One father's story: How a heart defect gave meaning to my mission


By Erik Halvorsen

I have a difficult time explaining what I do for a living as Director of Technology and Business Development for Children’s Hospital Boston’s Technology and Innovation Development Office.

Friends and family know I have a PhD in neuropharmacology, but I don’t do research. They know I work at Children’s, but I don’t see patients. They hear I work with patents, but are confused because I never went to law school. I tell them about companies I help start even though I’m not a venture capitalist. In reality, I’m whatever I need to be, and I do whatever I need to do to meet one goal: turn Children’s laboratory and clinical research into products that can benefit patients—including my daughter.

When I was first interviewed for my position, I met with a number of amazing doctors. I can still clearly remember my first meeting with Jim Lock, MD, the chief of Cardiology. About 10 minutes into the interview, he stood up and walked out of the room and motioned for me to follow. As I attempted to continue our conversation on the move, we turned a corner and I suddenly found myself in one of the rooms where they treat children with incredibly complicated heart problems. He turned to me and said, “I just thought you should see what I do for a living.” Little did I know that in less than a year, I’d be back in one of those same rooms with my own daughter as she fought for her life while being treated by doctors I would come to know as colleagues.

I joined Children’s in 2007 to translate research into products through a complex process of scientific evaluation, market analysis, patenting, contracting and product development. These products range from new diagnostic tests for diseases to the devices, drugs and therapies needed to treat them. A few weeks after I started work, my wife and I learned we were expecting our first child, and the news brought the simultaneous feelings of joy and fear that first-time parents are all too familiar with. The next few months were busy, working long hours at the new job, house hunting and going to appointments with my wife. We were your typical first-time parents: We read Baby 411 and The Happiest Baby on the Block, talked to everyone we knew who had a baby, went to (and walked out of a few) new parent classes and asked every question we could think of. My wife adopted such a healthful eating and exercise regimen that I felt the need to be less healthy just to keep the universe in balance. I gained 20 pounds. It was busy, but great—until a doctor’s appointment changed everything.

During a routine ultrasound, we learned that our baby’s growth had slowed dramatically with no discernible cause. After a barrage of tests and a referral, my wife came over to Children’s to get a better look at our baby’s heart. It revealed several holes between the chambers of her heart and a potential narrowing of her aorta, the main artery that supplies the body with blood. There was nothing to do but wait and see how our daughter would do after she was born.

Dylan Mykel Halvorsen entered the world by C-section on May 28, 2008, five weeks prematurely. She was 4 pounds and 1 ounce and she was amazing. Beautiful and fragile, you could immediately see the strength in her. She spent the next four days in a local Neonatal Intensive Care Unit before her cardiac issues necessitated her transfer to Children’s. I remember sending an email to Jim Lock around midnight when Dylan was transferred to our Cardiac Intensive Care Unit, letting him know that she was on her way to his team. He wrote me back that night, and I knew that she was in good hands.

Dylan was very sick. Her cardiac issues were getting the best of her and she was going down hill quickly. Something needed to be done, and fast, but every choice had risks—some potentially catastrophic. Teams of doctors and nurses huddled, constantly reviewing the results from her latest tests. Running out of time, a decision had to be made. Her first procedure would require that an adult coronary stent be placed in her aorta, opening it up to reduce the pressure and the backflow of blood through the holes in her heart. Jim Lock performed the procedure himself and it was a success; he had bought her some time. A few days later, Dylan was ready for something no parent wants to hear: open heart surgery. This time Pedro del Nido, MD, chief of Cardiac Surgery and another member of Dylan’s “Dream Team,” was up. With amazing precision, he was able to use specially designed patches to close tiny, one- to two-millimeter holes in Dylan’s heart—which itself was no bigger than a walnut.

She had lost weight through the procedures and was down to 3.5 pounds. When we saw her in the recovery room, she was more tubes, wires and beeping machines than little baby. My wife had to leave the room immediately. At first, I just stood and stared. Then, unbelievably, I took pictures of her. Not so much because I wanted to remember this moment, but because I wanted her to remember it when she grew up to be a pain-in-the-butt teenager rebelling against her parents. It was meaningful, because I knew for the first time that she was going to get the chance to be a teenager.

Dylan went home in July. She’s thriving and is becoming, in this father’s unbiased opinion, one of the cutest and happiest little girls you will ever see. Her future is unknown, as are all of ours, but she was given a chance at a future thanks to an amazing team, including Jim and Pedro—two inventors I now meet with to discuss their ideas for new devices similar to the stent and tiny patches that closed Dylan’s heart.

Children’s is full of inventive doctors, like Dylan’s. They are not only on the front lines of patient care, they also constantly strive to find better treatments. That’s why it’s my job to be whatever I need to be, and to do whatever I need to do, to help turn these innovations into the reality of new therapies and devices that can help the next kid like Dylan—a kid who just needs some help along the way before she can have a chance to be a kid and, in due time, grow up.

Have you had a similar experience as a worried parent? What do you think? Let us know in the comments section below.