02 November 2018
FRIDAY, Nov. 2, 2018 (American Heart Association) — Creating art and tackling do-it-yourself projects are soothing pastimes for many people, and 37-year-old Amy Cavaliere is one of them. The mother of three from Royersford, Pennsylvania — about a half hour from Philadelphia — enjoys making pallet wall art that combines hand-stenciled words and imagery on stained wood. In fact, she was planning to franchise a popular workshop that offers classes devoted to the activity. “You go in with friends, drink wine and make a custom piece of wooden pallet art for your home decor,” she said. “It’s fun.” Unfortunately, fate had other plans. One morning in February 2017, while getting her children ready for school, Amy felt a heavy sensation in her chest. Her arms began to ache so badly that she couldn’t finish brushing her daughter’s hair. Within minutes, her skin turned pale and she started to hyperventilate. Although Amy had never experienced a panic attack, that was her best guess about what was happening. “What else could it be?” she said. After all, she was young, healthy and active, regularly participating in spinning classes and playing competitive tennis matches against her husband, John Paul. Admittedly stubborn by nature, Amy was adamant that John Paul not dial 911. He did it anyway. Her stubborn streak continued when the paramedics arrived. She insisted upon walking to the ambulance. As paramedics checked her vital signs, she tried to convince them that she was fine. Then her heart stopped. As the ambulance sped to the hospital, paramedic Dave Sauls performed CPR. “I kept expecting her to come out of it,” he said, “but it wasn’t happening.” At the emergency room, the nurses took over chest compressions and continued to perform CPR and AED shocks for nearly 45 minutes. An angiogram revealed a 100 percent blockage of her left anterior descending artery. This type of heart attack is commonly known as the widow maker. Worse yet, the blockage was caused by spontaneous coronary artery dissection (SCAD), meaning a tear in the artery wall. SCAD is a rare event that occurs mostly in women (about 80 percent), with an average age younger than 50. Other disorders are believed to make people more likely to suffer SCAD. One of them is a disease of the blood vessels called fibromuscular dysplasia, which Amy was later diagnosed with having. At her local hospital, doctors decided she needed more specialized help than they could provide. Amy spent nine days in a medically induced coma. Once she awoke, she saw John Paul sitting at the foot of her hospital bed. She had no idea of what had happened. After the sedatives and other medications left her system, Amy felt so wired she couldn’t sleep a wink for two straight days (“my eyes were like saucers,” she said). Watching the clock tick away hour by hour, she was terrified she could experience another heart attack at any moment. Any sort of chest pain causes her anxiety to this day. “Since I don’t remember what it felt like, I don’t have a frame of reference,” she said. “It’s terrifying — the inner turmoil of a cardiac patient.” After 21 days in the hospital, and surviving bouts of double pneumonia and a narrowing of her trachea, Amy was released. It took more than a year for her to start feeling like herself again. Although her heart function is permanently compromised, she is working to build strength and stamina. In the past, Amy didn’t consider it a workout unless she was drenched in sweat. But that’s no longer possible. Nor are the competitive tennis matches with John Paul. “It’s been a hard adjustment,” Amy said. “I had to shift my mentality a bit. It’s about how much I can get done before my heart rate hits 160 bpm.” One day, Dave Sauls, the paramedic, received a Facebook message from John Paul. Dave had heard Amy died. So, of course, he was “flabbergasted” by the message that said she was recovering at home. “It was a gift from God in my life and something I needed at the time,” he said. “I sat there and cried.” Since then, Dave and Amy have become close friends. He has trained many of her friends in CPR. Eager to raise awareness about women’s heart health in general and SCAD specifically, Amy has recorded local public service announcements and attended fundraising walks. “I look at it as my responsibility to warn other women that this can happen to anybody,” Amy said. “I didn’t believe that it could happen to me, and my stubbornness almost cost my kids their mother.” While it still stings that somebody else bought the home decor and art-making franchise that Amy wanted to buy into, she continues to make and sell her own pieces. She uses the name Heartwood, which her children suggested. “This,” she said, “is my therapy.”
