Eli’s Story

by Dr. Matt & Amanda Roberson

Several years ago, my wife Amanda and I had been blessed with beautiful twins, Jack and Sadie. A healthy son, a healthy daughter, a happy marriage and a joyful home are wonderful things to enjoy. We eventually decided try to have another child. Amanda’s first pregnancy was a little anxious due to the threat of premature labor and other factors mostly related to a twin pregnancy. We both felt like we had more room in our hearts for another child and on some level, I think she wanted to have a ‘normal’ pregnancy (more about that later). Our children were joyous and beautiful like a Pinterest photo or the picture that comes with the frame. Our home was full of adorably mispronounced words, little feet running to welcome me home from work, preschool art, and reading time. Life was good.

As is usually the case, Amanda knew before I did. I came home to see Jack and Sadie wearing shirts that said “I’m a Big Brother” and “I’m a Big Sister” respectively. Amanda’s excitement had obviously spilled over to them. They ran wide eyed around our kitchen not fully grasping what all the excitement was about. We were over the moon!

At about 18 weeks, Amanda went to see her doctor just to have a question answered about Eli. Since it was an unscheduled visit, I was at work rather than being with her. Normally she wouldn’t have seen her doctor again until 20 weeks for the ‘anatomy’ ultrasound. The ultrasonographer kindly offered to try the anatomy ultrasound early since it was so close to 20 weeks. Who wouldn’t want an extra peek at their growing baby, right? As the gray and black of the ultrasound images flashed across the screen, the ultrasonographer’s face turned white. “I’m going to go get the doctor” she offered as she awkwardly left the room. A doctor then hastily entered and performed his own scan, and his faced paled as well…

In the midst of a routine workday, I received the panicked sobbing unintelligible phone call from my sweet wife that changed everything. All I could make out was that something was wrong with Eli. Between sobs of anxiety, Amanda said something about his heart being on the wrong side of his chest. I ran out the door to my car and raced to be by her side. As a surgeon, my mind raced as well. I desperately ran through possible causes of his heart being on the wrong side of his chest and prayed for God to comfort Amanda and protect her and Eli. When I finally reached her side, we embraced, she cried, and I wanted to say everything was going to be fine. The face of the ultrasound technician who had waited with Amanda made me wonder if that was true.

We were whisked up to the “High Risk OB” or “Maternal Fetal Medicine” office. When we arrived, they already knew why we were there. At this appointment and every one that followed, all involved knew who we were and why we were there. That may sound personal and reassuring. In reality, it is a terrifying commentary on the severity of one’s situation. There’s a saying in Healthcare that you never want to be an interesting case. The MFM doctor performed yet another ultrasound and told us that Eli had a mass called a CCAM lesion in his chest. It was shifting his heart to the right.

Then she said most people would terminate the pregnancy.

The idea of a ‘fight or flight’ response was nothing new to me. I could tell you lots about the physiologic basis for it. Nerves, hormones, and organs all get cranked up to respond to a threat. I thought I had felt it before, too. Up to that point, I had not. Rather than perceiving that we had a decision to make, my body only knew that the life of my child had been threatened. In any other place, at any other time, if someone had suggested killing part of my family to solve a problem I would’ve acted with unbridled force. Yet here in this sterile office environment, that’s exactly what had been proposed. My pulse raced, my breathing quickened. Hair stood erect on my neck and veins pounded in my spinning head. Every fiber of my being wanted to physically neutralize this threat. The very person we came to for help had suggested the unimaginable.

As calmly as I could muster, I explained to the doctor that we would never consider abortion or speak of it again. From there, she suggested that we return in 2 weeks to have another scan and check things again.

We left broken. In separate cars we drove home. If I had it to do over again, I would drive Amanda home, but hindsight is 20/20. Once home, we each assumed our default roles. She cried. I intellectualized. I scoured every imaginable source for data. A few of my medical friends had heard of CCAMS but nobody had ever actually seen one. What I found wasn’t encouraging. There was a chance Eli’s heart would simply fail from being compressed. In an amazing testimony to a mother’s love, there was even a chance that Amanda’s heart could fail as well. Called “Maternal Mirror Syndrome”, experts do not know how or why this occurs. Now instead of one person I loved being in peril, there were two. Thoughts of a life raising Jack and Sadie without the Mother and Wife that I love absolutely terrified me. To make matters worse, the return appointment should’ve been in a few days—not in 2 weeks. Even the tiny crumbs of confidence I had in the MFM doctor were eroding. In the heart failure scenario, the odds of Eli dying was 100% without surgery. Open fetal surgery (literally opening Amanda’s womb, removing the mass from Eli’s chest and putting him back) carried a 50% risk of death for him.

