On January 2, 2016, our daughter was born, and with heavy hearts we said goodbye later the same day.
In the days following her passing, I’ve felt an overwhelming desire to speak about Aria and tell her story. When you birth a baby who is no longer in your arms, you often wonder if she was ever real, or if this is all some kind of awful dream. Talking about her makes me feel like she is still our daughter, and that all of the precious moments we had with her actually happened. I feel her presence whenever someone says her name. I can’t tell you how deeply meaningful that is. Although it’s extremely difficult to revisit everything we have been through with our daughter, I’m finally allowing myself to open up and tell the world about our sweet girl because it’s a story that deserves to be told.
On July 28, 2015, Brian and I learned we were expecting our first child. We had some worries about our ability to conceive a child naturally, so we we felt incredibly relieved and so overjoyed to finally be parents!
In the weeks that followed, I endured bouts of morning sickness and exhaustion. Most days, I felt like a zombie and started to seriously wonder if I was going to be nauseous forever. Then the glorious sixteenth week of pregnancy began and I started to feel like myself again. This was also the week we learned that the little baby in my belly was a girl! For several weeks, I had a very strong feeling she was a girl, and was elated to learn that I was right. I think Brian was even more thrilled, he had been hoping for a girl, and even had her name all picked out! When the ultrasound tech announced “It’s a girl!”, Brian also announced “Aria!” and I knew that was it. Her name was Aria.
Immediately after learning her gender, we began working on her nursery. We were so excited to have her join our family, we couldn’t wait to get everything set up. We assembled her crib and filled the room with pink! There was no doubt that this room was meant for a little lady.
Before we knew it, we were halfway through the pregnancy. I couldn’t believe how quickly twenty weeks had gone by. I was really looking forward to the twenty week ultrasound because it was much more detailed than the ones we had before, and I loved being able to see our sweet girl on the screen. I remember that appointment so vividly because it changed our lives forever.
During the ultrasound, the technician had gone from talkative to totally silent. I felt the mood in the room change and I began to get nervous. I kept reminding myself that we had several ultrasounds before this and everything looked fine. I had no reason to worry and I was probably overreacting. I kept looking over at Brian and wondering if he felt the tension too. After about 30 minutes, the tech left the room and it felt like an eternity before my doctor came in to discuss the images. I knew from the moment he entered the room that something was wrong.
“Lets talk about what we saw on the ultrasound.” His face was serious. He wasn’t going to tell me everything was fine. “It looks like the baby has a cystic mass on the right lung. This is known as Congenital Cystic Adenomatoid Malformation.” I didn’t know if I should cry or not because truthfully, I had no idea what he just said. He was speaking a language I didn’t understand. He explained we needed to see a specialist right away and were scheduled to see a Perinatologist the next morning in Pensacola.
After a long and sleepless night, we got up before the sun and drove to Sacred Heart Hospital in Pensacola. During this appointment, we had another ultrasound before the Perinatologist came in to speak with us. When he walked in, he was upbeat and I took that as a really good sign. He explained to us that she did have a CCAM on her right lung, but at this point it was small and not obstructing the esophagus, or placing pressure on the heart. Her prognosis was really good, she would need surgery after birth to remove the tumor but after that she would lead a normal life. We would have to come in for weekly ultrasounds to make sure the mass didn’t get any larger, but everyone was very optimistic that she would outgrow it in a few weeks. Most babies with a CCAM are born without symptoms of the tumor and went on to lead normal lives. At this point, we were confident that Aria would be one of them.
For the next three weeks everything continued to look great. Aria was developing perfectly and the tumor wasn’t growing. We felt so lucky that even though she had a congenital defect, she would be just fine. We continued to prepare for our little girl’s arrival and fell more in love with her each day. Her kicks became stronger and stronger, and we were amazed at how active she was.
We were walking on sunshine until things took a turn at twenty four weeks. We learned that her mass had doubled in size, and that it was time to start looking into a larger and more experienced hospital. Thankfully, her long term prognosis still looked good, but there were concerns that she would need a specific ventilator at birth that was only available at hospitals with a level four NICU. We decided to work with the excellent team of doctors at the Center for Fetal Diagnosis and Treatment in the Children’s Hospital of Philadelphia.
When we arrived in Philadelphia, we were nervous and scared but knew that if anyone could save our daughter, these were the doctors to do it. For two long days, we had meetings with obstetricians, nurses, neonatologists, fetal surgeons, a two hour ultrasound, a fetal echo-cardiogram, and a fetal MRI. It was exhausting, and at the end of it we were very anxious to find out what our treatment plan would be.
