head and it seemed to be really dark, like there was too much black showing up where the brain should be. She also didn’t make any attempts to get pictures of our baby’s face, in 2D or 3D mode, which seemed odd. She finished the scan and said the doctor would be in to see us.
Now, this is normal for our OB office. A doctor always comes in after a scan, so no red flags were raised at this point. After a few moments, the doctor came in, and instantly, the room felt off. He sat down at the screen and started to scroll through pictures before landing on our baby’s head. That’s when the words came.
‘There are multiple things wrong with your baby.’
Okay, I thought, we can handle this, and my mind started racing. Surgeries, hospital stays, whatever we need to do. We’ll do whatever we have to do.
Then the doctor continued. Alobar holoprosencephaly, not compatible with life, fatal. He was surprised our baby has even made it this far. He didn’t know how our baby was still alive.
I began to panic. I turned to look at my husband, and he was holding our son, crying. What does this mean?! What do you mean our baby is going to die? I felt like I blacked out. This isn’t real, it can’t be real. Babies don’t just die. This isn’t supposed to happen. There has to be something that we can do!
But there was nothing. The doctor then asked us if we wanted to know the gender, and we said yes. A boy. Our second son. They gave us our photos, told us we would be referred to Maternal-Fetal Medicine, and sent us on our way. We walked out of the hospital and out into a world that had somehow not changed even a little while ours was completely crashing down around us. We got to the parking lot and I just screamed. There is no way to explain this feeling unless you’ve experienced it yourself. The complete collision of realities: feeling our son kicking and moving while simultaneously knowing he would never even take a breath.
When we went to MFM a couple of days later, everything was confirmed and more was found.
Bilateral cleft lip
Absent nasal bone
Two vessel cord
Rocker bottom feet
The doctor suspected it was chromosomal, due to the sheer number of anomalies that were found, and we decided to forgo doing the amnio since it wasn’t going to make a difference.
We began to make the kind of preparations no family ever wants to think about and on August 9, 2018, we went into the hospital to have our son. Percy David was born at 2:46 p.m. surrounded by more love than I could have hoped for. He was here and to us, he was perfect. Family and friends met him, we took photos, and after what would never be enough time, we handed our baby to a nurse and left the hospital without him.
The weeks that followed were a complete blur. We planned a funeral and were able to celebrate his little life. The world continued to turn for everyone around us like nothing had happened, but we were still just stuck there in the rubble of what our lives once were. A stark ‘before’ and ‘after’ of a life we had and a life no one ever wants. As time went on, life became more manageable. We got his genetic results back and it was confirmed. Our son had a chromosome condition called Trisomy 13. We were told this was a ‘fluke’ and it wouldn’t happen again. This felt like a little hope. Within a few days though, we were contacted by a genetic counselor who told us some cases could be caused genetically and we would need to be tested to know for sure. She told us this was unlikely the case, since there was no history on either side of our families of anything like this happening.
A few weeks later, those results came back. Winners again. It was discovered my husband has what is called a Robertsonian Balanced Translocation (RBT) 13;14. Now, this has absolutely no barring on his life. It simply means he has one 13-chromosome and one 14-chromosome that are connected and therefore, must always travel together when it comes to passing genetic material onto a baby. It also increases the likelihood of a baby ending up with too few or too many chromosomes, like Percy. We were told it was unlikely to happen again, but an increased chance of experiencing more miscarriages is there. We were given the option of IVF with PGD testing but decided to give it one more try on our own.
In March 2019, seven months after Percy died, we found out I was pregnant again. At that moment when I got that positive test, I felt this instant wave of calm, like I knew that everything was going to be okay. The next 9 months were filled with anxiety and stress. None of it felt real, especially since we were exactly 12 days ahead of where we were the year before with Percy. Making it past the point we did with him felt like testing fate.
But then, against what felt like all possible odds, she was here. On November 24, 2019, we welcomed our daughter into the world. It all felt like a dream. I found myself asking again, is this actually happening? How is it possible she’s really here? After two and a half years of what felt like relentless heartache, we felt like we could finally breathe.
In the months since, I feel like I’ve gone through every emotion possible. It feels incredibly strange and surreal to live in a world where two of my children constantly grow and change, but another never will. Seeing my two living kids grow makes me feel unbelievably thankful for what I have, and yet also sad for what I will never experience with our son who died. I get emotional every single time I’m holding the two, both because I’m happy for what I have and sad for what is missing, what will always be missing. I find myself constantly asking myself, why doesn’t he deserve to be here with them? With us?
These emotions will never stop. I will never hit a point where I will ever be okay with what we have been through. I will never be ‘fine’ with the fact my son is dead. But I feel both. I am elated with the life I have and distraught by what is missing.
I am so thankful though. Thankful for my husband who has walked side-by-side with me through all of our pain. Thankful for all three of my babies and the two we never met. Thankful for the things I have, even if it isn’t in the way I ever imagined.”
This story was submitted to Love What Matters by Chelsey S. from Southcentral Idaho. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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