HIGH PROFILE: Family’s experience with rare genetic disorder sets Carla Lamb on course to help prevent future deaths

“A lot of people tell me I’m strong. I don’t see myself as strong at all. I’ve had lots of weaknesses. I hope people will see me and my family as survivors and advocates.” - Carla Lamb
(Arkansas Democrat-Gazette/John Sykes Jr.)
“A lot of people tell me I’m strong. I don’t see myself as strong at all. I’ve had lots of weaknesses. I hope people will see me and my family as survivors and advocates.” - Carla Lamb (Arkansas Democrat-Gazette/John Sykes Jr.)

Carla Lamb is four years and 150 miles away from what happened that late July night in Paragould -- the night of her husband's fatal cardiac arrest.

His heart stopped, and her family shattered in a moment, and all for a reason she can say surely now, having said it so many times since then, but that nobody said at all the night it happened.

"I didn't know what it was," she says. "Who ever heard of it?" Brugada syndrome, pronounced brew-gah-dah: the thing that killed Kody Riggan.

Remarried, she is the wife of Kyle Lamb, president of Lamb and Associates Packaging, Inc., in Maumelle. She is devoted to her new life, to her three grown children and to the American Heart Association.

She and her 23-year-old daughter, Carlley Riggan, will be featured during the association's central Arkansas fundraiser, the annual Heart Ball on June 27 in Little Rock.

"I don't want my late husband to be forgotten," she says, for people to wonder what happened to him. "My goal is to tell my story, and through that, for his legacy to go on."

Kody slipped into a troubled sleep that summer night. She tried to shake him out of it, maybe a bad dream, maybe a snoring fit, only to find that his heartbeat was erratic. Hands pressed to his chest, she felt his heart gone wild, and "he was so hot, I thought it was a fever."

"He stopped breathing."

She tried to revive him with CPR (cardiopulmonary resuscitation), having learned as a schoolteacher how to do chest compressions. But his pulse did not respond.

"I wasn't strong enough," she says, and as it turned out, nothing was strong enough. Nothing the paramedics could do, nothing the hospital could do was strong enough.

Kody Riggan, 46, died Aug. 1, 2016, at St. Bernards Medical Center in Jonesboro.

"He did everything right" to keep fit, Lamb says: avid outdoorsman, duck hunter, golfer -- in fact, he played golf the last day of his life.

He ran, kept to a healthy diet, salad for lunch, a believer in physical check-ups, never before hospitalized. With a wife and children and a growing business to care for, he seemed to have everything going for him.

Kody studied finance at Arkansas State University and put his degree to work for his family's farm tool business that started in 1935, in Corning north of Paragould. He led the firm's expansion to seven Legacy Equipment John Deere dealerships in Corning, Piggott and Paragould, and four in Missouri.

He was church-centered, attending First United Methodist Church in Paragould. He wrote about duck hunting for Greenhead magazine. He lived by and handed out to friends a collection of maxims he called "The Kody List." The list included: "Strive for excellence, not perfection." "Live for the present." "Realize and accept that life isn't fair."

The one thing he worried about, the fear that made no sense for a man in his condition, Lamb says, "was anything heart-related. Anything like that, Kody would just cringe."

Too late, the medical condition behind his death became apparent in a file he kept from a check-up years before. The file contained the record of an EKG (electrocardiogram) test he had taken. The test of his heart's electrical activity showed Brugada.

The life-threatening condition is typically hidden as in Kody's case, without symptoms, genetic. Its discovery in Kody's medical records made it urgent for his and Lamb's daughter, Carlley, and two sons, Carson and Cade, to be tested for the dire possibility.

The brothers do not have it. But Carlley does.

The doctors gave Carlley a medicine that would bring on the condition if it existed in her, and she awoke to the prospect of life with Brugada -- life with a killer inside.

Lamb is on a mission to end the incurable thing that came into her home at night to feed on hearts and happiness "so we don't have to go around being scared."

Her daughter and sons have stood up to the trauma so well, she says, "I would think I was weak if I didn't. Kody would be so proud of them."

Brugada syndrome is named for three Spanish cardiologists, the Brugada brothers. The condition might be as old as the human heart, but they were the first to identify it, in 1992, and later to find a genetic cause for it.

The trouble is a form of arrhythmia, an irregular heartbeat. Some people's hearts beat too fast, or too slow, or skip a beat, or go off like a drummer with no sense of timing.

