Evelina’s Story

“She has a lung mass, and it’s pretty large. I want you to know that I’ve never seen a case of a CPAM this big with good outcomes.” As a nurse, I was used to doctors delivering bad news so matter- of- factly. It was incredibly hard to receive and digest, though. Alia Celeste was diagnosed with a CPAM, congenital pulmonary airway malformation during her fetal anatomy scan. It developed on her right lung, early in the first trimester, and grew fast over time.

We lived almost an hour away from the hospital, and the car ride home was filled with silent confusion and pain.  My husband and I were bouncing questions back and forth, but the main one was, “What now?”. We had never heard of CPAM before, so off to google we went. I also looked on Tik Tok and found a couple moms that shared their high- risk pregnancy journeys and educated their audiences about CPAM. I decided to share my journey as well, in faith that I could build a community around me to pray for our baby girl.

We were scheduled to see our maternal fetal medicine provider weekly for growth scans. It was found that I had severe polyhydramnios, an excess in amniotic fluid, that put my baby in danger of developing hydrops. Hydrops can turn fatal quick, especially if the fluid builds up in her chest and around her heart. The CPAM was already a big obstacle, because it was so big that it displaced her heart to the other side of her chest cavity. The mass also hindered her left lung to fully develop, which was another issue in and of itself. Our providers reiterated time and time again, that she wouldn’t make it without her left lung developing properly. They suggested termination every week we went in, but my husband and I believed that wasn’t a decision for us to make.

At 24 weeks pregnant, I had a preterm labor scare that put me on leave from work. I was unable to care for my toddler, who at the time was just over 1 year old. As the weeks went by, my own health started declining. I wasn’t able to eat or drink, because my uterus was so distended and pushed my stomach to a sliver. I was lethargic and had issues with tachycardia. One time, I went to the kitchen to make myself a cup of tea and I got an alert on my iWatch that my heart rate was 170! I was so uncomfortable and incredibly short of breath. Mentally, I was fighting battles I never wish upon anyone.

I begged my doctors for an amnioreduction, a procedure where amniotic fluid is removed from the uterus. I wanted to be somewhat comfortable in time for Christmas. They agreed and proceeded to schedule it the next morning. The reduction was complete, and it was like night and day! I was able to take long, deep breaths. I didn’t feel like I was in flight or fight mode anymore. Amnioreductions are a temporary comfort intervention; the fluid built back up within 8 days, and I was miserable once again. Two weeks later, I went in for another reduction. Meanwhile, we were going to our weekly scans and being told that Alia’s CPAM was getting bigger each time. We held on to hope for a miracle.

A few days after the last reduction, I couldn’t shake feelings of impending doom. I had such debilitating anxiety the entire day, thoughts about losing my baby. I was her home, but I couldn’t save her. I hated feeling out of control. Later that night, I expressed to my husband, “I am so anxious about losing her… but I think she already passed.”. I had purchased a fetal doppler for moments like this, where the anxiety was eating at me. I took it out and started scanning my belly. I couldn’t locate her heartbeat in my right lower quadrant, where she usually hung out. My husband noticed my internal panic and gave a go at scanning my belly. I turned to both sides and nothing. Silence. Immediately, the panic and hyperventilated tears came out. I called my hospital to tell them what was happening and they told me to go in right away. 

The events that ensued have been the most painful, traumatic, and heartbreaking moments that a mother could ever endure. I delivered my stillborn baby girl the next day. We buried her a few weeks later. I am actively grieving her every day and will continue to keep her memory alive in everything I do. I am not ready to think about becoming pregnant again, but I do know that I want a big family. So, this picture embodies the wait for my rainbow. My daughter Avani is my first rainbow baby, as I lost my first pregnancy to early miscarriage. My heart goes out to all the loss moms out there, let’s take it one day at a time.

Evelina wears the rainbow skirt. She sits on a wooden bridge with the skirt spread around her.

Evelina wears the rainbow skirt. She sits on a wooden bridge with the skirt spread around her.

Evelina wears the rainbow skirt. She stands on a bridge with her back turned. The skirt flows out behind her and she holds it out on both sides.

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