My Baby Had a Life-Limiting Diagnosis :: A Mama’s Story

*Trigger Warning: This post describes infant loss and a mother’s grief. 

2018. New Year’s Eve. I was three months into marriage. Ready to ring in the new year with a quiet night and some champagne. (I’m a fun one y’all.) My period was a couple of days late, so I decided to take a pregnancy test.

Positive. I cried tears of joy. You see, being a mom is all I have ever wanted in life. I wrapped up the test and gave it to my husband. There were more tears of joy and lots of celebration. We spent New Year’s Eve dreaming of the person our sweet baby would be.

A couple of months later, we told our families. We were through the first trimester. We were safe to share our news. The baby looked healthy. We always heard a strong heartbeat. There were more tears. More hugging. More laughter. And more joy. The most intense joy I have ever felt.

That April, we went to the anatomy ultrasound. Ready to find out the gender of our baby, mostly so we knew what color to paint the nursery. At this ultrasound, we were told that there was a problem with our baby. We had to wait two days (which felt like 1,000) to meet with a doctor and learn what was going on. We had another ultrasound and then were taken to a separate room to meet with a doctor. I knew this wasn’t good, but I was positive and hopeful. Until I wasn’t.

Our baby had a condition that was not compatible with life.

Bilateral Multicystic Dysplastic Kidneys. Our baby had cysts all over her kidneys, causing them not to function. This meant there was no amniotic fluid to help her lungs develop. We were going to lose our sweet baby. There was nothing that anybody could do for us. We got another opinion, but the news was the same. I felt like my heart had been ripped from my chest.

Instead of picking out a crib, we were going to have to pick a casket.

Instead of a “going home outfit,” we were going to pick a funeral outfit. To say we were devastated was an understatement. I spent months in bed, crying. I felt like I couldn’t breathe.

The doctors gave us options. We could terminate the pregnancy. We could induce early. Or we could carry the baby for as long as possible. The end result would be the same. No matter what decision we made, it meant coming home without a baby.

We wanted as much time with our child as possible. We wanted to make memories with this baby that was making us parents. As my pregnancy progressed, we knew that our chances of losing the baby were greater. But we still wanted to fight. We wanted to give our sweet baby every chance at survival that we could.

This was the most devastating, isolating time of my life.

I have a great husband. My family is incredible. I had friends that walked the journey with me and texted me comforting words at all hours of the night. I had support. Regardless, I felt isolated. I didn’t want to leave my house for fear that people would ask questions about my baby. I searched for any resource I could. And I found an amazing community of loss moms that helped me through what was both the hardest and happiest time of my life.

We were living in Roswell and traveled to Albuquerque for my appointments every couple of weeks. We met with every doctor possible, and we met with hospice. (I hate that there is such thing as hospice for newborns.) I was determined to carry my baby for as long as I could. Also, I wanted to make sure that my baby was comfortable for her entire life.

It became clear as my pregnancy progressed that our baby was breach. With no fluid, the baby would not move. The doctors recommended a natural childbirth but told us that our baby, who we now knew was a girl, would likely not survive. It was then that I learned how to be my own advocate.

We wanted to meet our baby girl while she was alive. We wanted time with her. No matter what it took, we wanted to create memories for as long as we could. While we knew it would likely only be a few minutes, we wanted that time. It was all we had. I pushed to have a C section and found a doctor that agreed. I was incredibly lucky to have such a great medical team in Albuquerque.

Ava Brienne Lobato was born on August 7, 2019 via C section.

We were prepared to only spend a couple of minutes with her, but she fought for two beautiful hours. We heard her cry, which was the greatest gift we could have ever received. Her daddy and I got to hold her, sing to her, read to her, kiss her sweet cheeks, and she even got to dance with her daddy. We made sure she knew how much we loved her. (I still don’t think I said it enough and would do anything to say it to her again.)

Ava was strong. She was beautiful. She was brave. And she was a fighter, just like her mama. She lived her life on her own terms. She defied all odds. Ava was a miracle baby in her own right.

She passed away very peacefully in her mama’s arms. She got to be held by her family. Thanks to some really wonderful technology, we were able to keep her in the hospital room the entire time I recovered from surgery. These are both some of the most beautiful and the most tragic memories I hold. I cherish every single one of them.

Leaving the hospital without Ava was the most painful thing I will ever have to experience. We all gathered, and everyone got to hold her one last time. My husband and I spent hours with her. When it came time to leave, I cried the hardest I have ever cried. Wailed. My heart was shattered. To be honest, it still is.

Being Ava’s mom is the biggest blessing of my life.

Then and there I promised myself that I would always share her story. I would give her life purpose. I would help support other loss moms. And I would let her story impact as many people as I could. Being a mama was always my purpose in life, but Ava brought a whole new meaning to what that meant.

We always talk about her. It is important to always speak her name. She is included in all family photos. Her little brother knows her name and goes to visit her grave often. We miss her desperately, every minute of every day.

But we fight to let her legacy live on.

The opinions expressed in this post are those of the author. They do not necessarily reflect the official policy or position of ABQ Mom, its executive team, other contributors to the site, its sponsors or partners, or any organizations the aforementioned might be affiliated with.