From the Heart :: Bennet Nordstrom

Writer Amanda Christmann Larson

Photographer Janelle Zeller

 

The thing about time is that everything can change in an instant. One minute, life is going along just fine, but the next moment can carry a blow that catches you by complete surprise and rocks you from your foundation. Most people have moments like this at some point in their lives, but when that blow strikes your child, the grief and pain cut like a scalpel, sharpened by the helplessness of knowing that, for all the child-proof locks installed, small hands held while crossing the street, and careful guidance given along the way, there is no magic story or song to make it better. All people can do is be strong and pray.

 

But this story is not about grief. It’s about triumph. And it’s about how one little boy’s will to live made a family and a community stronger.

 

One year ago, Bennet Nordstrom had just turned twelve years old. He’d spent his summer in the usual “boy” ways. He loved tennis, baseball, soccer, and running, and spent much of his time skateboarding and going to the water park with friends and his younger sisters, Grace and Emmy. Seventh grade was just beginning at Caurus Academy, and he was anxious to see his friends, but not so anxious to end his vacation.

 

The fall football season was about to begin, and Bennet went in for his sports physical. He had been a little sluggish at times, but his parents, Lisa and Jeff, thought perhaps he was going through the tiredness most pre-teens have as they grow. His brief physical showed nothing unusual, and the season began as normal. Like the other sports he played, Bennet gave football his all.

 

Two months later, though, he started having stomach pains and often didn’t want to eat. He was prescribed antacids for what appeared to be acid reflux, and at first, the pains seemed to go away. But as the weeks progressed, despite the medicines, Bennet’s pains became worse. Jeff and Lisa didn’t know what to think. They wondered if some of his complaints were a little bit of teenage drama; but then they started receiving calls from school that Bennet was missing far more class than usual because of his stomach pains. On December 15, 2010, Lisa picked up Bennet from school after receiving another call that he was very sick. His face was colorless and she knew something was terribly wrong.

 

Moments. They can cause your life to change course so abruptly that you can’t catch your breath. They can steal your words and flood you with emotions you thought you understood, like pain, grief and fear, but didn’t know how deep and consuming they could really be.

 

The emergency room doctors didn’t know what was wrong exactly, other than problems with Bennet’s gallbladder, but that didn’t explain some of his other symptoms. Four days later Bennet was transferred to Phoenix Children’s Hospital where he was diagnosed with dilated cardiomyopathy. His heart was weak and enlarged. It was the same condition that occasionally makes the news when seemingly healthy high school athletes fall over in what is termed “Sudden Cardiac Death.” Without serious intervention, the Nordstroms’ only son, whose ironic sense of humor and love for adventure had kept them on their toes since he was born, would be cheated of the chance to grow into the strong and caring young man they knew he would someday be.

 

“We never thought something like this could happen,” Lisa said. “We were just a normal family. Things like this always happen to somebody else. But it happened to us.” Lisa and Jeff arranged their lives in shifts: One parent would be at the hospital while the other made sure the girls made it to school and dance classes, and that all of their work in their home-staging business was completed. They were like two ships passing in the night. “We tried to keep things as normal as we could and still be there for Bennet,” Jeff explained.

 

The next step for Bennet was surgery to install a defibrillator/pacemaker, to keep his heart beating regularly. A defibrillator meant he could not skateboard, go on roller coasters, or ride on a tube in the water. His life would have to be much more calm and risk-free. It would be a big adjustment for this very active kid. After the defibrillator was installed, Bennet’s heart and body slowly recovered.

 

The Nordstroms were looking forward to a “new normal” with Bennet home and life resuming. Then disaster struck a second time.

 

On February 26, just four weeks after Bennet had returned home, he became very ill again and was rushed to the hospital, where he was diagnosed with RSV and a staph infection in his blood. The defibrillator had to come out – and Bennet was going to be put on the heart transplant list at St. Joseph’s Hospital. In less than three months, their healthy, smiling boy was now a gravely ill boy. His condition rapidly deteriorated. He was listless and had no appetite.

 

The family gained a support system in the community through their neighbors, AZHills Church, and other parents at Dynamic Motion Dance Academy, where the girls took dance classes. Family and friends from across the country sent out prayer requests for Bennet, and strangers sent letters and well-wishes from as far away as Japan, England, and Norway. Lisa posted prayer requests on Facebook when she could. “I have a poster in my closet that says, ‘Keep Calm and Carry On,’” Lisa said. “I looked at that poster every day, and that became my mantra.”

 

Bennet developed his own routine of coping. Each day, nurses and doctors scheduled his tests and treatments, leaving a block of time open from 4 o’clock to 5 o’clock each evening. During that time, no one entered the room or interrupted unless it was urgent. That little afternoon window was “Ellen Time.” Bennet tuned in to Ellen DeGeneres on television and, for an hour each day, forgot he was very sick.

