Heart Transplant and Dilated Cardiomyopathy: Super Silas’s Story of Hope

We recently had the pleasure of meeting Chris and Amanda Huffman and were so impacted by their love and care for each other and their rock solid faith. When their world was turned upside down by a life-threatening diagnosis for their son, they were truly able to see God in the storm. Their family is a beautiful example of the power of hope, and we are honored to share their story with you.

Dilated Cardiomyopathy Discovered

Silas’s story begins rather abruptly in August 2013 on the day he turned four months old. Amanda had noticed that his breathing seemed off — enough so that she decided to take him to their pediatrician. Within minutes of seeing Silas, the pediatrician sent them to the closest urgent care. The pace of the day picked up as they hurried over. Once there, they were quickly taken back, and the nurses went into a frenzy as they evaluated Silas. Amanda began to panic as her seemingly normal day was turned upside down.

The staff at the urgent care knew that he needed immediate intervention to survive, so Silas was life-flighted to Children’s Healthcare of Atlanta at Egleston. Upon arrival at the hospital, Amanda was told that Silas’s heart was failing, and in order to keep him alive, he was sedated, paralyzed, and put on a ventilator in the Pediatric Intensive Care Unit (PICU).

Soon, the doctor came in to explain more of what was happening. Silas had been diagnosed with dilated cardiomyopathy, which resulted from a genetic heart defect. Often times this condition never results in a problem, but his case was Amanda and Chris’s worst nightmare.

While all of this was happening, Chris was on tour with his band in Alabama. Oddly enough, he had a sense earlier in the morning that something was different about this day. He couldn’t shake the feeling and ended up telling a couple of his bandmates about it later in the day. When Amanda called him early in the chaos of the events unfolding, Chris immediately knew that he wouldn’t be playing that night — he needed to get home as fast as possible.

The band prayed for him, for his family, and for little Silas, and Chris jumped in the car to get to the hospital. That drive to Atlanta — which seemed like an eternity — was excruciating. The weight of the unknown and the stress of not being with Silas seemed crushing. Even through the drive, though, Chris recalled how meaningful it was to know that his friends and bandmates were praying for and supporting him.

Fighting for Hope in the CICU

Within a week of his arrival at Egleston, Silas was transferred to the Cardiac Intensive Care Unit (CICU) and put on the transplant list. His survival depended on a new heart.

Throughout his stay in the CICU, Silas was put on a myriad of IV medications to keep his heart beating. Eventually, the doctor informed Amanda and Chris that Silas would need to be put on a Berlin Heart, which would do the job of the left side of his heart via an external pump.

When the decision came to have the procedure done, the doctors weren’t confident that Silas would be able to handle it. Chris and Amanda knew that Silas was a fighter, though. Even the nurses had commented throughout the treatments about how strong Silas was, and he had been officially dubbed “Super Silas” with all the superman paraphernalia to go along with it.

Silas made it through the Berlin Heart procedure and continued to fight as he waited for a new heart.

Chris and Amanda’s daily life was characterized by the unknown of whether a donor heart would come and how long Silas could survive the wait. They drew strength from their incredible community of friends and family that supported them. And they also held onto their faith. One of the things that carried them through the toughest days was a verse that particularly spoke to them:

“My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” - Psalm 73:26

This verse was an anchor for their souls, giving them hope. Though Silas’s physical heart was failing, God was giving him the strength he needed moment by moment. It was that strength of heart that carried Amanda and Chris through the toughest days.

Still, waiting and watching their son suffer wasn’t easy. Chris described days when he simply didn’t have anything left for God. He didn’t have anything to offer or anything to give. It was in those moments that God tended to show up in surprising ways to remind them of His presence and faithfulness.

On one such occasion, Silas was having a particularly rough day, and Chris went out to the waiting room to clear his head. To his surprise, a stranger soon greeted him and proceeded to explain that they also had a son named Silas. As this visitor continued to share encouragement, Chris called Amanda to come out to the waiting room. The visitor then gave Chris and Amanda a bear for Silas with a recorded message. Amanda nearly fell over when she heard it — it was the words from Psalm 73:26. The words on the recording washed over their souls on the toughest of days and was a reminder that God was with them.

In each day of the waiting, they faced the very real mountain in front of them with faith. Amanda remembered, “The hardest part was putting Silas at the feet of Jesus and trusting that no matter the outcome of the situation that God was in control and that He would get us through.”

The Heart Transplant Arrives

After 100 days of living at Egleston, Chris and Amanda finally received “the call.” Earlier in the day there had been a donor call for another patient, and they had essentially written off the day since two hearts transplants in a single day just didn’t happen. Now, almost unbelievably, they were prepping Silas for surgery and waiting for the heart to arrive.

Chris reflected on the day, recalling how surreal and bittersweet it was to receive the news and wait for the surgery. He knew that the very heart that he hoped would save his son meant that another family was going through intense grief. They soaked in the gravity of the moment and found incredible peace in the comfort of the Lord’s presence with them.

Super Silas came out of surgery well. The first time Amanda saw Silas after surgery, she remembers how amazed she was that Silas’s skin had so much color. She had been so used to seeing his grey skin tone, that it had become the norm. His now healthy and bright complexion marked a new season for Silas and for their family. They stayed on at Egleston for 10 days to recover from the surgery and were then sent home.

Life After the Heart Transplant

Today, Amanda describes their life as “busy, scary, wonderful, and full of love and hope.” The most obvious remnant of the entire experience for Silas is the partial paralysis on his left side from a stroke that they believe happened during the surgery. As a result, Silas has a variety of therapy visits throughout each week. He also still has a G-tube to supplement his liquid intake.

Though he doesn’t have much use of his left arm, Silas is full of energy, laughter, and joy. He started walking at three years old, and Amanda and Chris describe him as a walking example of hope and strength. He is “Super Silas,” after all!

In addition to the medical support Silas still needs, Chris and Amanda know that he will still need another heart transplant one day. Though that may seem like a sentence on their life, Amanda explains that, “We live everyday as if we don't have a tomorrow because every day with Silas is a blessing ... We live everyday to the fullest.”

Now they are a walking example of hope as they share their story and encourage other families in the CICU at Egleston. We asked what they would tell someone facing a similar diagnosis to Silas, and here’s what Amanda said: “I would tell them: Your child is more than their diagnosis and their diagnosis does not define who they are. Silas has no idea what he has been through, and he is the happiest full-of-life boy you will ever meet. Embrace the diagnosis, but do not let it define you.”

After spending some time with Chris and Amanda, we we amazed by their gentleness, their care for each other and their children, and their foundation of faith. We were also encouraged by their transparency and willingness to talk about the toughest and darkest days. Amanda’s closing thoughts are saturated in hope: “This experience has taught me that our only hope is in Jesus and that everything we do should point others to Him. I could have chosen to turn away from God and blame Him for everything. Instead, I chose to run to Him and allow Him to carry me through this struggle.”

In addition to being a strong husband and dad, Chris is also a musician in the band Casting Crowns. Their latest album, The Very Next Thing (released September 2016), is filled with anthems of truth that point to a great and enduring hope.