Liam’s Story – United States

My first pregnancy was textbook until it wasn’t.

I always knew I wanted to be a mom, and carrying my son made me feel like I’d finally found myself.

I adored my growing belly, and feeling his kicks sent me over the moon. We had a “perfect” anatomy scan at 20 weeks, and before I knew it, we were in the third trimester. 

Two days shy of 31 weeks, I flew to Atlanta for my baby shower, where I spent my first Mother’s Day surrounded by some of my favorite mothers. It was a truly magical day—the day before my world turned upside down, the last day I knew life without trauma and death.

I remember as I boarded my flight home that night, the pilot said, “Welcome,” smiled at my bump, “both of you!” I was so happy to finally be recognized as a mom. Baby didn’t kick during takeoff like he did on my first flight, but I didn’t think much of it. I texted Kevin that I was having Braxton Hicks contractions, which made him nervous, but I felt excited, reassuring him it was “just my body getting ready for labor.”

Exhausted, I went straight to bed when I got home. Baby didn’t kick like he normally did at bedtime, and, actually, he hadn’t been moving…all day? I remembered him kicking a little the night before, but that’s the last I could recall. I thought it was fine; I was out of my routine and tired, so he probably was, too. One of my midwives had told me previously it’s ok if baby’s movement decreases as long as it returns to normal. (I know now any change in pattern can be a sign baby is in distress.) And this time, he never returned to normal.

The next morning, baby still wasn’t moving and I felt really run down. I got in the bath to see if that would wake him up. Nothing. I drank a glass of cold water. Still nothing. My birth center had me come in to get checked. I was scared but never once thought he might be seriously ill or dead. A nonstress test showed his heart rate was ok but with minimal variability and no accelerations. The midwife told us, “I’m sure everything is fine, but you should go to the hospital L&D for extended monitoring to be safe.” I was annoyed because I wanted to go home and take a nap.

But a few hours later, a doctor was apologizing to us. In shock, I heard: “Nonreactive BPP…severe hydrops fetalis…we don’t know why…helicopter transport to the children’s hospital…likely cesarean delivery.”

Kevin went ahead since he couldn’t ride in the helicopter; we didn’t have family in the area, so I waited alone. I decided baby boy needed a name, one with meaning. Liam immediately came to mind, and a quick search told me it meant “strong-willed warrior and protector.” Perfect. I remember thinking he would need all the strength he could get for what was sure to be a difficult battle ahead—but I had no idea.

We’re still not completely sure what happened, but no helicopter showed up. I was transported in an ambulance, but less than an hour after arriving at the children’s hospital, Liam’s heart rate dropped, and they rushed me back for an emergency c-section. I was terrified, visibly shaking and crying. I’ll never forget the nurse who hugged me tightly, reassuring me, while the anesthesiologist put a needle in my back.

I didn’t feel the cut, but I could feel them tugging and tugging at my body. I was nauseated and vomited all over myself. Kevin could see rags soaked with my blood. It was controlled chaos. I felt the weight of Liam as they pulled him out.

At 9:15 p.m. May 14, 2018, my first baby was born—silently. I asked if he was ok, but no one answered. I barely remember it, but someone eventually came to tell us they had resuscitated Liam after 10 minutes of chest compressions. Once I was stitched up, they wheeled me past Liam. He was perfect but tiny, swimming in the white hospital hat on his head—the only piece of clothing he ever wore.

After what felt like forever, they took my bed to Liam’s NICU room. I was so proud of that beautiful boy, my baby. This was far from the natural birth I’d dreamed of, but I was so happy Liam was finally here. I was oblivious to the fact he wasn’t moving, making any sounds or opening his eyes. I could have laid there looking at him and holding his hands forever.

The next two days in the NICU are a bit of a blur. There are hundreds of possible causes of hydrops—accumulation of fluid in two or more fetal compartments—and no answers in Liam’s case, which made it extremely difficult to treat, even in one of the country’s top NICUs. My mom says I focused on the good news, and the bad went in one ear and out the other.

On May 15, I held Liam for the first time. I think the only reason I was allowed to hold him so soon was because they knew it might be my only chance to hold him alive. I can still remember the weight of him on my chest, all 4 pounds and 12 ounces, and the high I felt finally holding him. Tears streamed down my face—happy tears and sad tears because I was coming to terms with his poor state.