26 September 2018
WEDNESDAY, Sept. 26, 2018 (American Heart Association) — The day after Maggie Maine was born, doctors told her parents there was a 70 percent chance she’d never walk, talk or be able to feed or bathe herself. An MRI had found severe defects in both her heart and her brain. Relying on their faith, Jeff and Renae Maine decided to focus on the 30 percent chance that the doctor was wrong, that Maggie would grow up to be “normal.” “We’re focusing on the positive instead of the negative,” said Jeff. Maggie’s prognosis wasn’t a surprise. Ultrasounds done before she was born had already found defects in her brain and heart. The MRI only confirmed those findings. Doctors told the Maines, who live in Bluffton, South Carolina, that about 75 percent of Maggie’s cerebellum was missing due to a rare condition called Dandy-Walker variant. Located in the lower, back portion of the brain, the cerebellum plays a vital role in balance and in coordinating muscular activity necessary, for example, to ride a bike. She also had a heart condition called tetralogy of Fallot, a combination of four heart malformations. These include a hole between the lower chambers of the heart that allows oxygen-poor blood to flow out of the heart to the rest of the body. Tetralogy of Fallot symptoms include a bluish skin tone, chronic fatigue, especially during physical activity, and a dangerous thickening of the heart walls. The best news Jeff and Renae heard following the MRI was that Maggie’s heart defects were repairable. She had her first open-heart surgery at just 3 months of age and, a week later, had a pacemaker implanted into her abdomen. From that scary, gloomy start, look at her now, at age 8. While there’s no treatment for Maggie’s brain defect, her cognitive development has so far been completely normal. “She’s in second grade but she’s reading at a fifth-grade level,” Renae said. “She loves to write, play the piano and she even takes dance lessons. She’s just a normal, energetic little girl.” About the only signs of her condition, her parents said, is that she sometimes has difficulty with balance and that she runs slower than other children her age. One of Maggie’s many neurologists called her development “unexplainable.” The Maines prefer “miracle.” Yet, while they’ve tried to remain optimistic, Jeff concedes there have been “dark days.” “We’re human, too, so sometimes the optimism fades,” he said. As for Maggie, her parents say she understands her physical limitations, but at an 8-year-old level. “She calls her pacemaker her ‘battery,'” Jeff said. “We were at the airport recently and she asked if the security scanner would hurt her battery.” Maggie has had four additional heart surgeries since her early months. There are more to come, yet the prognosis is encouraging. “Maggie’s doing great, although she has challenges ahead of her,” said her pediatric cardiologist, Dr. Patrick Broderick with the Savannah Children’s Heart Center. “She’s had some leakage through the pulmonary valve, for example, so she’ll eventually need a new one. We’ll try to wait until she’s 12, maybe 14 years old before we do that, though.” Broderick said he tried to encourage Maggie’s parents by telling them the Olympic snowboarder Shaun White was born with tetralogy of Fallot. “So now I tell them that she owes me three gold medals,” Broderick said. But Maggie has already decided she wants to be a cardiologist when she grows up. So perhaps someday she’ll be doing these procedures herself on another little girl.
07 August 2018
TUESDAY, Aug. 7, 2018 (American Heart Association) — Despite a nerve-racking pregnancy and delivery, Bevin and Scott Reinen described the moment that they finally got to meet their baby boy as “euphoric.” Four days after his birth, the couple sat beside their son following an open-heart surgery to treat a rare congenital heart defect. Baby Kemp was covered by wires connected to monitors and machines keeping him alive. Adding to the parents’ anguish, the doctors had to leave the chest incision open until the swelling subsided. “We could literally see his little heart beating inside of his chest,” Bevin said. “I tried to numb myself to the sight of it, but just couldn’t wait for him to be stitched back up.” Their journey had begun with Bevin’s 12-week ultrasound, when the technician and doctor could not confirm that he had four chambers in his heart. Two days later, after a fetal echocardiogram, they received the news that their unborn son had hypoplastic left heart syndrome, or HLHS. Without immediate intervention, the congenital heart defect is fatal, usually within the first few days or weeks of life. “It was a lot to take in and tough to process,” Scott said. With HLHS, the left side of the heart doesn’t develop properly while a child is in the womb, making it impossible for the left ventricle — responsible for pumping freshly oxygenated blood out to the rest of the body — to function properly. “Receiving the news was gut-wrenching,” Bevin said. “We were informed about all the potential risks and given difficult options to consider.” The Reinens were supposed to host a Super Bowl party that Sunday, which also was when they were going to share with friends that Bevin was pregnant. They canceled the party to allow themselves time to sort through the news. “We took the weekend and did a lot of soul searching and were just