My primary doctor entered the consultation room with two nurse coordinators and a fetal surgeon. She asked if she could speak freely, which already made me nervous. She began by saying “Aria is a very sick kid.” My heart sank and I could feel the tears building in my eyes. She explained that Aria’s tumor had doubled in size, again. At this point, her entire right lung appeared to be destroyed by the tumor. Her heart was now pushed all the way over to the left side of her chest and pancaked against the side of her body. She was struggling to circulate blood properly causing congestion in her brain. She developed hydrops, an accumulation of fluid in the body as a result of diminished cardiac function. The fluid had collected in Aria’s abdomen, head, and lungs. Her placenta was thicker than normal because it was having difficulty pumping enough blood into her body. She also developed pulmonary hypoplasia, which is incomplete development of lung tissue. Since the tumor placed so much pressure on her other lung, it wasn’t able to mature properly. In her entire body, she only had a small sliver of healthy lung tissue on the left side. This meant her chances of ever breathing on her own were very slim. The tumor was also placing pressure on her esophagus so she wasn’t swallowing fluid properly in the womb. This led to the development of polyhydramnios, an excessive amount of amniotic fluid, which is why my belly was so large for my gestational age.
Brian and I were stunned. We couldn’t believe this was our baby they were talking about. She was supposed to be a success story and this was not what we were expecting. No one ever imagined her tumor would become so aggressive. We were warned that at this point, Aria’s heart could fail at any moment. We didn’t understand how in just one week, her prognosis had gone from excellent to grim, but we couldn’t to give up on Aria. We started to discuss open fetal surgery, which we hoped would be a cure for her issues. But our doctors explained that medicine doesn’t always equate to miracles. We were told that her odds of just surviving the surgery were slim, and Aria’s chances of living to see her first birthday were even less likely. As the conversation continued, I could literally feel my heart ripping apart. It felt like God had totally abandoned us. We were so lost and completely devastated. I couldn’t understand how the baby who was actively kicking in my belly during this whole conversation could be so ill.
With the advice of our doctors, we decided to keep trying steroid injections to hopefully improve her condition, and get a little further along in the pregnancy before making a final decision about open fetal surgery. We hoped the steroids would buy us some time, so Aria could keep maturing and increase her odds of survival. Unfortunately, we weren’t be able to get very far.
The day after my fourth steroid injection, I went in for another ultrasound and to have my vitals checked. Aria’s condition looked about the same, which was a good sign. As long as she wasn’t getting worse, we still had a chance and a glimmer of hope. Everything changed when the doctor checked my blood pressure. One of the big concerns for a baby with hydrops is the development of maternal mirror syndrome. This is a serious, and potentially life threatening condition for the mother. It’s similar to preeclampsia but also comes with several other complications of its own. High blood pressure is a major symptom of mirror syndrome, and it appeared as though I had developed it. My doctor admitted me immediately, and started running several tests to see if my elevated blood pressure was actually mirror syndrome.
After about an hour, the results were in. My doctor came in and informed me that my liver wasn’t functioning properly, my reflexes were brisk, and they were worried about my platelet count. She confirmed I had mirror syndrome, and if we didn’t do something about it quickly I could start having seizures, and this could even become fatal. Much like preeclampsia, the only cure for mirror syndrome is immediate delivery of the baby. On top of all of this, the excess amniotic fluid was putting a lot of pressure on my body which was causing contractions, and my cervix was beginning to dilate. I was starting to go into preterm labor. My mind was spinning, and I could see the fear in Brian’s eyes. He was terrified, and so was I. My doctor said “we need to start preparing to deliver to preserve your health” and I have never felt more helpless in my entire life.
I couldn’t deliver Aria yet, I was just over twenty six weeks pregnant, it was far too early! This felt like giving up. I couldn’t give up on my baby girl. I knew the reality of the situation, if we didn’t deliver we could both die, but I wanted to do everything to keep Aria going.