As a surgeon there is an essential confidence necessary to be able to put your hands inside someone’s body and fix what is wrong. Let’s be honest—who wants an insecure surgeon? The confidence that allows me to do my job well can insidiously evolve into a form of pride in fixing someone else’s problem. Now at the end of myself, I lay broken. My pride exposed, I was utterly incapable of protecting my wife and child. Amanda was lost in fear and anxiety from the whiplash of being jerked out of a happy pregnancy and into a seemingly impossible situation.

And we prayed. Brokenhearted and frozen with fear, we prayed. As we grew increasingly aware of the long odds Eli faced, we identified with the Abraham and Isaac story in the Bible. We prayed that God would save Eli from this danger. We had to accept that God was sovereign even if He didn’t choose to spare us from our worst fears. Eli’s condition was news to us but not to the God who formed him (“I knew you before I formed you in your mother’s womb” Jeremiah 1:5)

At 19 weeks we went to Philadelphia to see a special team at the Children’s Hospital of Philadelphia. We had practically every test a pregnant mom and baby can have. And his 19 week body was beautifully complete. We saw a mind numbing array of world class medical providers who do things better than anyone else in Healthcare for babies. We were overwhelmed by the fact that they not only had seen CCAMS before—they care for children with them every day. There was one resounding consensus—they were all appalled that abortion had ever been proposed for Eli.

We left Philadelphia with a plan. Amanda would have ultrasounds twice a week in Greenville, SC and fly to Philly every two weeks for testing. If things got worse, Eli would need the Open Fetal Surgery I described before. If things got better, he would need surgery at or shortly after birth to remove part of his lung. And that became our new normal. My brave pregnant wife became a professional traveling patient. Car to airport, fly to Philly, cab to hospital, cab back to airport, fly to Greenville, car back home. All in ONE DAY. Pregnant.

Gradually our desert of despair was watered (and eventually flooded) by prayers and love from all around us. As we looked less inward and more toward the God who was granting us peace and hope, things seemed a little less bleak. Almost daily, strangers I met told me they were praying for my family. We still cried. A lot. And it was hard. Really hard. I ‘ugly cried’ a few times at work when someone would ask about Eli and Amanda.

Early on, we hung breathless on each measurement that indicated Eli’s status. Over time, we let go a little and started to lean more on the sovereignty of God. And bit by excruciating bit, Eli’s heart moved back to where it should have been all along. A wise friend observed that “Matt, when your heart moved to where it needed to be, Eli’s did too”.

Eventually it was decided that Eli could be born in Greenville. And he was. I’m convinced that everyone in anesthesia, OB/GYN, pediatrics, and neonatology knew who Amanda and Eli were before they hit the door. Shortly after his birth, I invited the MFM doctor we met first to come hold Eli. She politely declined.

At 10 weeks old, we went back to Philly and the amazing team at Children’s Hospital. On a Tuesday morning, we faced the hardest physical test of all. We handed Eli over to an OR team to remove half of his left lung. He recovered amazingly.

Today Eli is 7. If I can say so without sounding braggy, he is awesome. If you ask nice, he’ll probably show you his scar. He can’t always remember which side it’s on, so be patient. Don’t ask him if he can run fast unless you want to race—and you’ll likely lose. He has normal lung (and everything else) function. He knows that the people in Philly took care of him. We have even been back to visit a time or two. More importantly, he knows that God blessed him and healed him.

Despite being the first CCAM patient we know of in this area, Eli hasn’t been the last. We have met a few other families whose babies have had the same diagnosis. Sadly, not all have been able to celebrate a victory like ours. But none of the families we have met have elected to abort their children. And that is our prayer: Hear our story. Meet our family. Play with our children. And then consider that the flippant, ignorant advice given to us at 18 weeks could’ve killed his young body before it ever breathed air or was held by loving hands. I challenge anyone to see the images we saw of Eli at 18 and 19 weeks and then hold to the belief that he wasn’t a human life.