Mighty Blog

Wisconsin boy overcomes tumor inside heart

by Kylah Eckes

Three-year-old Tara was excited to become a big sister. Cole was perfect when he was born; he had beautiful skin, bright eyes, and long fingers and toes.

He was perfect.

Little did we know, there was something imperfect about our baby boy.

When Cole was 12 weeks old, he had a funky cough, so I brought him to Essentia Health-Hayward (Wis.) Clinic to see our family physician. After reviewing the symptoms, our doctor ordered a chest X-ray to determine the problem. Of course, I cringed at the thought of my baby having pneumonia. Cole also had mild pectus excavatum — a sunken-in chest — so an X-ray would help monitor, too.

As I left the clinic, I told the receptionist that I was worried about pneumonia. In hindsight, we would have given anything for the diagnosis to have been pneumonia.

We spent most of the next 12 days at Children’s – Minneapolis, meeting people with titles we didn’t know existed. We waited for an official diagnosis and to meet someone who knew what to do. Cole underwent all kinds of tests, imaging and exams. Ultimately, the diagnosis was cardiac fibroma, a rare tumor of the heart. One day during morning rounds, we heard one of the cardiologists tell the other specialists that the main potential side effect of the mass is “sudden death.” Those words still ring loudly in my ear. Cole is only the 21st living case of this type of tumor, so there wasn’t much data to help lead the specialists. The surgeons didn’t want to perform surgery to remove the mass because of its large size — same size as his heart — and location — inside the back wall of the left ventricle. Surgery was too risky, and the tumor wasn’t impeding on the functions of the heart, so we just had to “keep an eye on it.”

At Children’s – Minneapolis, my husband, Zac, and I learned infant CPR and how to use an automated external defibrillator (AED). We received two AEDs but were terrified to bring Cole home, an uncomfortable three hours away.

Over the next five months, every nap that lasted a bit longer than normal sent my mind racing; I was scared to go in and check on Cole. During that period, we gave Cole antiarrhythmic medication every six hours and saw his electrophysiologist, Dr. Chris Carter, regularly.

On Dec. 26, 2010, when Cole was 7 months old, he experienced ventricular fibrillation, a rapid heartbeat, at home. Zac administered CPR and used our AED to put Cole’s heart back into normal rhythm. Cole was flown to Children’s that night.

He went into v-fib, again, four days later.

“Dr. Blue, fourth floor, CVCC,” the voice over the intercom said.

That was a call for our son. The staff at Children’s seemed to come out of everywhere, flooding Cole’s room with the best team for which parents could ask. Zac and I stood in the hall as they worked on Cole for 55 minutes. One of the intensivists informed us that it was time for us to make a decision: ECMO (extracorporeal membrane oxygenation), a type of life support; or end resuscitation. No one knew how Cole would respond to ECMO. There was no guarantee Cole would survive, and, if he did, everyone was unsure about the status of his cognitive functions. We couldn’t give up on him, so we chose ECMO.

For four days, Zac and I watched the staff care for Cole. All we could do was kiss his cold forehead and hold his cold little hand. Cole slowly was weaned off of ECMO, although it was discovered that he suffered numerous strokes and bleeding in the brain.

It was obvious that something needed to be done about the tumor. Surgery was scheduled for Feb. 8, 2011, Tara’s fourth birthday.

Life was an absolute roller coaster, but one thing remained constant: the care Cole received from the staff at Children’s. These people became like family to us. We trusted them to care for our son, and they did so with evident care and dedication. They were with us for the highest of highs and the lowest of lows. They stood by our sides when we looked at Cole lying in his hospital bed. We truly felt Cole was in the best hands when we went to the Ronald McDonald House, one floor below Cole’s bed, every morning for breakfast. This is where we spent time with Tara when she came to visit us with other family members.

I remember numerous conversations with doctors that put my mind at ease. I sat for nearly two hours on Cole’s couch, talking to one of the intensivists. She was able to help me understand what was happening.

On the morning of Cole’s surgery, we said goodbye to him because no one knew if he would survive surgery. Would his heart be able to function without the tumor? A large group of family members sat with us in the waiting room for eight hours. We received periodic updates from staff we had gotten to know well.

Dr. David Overman walked down the hall a little past 6 p.m. to deliver the most amazing news we could have heard: Cole made it through surgery. Not only did he survive, but he didn’t need the help of ECMO, which was a possibility had he made it through surgery.

Although surgery was over and the tumor removal was successfully, Cole wasn’t out of the woods. The next 12 hours were critical. Nurses spent the night stripping Cole’s tubes to make sure there were no blood clots; their dedication was remarkable. They weren’t just doing their jobs; they were helping a baby they cared about.

We were on our way home 10 days later. Walking out of the doors to the cardiovascular care center was bittersweet. We said goodbye to people who came to mean a great deal to us and thanked them over and over for all of the amazing things they did for Cole and our family even though “thank you” wasn’t nearly big enough to show our appreciation.

Today, Cole is 4 and in preschool, getting ready for kindergarten in the fall. He continues to beat the odds. He has fun playing with Tara and his little sister, Ayda. He loves to golf and is looking forward to start logrolling this summer. He still has an internal cardiac defibrillator (ICD) that was placed during the early part of his stay at Children’s. The ICD continuously monitors his heart rhythms and would deliver a shock if his heart were to have another episode, but we’re hopeful and optimistic that Cole will never need that type of intervention again.

Tara, now 8, participates in Jump Rope For Heart at her school. The annual event raises money for the American Heart Association. She raised more than $2,500 at last year’s event. She tells people about the importance of helping others and paying it forward because so many people helped us when we needed it. Her dedication to helping others landed her on the cover of Time For Kids magazine.

Cole sees his team at Children’s Heart Clinic every six months for checkups. We look forward to these visits to hear good news and to show everyone how far Cole has come. We repeatedly have heard from various staff members that Cole is a reminder to them of why they do what they do.

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