When a Medical Story Hits Home

by:Honde     2020-07-20

'I think there's something wrong with Bret,' the high school tennis coach said, as she ran towards me.

When I got to the court, I saw my 15-year-old son, Bret sitting on a bench, head between his legs. He looked so fragile.

'Bret, you ok?' I asked, leaning against the fence. He raised his hand but kept his head down. I walked onto the court and sat beside him. 'Bud, what's going on?'

'My heart,' he stammered. 'My heart feels like it's trying to jump out of my chest and I'm really...dizzy.' He raised his hand again, unable to finish. He looked terrified and his face was ashen.

The coach told me he had been complaining about his heart feeling funny the last couple of matches. On the way home, I called the pediatrician's office to make an appointment. I have no logical explanation for why I didn't take him to the emergency room except for this: I didn't want to be one of those mothers, accused of over-reacting. Maybe it was just a virus, an anxiety attack or worse, nothing, I reasoned. Even still, I hardly slept that night, waking up to check on Bret, leaning in closely to make sure he was still breathing.

It's Quickly Apparent Something Is Not Right

The next morning, the pediatrician hooked Bret up to an echocardiogram machine. A minute or two later, his heart rate jumped to over 200 beats a minute. The color drained from Bret's face as he grabbed my arm and looked at me, panicked. He was hot and sweaty. The doctor told him to put his head between his knees and I tried to get him to calm down. This attack lasted 10 minutes.

'How long has this been going on?' the pediatrician asked Bret as soon as his heart stopped racing.

'Nine months, maybe a year, maybe longer' Bret answered. Maybe longer? I felt sick. How could I have missed this? The doctor raised his eyebrows and asked, 'Did it occur to you that maybe you should tell someone?'

'I didn't think it was a big deal,' he said, shrugging his shoulders. 'Is it?' The doctor told him it was, in fact, a rather big deal.

The pediatrician said Bret's condition was, more than likely, some type of heart beat disorder, or arrhythmia, most likely a tachycardia, a condition in which the heart beats too fast. Until we knew what it was for sure, Bret was warned not to exert himself physically or drive a car (he had his learner's permit at this time).

A Medical Story Hits Close to Home

As a medical reporter for The (Cleveland) Plain Dealer, I had done all kinds of stories about kids with all sorts of heart conditions. But when a doctor is talking to you about your own child, it's hard to take it all in and comprehend what it all means. Many arrhythmias required medication, surgery, a pacemaker or could lead to sudden death. As a reporter, I knew where to go Online to find more about arrhythmias but had to stop after I read the words, 'sudden death,' because it made me feel like I was trying to drink from a fire hose.

That night, I slept on the floor in Bret's room, wondering what I might have done when I was pregnant with him to cause his heart anomaly. I cried myself to sleep.

A Source Becomes My Son's Doctor

Bret was referred to Dr. John Clark, director of Akron Children's Arrhythmia Center, a man, coincidentally, I had written several news stories about. He sent Bret home with an event monitor, also known as a Holter monitor, a small device he could wear around his neck or attach to a belt buckle for a couple days. It comes with a couple electrodes we had to stick to his chest with adhesive. The device would record all of Bret's heartbeats and then allow us to send them to the doctor over the phone.

After Bret put on the monitor, it took less than 15 minutes for an episode to show up. And then another. And then another. The episodes showed up fast and lasted as long as 10 to 15 minutes. One of the episodes brought him close to passing out. His condition seemed to be getting worse, as though now he could finally stop trying to pretend it wasn't happening and could surrender to it.

After seeing Bret's results, Dr. Clark confirmed Bret had SVT, or supraventricular tachycardia, one type of arrhythmia. He explained SVT affects 1 out of 300 children. The heart knows when to beat because it is told to do so by electrical currents sent through it by a series of nerve pathways. People with SVT have an extra pathway that creates extra currents that curse through and make the heart beat twice as much. Bret was either born with it or it developed because of all the hormonal changes and rapid growth he was going through.

'Bret's SVT is not life threatening but it's a pain in the neck,' I remember Dr. Clark telling us. I made him repeat the part about it being non-life threatening a couple times. He explained the treatment options: medication (beta blockers), catheter ablation surgery or 'wait and see,' if his condition got worse.

For teenagers whose SVT brings them close to passing out, Dr. Clark usually recommends surgery. Heart ablation uses either extreme cold (cryo-ablation) or heat (radiofrequency) to destroy abnormal electrical pathways within the heart. The procedure is minimally invasive with low risk. It was approved by the FDA in 2003 and has a 90-95 percent permanent cure rate. Bret was given an EKG, another echocardiogram and a thorough physical exam to make sure his heart was functionally and structurally normal.

His heart was fine, but for the SVT.