Anyone might feel a bit of a palpitation once in a while -- an odd thump or flutter, "usually harmless," according to the Mayo Clinic. But chronic or continuing arrhythmia can lead to strokes and heart attacks, and Brugada can bring about sudden death.

"Brugada syndrome is one of a range of genetically inherited disorders of the heart rhythm machinery," says Dr. Paul Mounsey, heart rhythm specialist and director of cardiovascular medicine at the University of Arkansas at Little Rock.

Not only can a patient have it and not know, but even doctors need the results of an EKG test to diagnose Brugada. Mostly men have it, especially men of Asian descent, Mounsey says. It often comes on at night, at rest, possibly triggered by a high fever.

"The first thing to remember about it," the doctor says, "it's rare." The disorder affects one, maybe two people in a thousand.

Brugada is so recently identified, so uncommon, it remains an "active area of research," he says. The fact that the condition is genetic means there is no cure. "We can't change what our genes are." But doctors have ways to treat it, notably a life-saving implant similar to a heart pacemaker called a cardioverter-defibrillator.

A pacemaker keeps the heart beating at a healthy rate. A defibrillator monitors heart rhythm, and if the heart goes off beat, the battery-powered device sends an electric signal to fix the timing.

"It will save your life," Mounsey says. Along with medications and other ways of controlling arrhythmia, it means that people should not be scared, either, to see a heart specialist.

"What cardiologists are good at is helping people have normal lives," Mounsey says.

YOUNG AT HEART

Carlley Riggan is an assistant buyer at Dillard's corporate office in Little Rock. She will be featured at the Heart Ball, telling her part of the family's experience and how she makes the best of her life as a Brugada survivor.

"I have a defibrillator placed in my left side," she says. The device " is about the size of an iPhone, so a lot larger than most would expect, but very hard to notice unless one is looking to see it."

If her heart went out of rhythm -- "I have had no issues so far," she says -- the implant would send a shock to correct the beat, and it would let her doctors know what happened.

She found it "very difficult at first" to accustom herself to the change. Physically, there was the "heaviness of a foreign object" that had been made part of her. Mentally, "one of my biggest fears going through all of this was that I would not be able to live my normal, day-to-day life."

Now, she often forgets about the implant. "If anything, this has encouraged me to be more active, healthy and enjoy the little things in life," she says, "because you never know when those moments could be taken away from you."

Her father's death led to the implant that, one day, might save hers. But the same device reminds her that her father need not have died if only more people knew about Brugada and what doctors can do about even such serious heart conditions.

"I have prayed for a long time on a sign that would guide me on how to use my experiences to help others," she says. "One day after praying for this the previous night, the American Heart Association reached out to me to share my story, and I knew this was an amazing opportunity."

Carson Riggan, 26, is an MBA candidate at Southern Methodist University in Dallas, looking toward a career in investment banking.

"The first day that our dad was in the hospital was probably the most stressful day of my life," he says. "We wanted answers, and although the doctors at St. Bernards in Jonesboro are absolutely fantastic, it was simply too soon for them to know exactly what happened."

Carson remembered that his father had gone to a clinic in Dallas for a physical about five years earlier. He found the results in a "big folder" in the gun safe at home -- including the EKG record that meant he and Cade had to be tested.

The test was no big deal, he says, "not after what my sister had gone through." Carlley's diagnosis hit him so hard, "I lost it. It took me a long time to get over the fact that she ended up with the disease instead of me. After everything that had happened, I didn't feel like it was too much to ask for: That I could carry the burden while she and Cade lived a normal life."

"But in the end, she's the strongest out of the three of us. She's the most level headed, the kindest, the most caring and the most selfless. She was diagnosed with a life-threatening disease and has not complained about it a single time. Not a single word of negativity. I think that's important to highlight."

Cade is 18, a high school senior in Little Rock, thinking of law school. He slept soundly the night of his father's cardiac arrest, with the prospect that he and his dad were going to fly off to a golf tournament in Minnesota the next morning.

Told that his father was ill, "I thought it was the flu or a small cold," he says. "I didn't think much of it. I was 14, I didn't think much."

"Every night before bed, he would tell me he loved me," Cade says. "Kids made fun of me for it, but looking back, I'm glad he did. I'm glad I got to know him for 14 years, and I would give a lot to get 14 more, or just a few seconds to say goodbye."

