A Tiny Heart after God’s Own
by Judy Bettendorf as told to Brooke Keith
Ten fingers, ten toes. (My husband, Pete, knew; he counted five times.) Feathery soft fuzz atop her head. We’d never seen anything quite like her. Our daughter, born March 3, 2003, was beautiful — a perfect example of God‘s handiwork. Her name would be Lisa. That was it — beautiful and perfect, just like her. We later discovered that her name means “consecrated to God.” We never knew until the coming months how true that would be.
The next two weeks at home were wondrous. Just like any tiny newborn, Lisa slept often, cried when she needed comfort, and loved to be cradled in the arms of her parents. Still, as the days passed, I began to get a funny feeling that something wasn’t quite right.
“You’re probably just exhausted, Sweetheart,” Pete said kindly.
“Yes, dear. Get some rest,” my mother-in-law agreed. But I wasn’t exhausted, and while nobody else understood my hunch, I knew I had to take little Lisa to the emergency room — and soon.
Holding her in my arms, I hoped every whoosh of that blue hospital curtain would be the doctor with news. Finally, he walked in and said something that changed our lives.
“Mr. and Mrs. Bettendorf,” he said solemnly, “Lisa has what we call ALCAPA. It’s a rare heart defect in which the coronary artery grows from the pulmonary artery, instead of from the aorta. I’m sorry.”
My stomach sank, and we both began to cry. At that moment, I realized Lisa wasn’t the only one with a broken heart.
Lisa’s grave condition would require emergency surgery; however, the local pediatric cardiothoracic surgeon was out of town. Our family rushed over to a larger hospital for immediate repair of her tiny heart.
After the surgery, doctors assured us that Lisa was improving, though we all had our doubts. Lisa’s chest lay open for five days due to swelling and rising blood pressure. As a result, she suffered two strokes — one on the right side of her brain and one on the left.
How can this be true? I thought. Just like every mother, I once thought something like this could never happen to me. But looking at my child in her hospital bed, tubes in her chest and nothing but a diaper on, I realized this was reality.
Once we returned to the local hospital, it was evident that Lisa was fading away. Her body was exhausted from all it had been through. She would need more surgery.
Something told us that help wouldn’t come close to home in Charlotte, North Carolina. Pete and I would have to search for the perfect place — no matter how far — to save our little miracle. We knew it wouldn’t be easy. It was such a rare surgery in such a small person.
At this point, I made a promise to God: If He would just save Lisa, I would tell our story to everyone we met. We would be a living testament to God’s faithful promises.
Just weeks after Lisa’s birth, we began researching the Internet for somewhere, anywhere, that had experience and success with mitral valve surgery in an infant. We narrowed it down to the top two hospitals with the best cardiac units in the country: Philadelphia and Boston. Wanting the best care for our daughter, we chose the Children’s Hospital of Philadelphia.
On April 12, 2003, Lisa and I boarded a jet to Philly; Pete was already there waiting for us. It became clearer that God had been working behind the scenes for our family.
We discovered that the man who would become Lisa’s doctor had a personal link to similar situations: His wife had been born with severe heart and lung defects. As a small child, she herself had had two heart and lung transplants at the same hospital. Philly was a city filled with over a million people. It wasn’t a coincidence that this one man, Dr. Craig Greene, had become this woman’s primary doctor during her extended stay. My heart rejoiced for Lisa’s, and somewhere deep inside I knew we were not walking alone.
The following week Dr. Tom Spray repaired Lisa’s mitral valve and atrial septal defect. Within days of the surgery, Lisa was smiling. “And . . . she smiles,” I whispered tearfully over her bed. We all smiled — even the nurses and doctors.
Pete and I returned home with Lisa after being away from our other three children — David, Rachel, and Christian — for two long months. The kids all grabbed on to our legs, and we leaned down to show them their beautiful baby sister.
Due to severe reflux, Lisa still required a feeding tube upon returning home, though it was later converted to a much less complicated system. Our family praised God for even the pains of a feeding tube, knowing that we could be sure she was receiving all the proper nutrients to keep her strong and thriving. Lisa also required round-the-clock nursing care. Medicines were administered and feeding tubes ran until 4 a.m. — exhausting. Still, Pete and I describe these times as a labor of love.
The following year, doctors found a leak in Lisa’s mitral valve, so our daughter was once again flown to Philly for surgical repair. The surgeons had hoped to only repair the valve; however, she needed a valve implant instead to replace her damaged valve and muscles. Due to the implant, Lisa would need to be on blood thinners the rest of her life.
We’d been through strokes, open-heart surgeries, feeding tubes, and the pain of nearly losing our child. Still, in all this madness, something assured us that everything would be all right. The same voice had urged me to the ER that night and had given me strength to keep pushing forward.
When we faced those days and felt so alone, God said, “You are never alone; I walk beside you. I Am the voice that gave you warning and the voice that gave you comfort.” I knew He was. While I can’t explain it, something changed and I knew there would never be a situation God would not rescue us from. We continued to lean on God, trusting Him to keep His promise.
And in true God-like fashion, He did. Lisa hasn’t required nutriment via her feeding tube since 2004. In fact, she now relies more on hamburgers and chocolate cake. What once was a fading infant lying on an operating table is now a vibrant young girl, filled with life, character, and sunshine. Just one look at her sweet smile holds no clues to all she’s been through.
While God kept His promise, we have kept ours, too, telling everyone about what He has done for our family. In return, all who listen have no doubt that God still performs miracles even today. On our family’s Web site are the words of Psalm 34:19 posted up front: “Many are the afflictions of the righteous: but the LORD delivereth him out of them all” (KJV).
While Lisa still lives with some blood flow difficulties and a size deficiency in her abdominal aorta, God continues to assure us that He is faithful. We are living proof that God is closest to us in times we fear He is furthest away. We are a walking testament to the promise that He heals broken hearts in every sense of the word. All we have to do is believe.
Recognizing Heart Defects in Children