 

On March 17, Bennet’s heart stopped. Two days later, it stopped again. Each time, Jeff watched helplessly as Bennet was revived by a team of doctors and nurses. The situation was nearly unbearable for the family. Bennet was mostly unaware of his surroundings. His sisters, Grace and Emmy, were not allowed in the hospital room with him because of the potential for infection. It was as if the family had been swept away in a tidal wave and could only focus on their next breath - their next struggle.

 

Then, a big miracle happened. Bennet’s doctors at St. Joseph’s Hospital had taken a chance and ordered an experimental device called a Berlin Heart. Custom-made for each patient in Germany, Berlin Hearts are classified as LVADs, or Left Ventricle Assistive Devices. They are attached to the blood stream on the outside of the body and take the place of the faulty left ventricle of the heart, ensuring blood reaches the brain and lungs. “It was amazing that the transplant team had that foresight,” Lisa said. On April 1st, Bennet went into surgery once again to receive the Berlin Heart. Afterward, Bennet exhibited a small amount of color in his face and fingers for the first time in weeks, and he was more alert and aware of his surroundings.

 

Two days later, on Sunday, April 3, Jeff, Lisa, the girls and Bennet were spending another quiet evening in Bennet’s hospital room when they learned that a heart might be available for transplant! The family was on pins and needles as they waited for confirmation that Bennet could receive the biggest gift he - and his entire family – would ever receive.

 

The heart was a match and at 1:47am on April 4, Bennet was wheeled into the operating room. By 8:30am, Jeff, Lisa, their pastor and his wife got to see Bennet with his new heart. For the first time in four months, Bennet was actually getting better instead of getting worse.

To meet Bennet today, most people would not notice anything out of the ordinary. He shakes hands and introduces himself. “I’m Bennet, and I had a heart transplant. What else do you want to know?” he grins. He will be on medication for the rest of his life, and he must be constantly aware of the potential for infections. Hand sanitizers are sprinkled throughout the house so that he and everyone else can use them when needed, and he must wear a mask in public places. His best friend Kyle hangs out with him at his house; the two trading in their skateboards for video games—for now.

 

Nearly three months to the day after the transplant, Bennet celebrated his thirteenth birthday in a celebration at Anthem Community Park with fireworks. All five members of the family were grateful for the opportunity to share a day that, many times over the last year, could have had a very different outcome.

 

“I always knew he would make it,” said Lisa. “I knew he would survive and do good things with his life.”

 

Bennet has started an organization called “Bennet’s Heart Posse.” He passes out wristbands and encourages people to become organ donors. He also encourages healthy eating habits (obesity is the number one contributor of heart disease), and he wants sports physicals to include potentially life-saving EKGs. He has started his own blog and website, www.heartposse.org. “I’ve spoken at one school already,” he said confidently.

 

According to the National Heart, Lung, and Blood Institute, about 50,000 Americans (or 1 in 5,439) have cardiomyopathy. Of those, the majority are adults who have other complicating factors of heart disease. But for a small number of children, like Bennet, the condition is either hereditary, caused by complications from drug therapies (such as cancer drugs), or caused by viral infections.

 

The Nordstroms don’t know exactly what caused Bennet’s condition, but they now realize there were warning signs they might have recognized sooner. Bennet’s fatigue while playing was one sign, as were his stomach pains. When the heart is not working well, the brain delegates limited blood flow to the most essential of organs. His brain had re-routed his blood supply away from his stomach in order to make sure his brain, heart, and lungs had the oxygen they needed – thus, the terrible pains in his stomach.

 

Another alarm bell could have rung during his sports physical. Most sports physicals are brief and not especially in-depth. There is a growing advocacy for the routine use of EKGs (also called ECGs) in sports physicals, which can show irregularities for some children. In a study included in the Annals of Internal Medicine in March of last year, doctors from Massachusetts General Hospital and Boston and Harvard Universities found that the number of students diagnosed with potentially life-threatening heart conditions doubled when an EKG was used.

Bennet’s prognosis is good, and, as Lisa says, the family is adjusting to a “new normal.” Their eyes have been opened, though, and they are anxious to see what life brings next. After what they have been through, they know that together they can handle anything.

 

Bennet’s diagnosis before a major crisis was a stroke of luck that made a huge difference, but the gift of life given by another grieving family truly saved his life. Today, there are 110,541 people waiting for organ donations. Every ten minutes, another name is added to the list. Eighteen people die each day while waiting for a transplant. Organ donation is free, but you need to register. Visit www.donatelife.net to register. It’s quick. It’s easy. And it saves lives.