MOTHER'S HEART

One thing that still bothers Carlley about her implant: "I am unable to go through metal detectors."

She carries a medical card to show at airports, concerts, any place with metal detectors, which could disrupt the implant. The card explains her condition, but still, "most people have never heard of Brugada syndrome." And most people, she finds, associate heart trouble with being old.

Her mother has more to say about it.

"I wish people would have more empathy for her," Lamb says. "They tell her, 'But you look so healthy.'"

HEART DESIRES

The American Heart Association helps pay for Brugada research along with many other aspects of heart disease. The association reports currently funding nearly a million dollars' worth of research in Arkansas, at places including UAMS, the Arkansas Children's Research Institute and University of Arkansas, Fayetteville.

"While nearly one million dollars is an incredible amount, there isn't enough to accommodate every idea," says Rebecca Buerkle of the Central Arkansas American Heart Association.

"That's the premise behind this year's gala theme, 'Hidden Hearts.' We want to inspire our guests to give because through their support who knows what hidden possibilities could be discovered."

The drive is urgent, for one reason because heart disease and its consequences are on the rise nationally and in Arkansas.

Nationally, about 2,400 people a day die from cardiovascular disease -- 50 a day more than in 2016, according to Heart Association figures. Strokes kill another 400 Americans a day.

Heart disease is the No. 1 killer in Arkansas: about 8,000 deaths a year in a state beset with high blood pressure, blood sugar and weight concerns, all of which can lead to heart problems.

Headquartered in Dallas, the American Heart Association started in 1924. It depends on public support. Two-thirds of the organization's 2018-19 fiscal budget came from contributions, bequests and fundraising events including the Central Arkansas America Heart Association's annual Heart Ball.

This year's Little Rock Heart Ball will be Saturday, June 27 at the Statehouse Convention Center. The black-tie gala features dinner, dancing and donations.

"It's a really big deal," event organizer Tammy Quick says. "We're trying to make the world a healthier place.

HEART GOES ON

Lamb has found a new life in a new place.

"I see the world differently than before," she says. "I see it as kinder. I don't take things for granted. What makes a good day for me is to make good memories."

"A lot of people tell me I'm strong. I don't see myself as strong at all. I've had lots of weaknesses. I hope people will see me and my family as survivors and advocates."

"My story is not a tragedy."

More information about the heart ball and other fundraising events is available at heart.org, or by calling (501) 707-6591.

SELF PORTRAIT

Carla Lamb

• DATE AND PLACE OF BIRTH: June 21, 1972, Newport

• ONE THING I MISS ABOUT LIVING IN PARAGOULD IS: My friends there, I call them my family.

• ONE THING THAT MAKES ME GLAD TO BE IN LITTLE ROCK IS: I've met a lot of new friends. I love being here with my current husband (Kyle Lamb) and his friends.

• MY BEST MOM SKILL IS: I get phone calls from all three of my kids every day, and I love it. They depend on me, and they value my opinions.

• THE HOME-COOKED MEAL I'M FAMOUS FOR IS: Chicken spaghetti -- and mac and cheese. When I'm sad, I eat a big bowl of mac and cheese.

• THE BEST ADVICE I EVER GOT WAS: When speaking of others, ask yourself is it necessary, is it true and is it kind?

• I CAN OR CAN'T DRIVE A TRACTOR: I cannot drive a tractor.

• MY FAVORITE COLOR IS (A) HEART ASSOCIATION RED, (B) JOHN DEERE GREEN: I really love red. (But her late husband was a John Deere tractor dealer, and John Deere people, she says, "bleed green," and she is wearing a green top).

• THE BEST ADVICE I HAVE FOR A FAMILY COPING WITH HEART TROUBLE IS: You know your body better than anybody else does. Keep researching. Keep asking questions.

• SOMETHING I WOULD NEVER PART WITH IS: That's a hard one for me because I've gotten good at letting things go. Old photos, I treasure the most.

• MY FAVORITE SONG IS: Celine Dion's "Courage." (The lyrics open: "I would be lying if I said I'm fine./ I think of you at least a hundred times.")

• ONE WORD TO SUM ME UP: Grateful. You can't survive without some kind of feeling grateful.

photo

“I see the world differently than before. I see it as kinder. I don’t take things for granted. What makes a good day for me is to make good memories.” - Carla Lamb (Arkansas Democrat-Gazette/John Sykes Jr.)

High Profile on 03/22/2020

Upcoming Events