Then the neonatologist entered my room and explained that she was here to discuss what was going to happen after delivery. She told us that healthy babies born over ten weeks early have a lot of struggles and often do not survive. Our baby was already very sick and now was going to be extremely premature on top of that. I could see the heartbreak in the doctor’s eyes as she spoke. She said, we could try to put her on a ventilator, and place tubes in her chest and abdomen to drain the fluid, but these things would put Aria under a lot of stress and would likely only extend her life by a few hours. It was clear that the best thing we could do for Aria was to hold her, love her and make sure she is comfortable. This was the hardest decision we have ever made. The thought of our sweet girl having to suffer ripped our hearts apart. We wanted to keep our daughter with us for as long as possible. But we felt it would have been selfish to put her through the pain of being hooked up to machines, and having multiple tubes placed in her body, just to keep her here for a few more hours. Although we wanted to keep pushing forward and fighting for her life, we all knew we had done everything we could.
In what felt like mere minutes since the moment they first checked my blood pressure, I was walking down to the operating room for an emergency c-section. I squeezed Brian’s hand as we made our way down the hall. I kept wishing the hallway was longer, I wasn’t ready to enter the operating room yet. When we reached the door, I hugged Brian harder than I had ever hugged him before. There were tears streaming down my face. I was so scared and so unprepared to say goodbye to my daughter.
As I entered the operating room, I felt so much regret for all of the times I complained about pregnancy. I would gladly endure morning sickness every day for the rest of my life if I could just have my baby girl with me. As the anesthesiologist was giving me the spinal block, a nurse held me and promised me everything would be okay. She told me she was so sorry we were going through this, and I could hear the strain in her voice. She meant it.
Once I was all prepped for surgery, Brian entered the room. I mustered up all of the strength in my body and gave him a smile. He did the same. Even in that moment, we both felt the need to be strong for each other. Within minutes, I heard the doctors say “Hello Aria!” I looked up and saw the tears pouring from Brian’s eyes as he said “she’s beautiful!” I longed to see her face and although they brought her over to me within seconds of her birth, it felt like a lifetime. Brian was absolutely right, she was beautiful and perfect in every way. She had my nose and Brian’s forehead. There was no doubt, she was ours.
I pressed my cheek against hers and felt the incredible warmth of her body. It was the greatest feeling in the world. I saw the awe in Brian’s eyes, he was so in love with this child, and I felt myself loving him even more in that moment. We knew our daughter’s time was going to be short, but we refused to let ourselves be sad while she was still with us. We wanted her to feel our love and for her life to be joyful. So we held her close, showered her with kisses and repeated “I love you” over and over again. Her grip wasn’t very strong but she managed to hold onto her Daddy’s finger. Every movement she made was a beautiful miracle and we celebrated each one. Even though she was tiny, she fit perfectly into our arms. Aria managed to give us a lifetime of wonderful memories even though her life was much too short. I barely remember being wheeled out of the O.R. and back into our room. I was so focused on Aria that I didn’t notice anything else.
Losing Aria is the deepest pain we have ever felt. We miss her more than I could ever put into words. She will always be the baby who made us a family of three. For the rest of our lives, when people ask us if we have children, we will tell them about Aria. In her short life, she brought us so much happiness and love. We feel so blessed to have been given the opportunity to be her parents.
In our hardest moments, we felt so alone and abandoned by God. But we know there is hope even in the darkest moments. With death comes the promise of everlasting life, and we take so much comfort in knowing we will be reunited with Aria in heaven. Until then, we’ve promised to do our best to keep moving forward with our daughter in our hearts each day. Although the pain will never go away, we know that eventually we will experience good days again. One day, smiling and laughing will feel natural to us, and having normal conversations won’t feel so strange.
Through all of this, I’m incredibly grateful for my husband. He’s showed so much strength and courage during this journey and I wouldn’t have made it through the last few weeks without him. He’s literally carried me when my grief brought me to my knees. He has reminded me of the beautiful moments we had with Aria when I swore there was no way I could keep going. One of my biggest fears after losing our daughter was that I would lose Brian too. It’s so clear to me now that this has only brought us closer together and life without each other would be completely impossible.
My biggest hope for the future is that Aria’s life will have an impact on our world. Our society is so afraid of talking about miscarriage, still birth and infant loss. People feel so uncomfortable bringing up the names of babies gone too soon because they don’t want to make the parents sad. I wish more people realized that being able to talk about our daughter actually brings us the most joy. Yes, it may make us emotional but that is okay! It’s so much harder to grieve when it feels as though the world has moved on and forgotten about your child. So please, remember us on mother’s day and father’s day, wish our girl a happy birthday each year, and don’t be afraid to say her name.
All in all, the point of this story is not that our daughter died. The point is that she lived, and that is a beautiful thing.