A Family Decision for Catheter Ablation

My husband and I thought surgery was the best option for Bret's condition and it was scheduled almost immediately. Bret's episodes continued to get more frequent and last longer. A day or two before the surgery, he had an episode that lasted 19 minutes-one minute less than the critical time to call the ambulance. I rarely let him out of my sight.

Some Surprises on Surgery Day

Bret was in surgery more than eight hours. Once Dr. Clark got into Bret's heart he discovered Bret had two extra pathways on the outside of his heart, not just one-something only 1 in 20 kids with SVT have. He chose to use heat to destroy the cells that were causing his heart to beat too fast because then the problem is much less likely to re-occur. Most of the time was spent 'mapping electrical activity' in Bret's heart, inducing tachycardia to figure out where in his heart the problem was coming from and then monitoring electrical activity after the cells were destroyed.

Current technologies also allow for real-time, three-dimensional mapping within the heart without fluoroscopy (X-ray exposure), sort of like watching a video game of heart surgery, with wires floating on the screens in search of 'enemy' pathways to destroy. As a result, Bret probably had two minutes of X-Ray exposure versus the national average of 40 minutes.

Bret spent that night in the hospital. He complained of some pain in his groin, where the catheter was threaded into his heart during the ablation procedure, but that was about it.

A Swift Recovery and Back to His Old Self

Three days later, Bret was back to his old self, jumping on the trampoline, swimming and making trouble for his brothers. We were warned that he'd continue to feel flip-flopping or fluttering in his heart, as his heart adjusted to the new 'normal' beat, and he did for a couple weeks.

I stopped beating myself up about what I might have done to cause Bret's condition after Dr. Clark told me SVT almost always happens by chance. 'It isn't caused by anything mom did or didn't do,' Clark said. 'It is only rarely familial.'

Dr. Clark said he finds it amazing that SVT is as rare as it is.

'Everyone has accessory pathways, extra wires or the potential for SVT when developing in-utero,' he said. 'We all have thousands of these extra wires early but we're programmed so that our heart can identify the extra wires and break them down long before we are born.' He said that after we're born, the heart continues to look for the abnormal wires and will continue to do break them down for as long as one year after birth.

'Fifty percent of children who have SVT at birth will outgrow it by 1-year of age,' Clark said. A kid like, Bret is the exception.

Bret is now 18 and a sophomore in college. Three years post op, he's doing great. I know he's fine, but I still say a silent prayer whenever he leaves to play ultimate Frisbee, football or tennis with his buddies, asking God to keep him safe, his heart strong and to please bring him home again.

It's a mother thing.

What I Know Now:

1. To sit down and go through the questions on the school physical forms with each of my boys every year.. Parents shouldn't assume everything's the same. We need to sit down and ask our children specifics from that paperwork, like 'Do you experience shortness of breath?' 'Do you experience chest pain?' and not assume we know the answers just because we haven't observed something, or our child hasn't complained of these symptoms.

2. The symptoms of heart arrhythmias. As it turns out, Bret probably had these symptoms long before they got bad enough for him to have to sit down while playing tennis. I shudder now to consider that he was trying to work through extreme dizziness to the point of almost passing out because he thought that was normal. Again, ask your child the questions on the pre-participation physical exam forms and don't assume you know the answers.

3. To ask how many procedures the surgeon has done before. As it turned out, I lucked out. Dr. John Clark who practices at a large children's hospital has done over a thousand of these procedures but I could've ended up at a hospital with someone who had much less experience. There are approximately 180 pediatric electrophysiologists in the United States, which means they all know each other and the quality of each other's work. Make sure you ask how many procedures your surgeon has done. How long has he/she been at the hospital where the procedure will be done? What is his/her success rate? How many times has he/she had a complication? What were the complications? If the your doctor's success rate is low and his/her complications high, find another doctor.

4. More about the procedure itself. What is my child going to go through to have this done? What can I expect? What are they going to feel, if anything? How is the surgery done? What are the potential complications? How long is the recovery period?

5. That it is important to choose a surgeon who is comfortable using cryo-ablation. Because more often than not, a doctor can't be certain of what he'll find in a child's heart until he gets into it. And if the surgeon discovers the problem is in the middle of a child's heart, rather than the outside, I, as a parent, would want to know that he is comfortable and proficient using cryo-ablation because of its 'protective nature of the heart's normal wire,' Dr. Clark said.

6. Most teens end up in the catheter lab not because SVT is life threatening but because its life-altering. Bret's life was beginning to be affected by SVT. He didn't know when it was going to happen next. The surgery eliminated our worry whenever Bret wasn't with us: would someone know to get him to the emergency room if he was having an episode that wouldn't quit? Plus, whenever we vacationed, we'd have to know where every emergency room was between our home and Myrtle Beach. Prior to surgery, Bret's physical activity was curbed and there was a chance, if his episodes continued, he wouldn't have been able to get his driver's license. Teens on the road are scary enough, much less one who is about to pass out.

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