At just a little more than 4 months old, Rylan Caruth now is at an age where his mother said he likes to grab and get his hands on everything.
Janelle Caruth of Gilbert said her son will likely get some rattles for his first Christmas, a holiday that many parents take for granted with their children, but one that this infant would not have lived to see had doctors not detected and corrected his heart condition.
As the Caruths prepare to celebrate Christmas with Rylan and their 7-year-old son, Kieran, this year, they are among those who can say they believe in miracles.
Nearly two months ago, Rylan was grasping to hold onto life while doctors performed an ablation on him, a type of surgery implanting shunts and using lasers to correct a condition that caused his heart to beat dangerously too fast. At about 290 beats per minute, Rylan’s heartbeat was more than twice the normal rate — about 140 times each minute.
An extra nerve in the upper part of Rylan’s heart that normally goes away as the body develops was expediting a faster loop of signals to the lower part of his heart to pump blood throughout his body. If the condition would have continued, Rylan’s rapid heart muscle would have worn out and he would have died in a short amount of time, said Lisa Newton, clinical manager at Phoenix Children’s Hospital East Valley Urgent Care Center.
In early November, at 59 days old, Rylan became the youngest person in Arizona to undergo a catheter ablation, a procedure to correct a rapid heartbeat condition known as supra ventricular tachycardia when doctors Andrew Papez and Mitchell Cohen performed the first procedure on a person that small at Phoenix Children’s Hospital. The condition can affect people of all ages who have enlarged hearts or abnormal cells. Performing an ablation on an infant to correct heart arrhythmia is rare.
During this procedure, thin, flexible wires were inserted into a blood vessel through the baby’s groin and threaded up through the blood vessel and into the heart under X-ray guidance. The wires allowed the doctor to record the electrical activity of Rylan’s heart and determine what kind of heart rhythm problem he had and remove the nerve.
“Rylan’s heart was wearing out, and that forced our hand to do the procedure,” Papez said. “Performing the procedure is exceedingly rare on someone his age because there’s risks involved, but the risks of him staying in (supra ventricular tachycardia) were greater than doing the procedure itself. He also had stopped gaining weight, and that’s a concern in itself. You only do the procedure when you’re forced to and there’s no other option.”
Today, Rylan’s only medication is half a baby aspirin a day, quite a change from the four powerful medications he was placed on that weren’t helping him as the condition was causing him to go into congestive heart failure.
“It’s been a huge load that’s been lifted,” Janelle Caruth said. “He’s a completely different baby.”
His rapid heartbeat was first noticed about a week after he was born on Aug. 2, when he was being checked at Banner Cardon Children’s Medical Center for a small hole in his heart that doctors say will close by the time he’s 18 months old. Papez later was able to go around that hole and perform the ablation in a way similar to performing an EKG, but in Rylan’s case, from the inside of the heart.
“After the lady in the cardiology office checked him, she went out of the room and came back with about six people,” Janelle Caruth said. “We were like, whoa, we knew something was wrong. They said his heart rate was too fast, but that it happens all the time. They gave him some medication, but about two minutes later, his heart rate went right back up again and we wound up in the ER with him.”
Rylan was placed in the ICU at Cardon Children’s where he spent about 10 days and was given four medications — flecainide, amiodarone, propan and captopril, strong drugs that help combat an irregular heartbeat and help blood flow more smoothly.
After that, he appeared to be a normal, happy baby, his father said.
“He was sleeping, he was acting normal, his breathing was fine and he seemed to be eating OK,” Kinsey Caruth said. “He wasn’t exhibiting the symptoms. Doctors were surprised that he wasn’t showing any of the symptoms.”
However, in late October, Rylan did begin showing symptoms — restlessness, irritability, decreased appetite, shallow breathing and screaming that went on for hours.
The Caruths returned to Cardon Children’s with Rylan, but he was transferred to Phoenix Children’s on Oct. 26. The surgery, which took three and a half hours, was performed a few days later and included close monitoring of the thin walls of his heart to make sure he could withstand the procedure.
Although Rylan will return to the doctor’s office for follow-up check-ups every six months, his mother said that they can more easily celebrate Christmas as Rylan’s appetite and weight have increased. He has gained more than four pounds since his surgery.
“It obviously was a very stressful time when we were checking him for the symptoms,” Janelle Caruth said. “Personally, I think it’s good he had the surgery and that he’s not being controlled by medication. He’s ballooned from 10 pounds to more than 14 pounds since the surgery. He was a good baby before, but now, you can tell the difference. He’s more normal.”
Papez said, “He’s bounced back to where he’s supposed to be. It’s like it never happened. It’s very gratifying.”
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