Suddenly the respirator started beeping. A nurse pulled him from my arms and placed him in his bed, and the room quickly swarmed with people in scrubs. My family and I stared helplessly as they furiously tried to save my baby’s life.

“Do you want us to resuscitate?”

Kevin and I looked at each other and knew, should Liam’s heart give out again, we needed to let him go. Sobbing, I told them, “No.”

Thankfully, they were able to stabilize Liam, and we got another day with him. Seeing my baby literally fight for his life changed me, though. It was hard to deny just how sick he was. I didn’t want to leave his side knowing how quickly things could go from good to bad—how quickly I could go from having a NICU baby to a dead baby.

That night Liam’s nurse did convince Kevin and me to rest in one of the parent sleep rooms. “Tomorrow will be just as hard, and you’ll need your energy. I promise I’ll come get you the second something changes.”

Nothing changed, and we managed a few hours of sleep, no clue just how right that nurse was. That morning, we received the devastating news Liam had little to no brain function. Combined with multiple organs failing and no answers as to why any of this was happening, the doctors gently suggested we consider comfort care. We knew it was time to stop fighting.

Our parents had flown in the day before, but we decided to spend Liam’s last hours just our family of three. Furniture blocked off the hallway to give us privacy as we said goodbye. I watched my husband hold his son for the first and last time; I’d never seen him so broken.

I told Kevin I needed to be the one to hold Liam as he dies; I thought he might be scared, and I wanted him to feel the comfort of his mother’s arms as he died. I held Liam for the second time knowing it would be our last. His body was small and perfect yet broken and failing him. I remember asking Kevin over and over again if we were doing the right thing—some part of me pleading for justification to keep him alive, though I knew we needed to let him go. I told the doctor we were ready.

Liam’s body held on much longer than any of us anticipated. We held his hands and kissed his head, telling him we loved him and that he didn’t need to fight any longer. When the doctor pronounced him dead, I asked her to carry him to the hospital morgue because I couldn’t do it myself. She swaddled him in a blanket and left.

Over the next few days we planned a memorial service and picked out the tiniest of urns—certainly not an outcome I ever imagined possible when I first saw that positive pregnancy test.

Five months later, we were surprised with another positive pregnancy test. We were happy for the first time since Liam died and terrified since the autopsy had been inconclusive. Six weeks later, we got a life-changing genetic diagnosis: Liam had Generalized Arterial Calcification of Infancy (GACI), an ultra-rare recessive disease, and there was a 25% chance our second baby could have inherited it, too.

We were encouraged to do genetic testing and opted to wait until 16 weeks to do an amniocentesis, which carries less risk than the CVS test done in the first trimester. We spent eight weeks not knowing whether our baby would face the disease that killed our son and reading limited medical literature. Prognosis was grim: Most did not survive six months. We found ourselves asking whether we should terminate our very wanted pregnancy to save our daughter from suffering the same fate as her brother.

Thankfully we connected with Dr. Carlos Ferreira with the NHS, one of a handful of doctors familiar with GACI. He provided context and gave us hope the recent introduction of prenatal treatment could give our baby a much better chance than the literature suggested. I also spoke with Anne Van Wyk—a mother who had lost two sons to GACI and had a surviving, thriving daughter; it was so helpful to talk with another mother who really understood what we were navigating. We decided, no matter the diagnosis, we would fight. Around 17 weeks we finally caught a break: Our daughter did not inherit GACI!

Even with this news and a normal anatomy scan, pregnancy continued to be incredibly challenging. Because, in our experience, pregnancy ends in death. I spent just as much time thinking about my baby dying as I did dreaming of her life. I obsessed over her movements every day, always wondering “if this was the end.”

On June 17, 2019, I gave birth to our daughter Gemma Clair. Leaving the hospital with our baby was a bittersweet moment of which only other loss parents truly understand the weight and complexity. Parenting has brought its own challenges, living the moments we will never get with our son, seeing how she looks like her brother. Every day we must accept, again, this is our reality:  We hold one child in our hearts and one in our arms.

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