really vulnerable and communicative with each other,” Bevin said. By Monday, they picked themselves back up and got to work. “We were on a mission to do everything in our power to set him up for success,” she said. That morning, Scott was on the phone with top doctors and hospitals in the field. He also reached out to families affected by congenital heart defects. He and Bevin chose Boston Children’s Hospital because of its expertise in treating HLHS. After Kemp was born on Aug. 4, 2017, at Brigham and Women’s Hospital, he was taken in a carriage across a footbridge to Boston Children’s Hospital, with Scott accompanying his newborn son. “It was a very intense experience,” he said. “We felt so much anxiety but also excitement because we just had a baby.” The first surgery, called the Norwood procedure, allows the right ventricle to pump blood to both the lungs and the body. Blood is directed to the lungs through a shunt. Children born with HLHS undergo a set of three surgical procedures in the first few days, months and years after birth to help stabilize the heart and reconstruct it so that it can pump blood with only one ventricle. Once Kemp recovered from his first surgery, he went home to Virginia Beach, Virginia. The time until the next surgery is known as the “interstage period.” During that phase, the Reinens endured a daily regimen that included giving Kemp multiple medications three times a day, administering daily weight and pulse checks, recording details about every feeding, as well as frequent appointments with his cardiologists and other specialists. Only immediate adult family members were allowed to interact with Kemp for fear he would contract an illness. The second surgery, which included a Christmas stay in the hospital and a few anxiety-provoking bumps, ultimately proved as successful as the first. Called the Glenn procedure, it involved connecting the superior vena cava — a large vein that carries deoxygenated blood into the heart — to the right pulmonary artery. The benefit was stunning. “Kemp looked healthier and seemed to be much stronger,” Bevin said. “His skin was pink and vibrant.” In January, their extended families gathered for belated holiday celebrations, where relatives got to interact with Kemp much more personally. They also marveled over his name. Kemp was named after Scott’s late great-uncle. However, only after they received his diagnosis did they discover that Kemp means “warrior.” “After we looked up the meaning, we knew it was the perfect name for him,” Bevin said. More battles remain for Kemp. Even after successful treatment, children are advised to limit physical activities to their own endurance levels and will require lifelong medication, repeated cardiologist checks and other potential cardiac interventions. Kemp turned 1 on Aug. 4. He’s thriving and acting every bit the typical toddler. He loves the beach, playing with other children and teasing the family dog, Matty. “You’d never know he’s had two heart surgeries or a heart problem,” Scott said. “He’s super energetic, running around like a crazy man. It’s pretty remarkable, but his heart health will always be on our minds.” Because they understand how difficult the journey is, the Reinens have reached out to help other families impacted by CHDs and to spread awareness. Bevin helped support families impacted by CHD through Mended Little Hearts of Coastal Virginia, organizing a drive to provide a “Bravery Bag” filled with items to make the stay at Children’s Hospital of the King’s Daughters in Norfolk, Virginia, more comfortable for heart patients and their families. Bevin and Scott also shared their story at the Hampton Roads American Heart Association Heart Ball. Kemp’s final surgery of the three-stage repair is expected to come within two years. “In the meantime, we are just enjoying everyday life with our little guy and making time for lots of fun adventures” said Bevin, who brought to this ordeal an expertise honed from years as a children’s educator. “He came into this world as ‘Kemp the Warrior,’ but now he’s just our son,” she said. “There are countless things that make him special that have nothing to do with his heart.”
02 August 2018
THURSDAY, Aug. 2, 2018 (American Heart Association) — One night after work, on her way up three flights of stairs to her apartment, Kayde Wolf paused on every landing to catch her breath. In her 20s, fit and healthy, she didn’t understand what was happening. The next day, Kayde felt lethargic and anxious. Her heart pounded so furiously that she could see it moving her chest. Tests revealed she had an enlarged heart caused by an inflammation known as viral myocarditis. This reduced her heart’s ability to pump oxygen to the rest of her body, triggering her symptoms. A cardiologist told her that medication would get her back to normal. Eventually, it did. When she and her husband Kevin said they were ready to start a family, doctors said her heart would not be a problem. And it wasn’t, until the 37th week of her pregnancy. Kayde woke up early one morning and didn’t feel right. No matter how she positioned herself, she struggled to breathe. “This wasn’t just pregnancy,” she said. She was in heart failure. The next morning, doctors performed a cesarean section, delivering a healthy boy. Again, Kayde was prescribed medication and rest. Recovery came slower this time, which was especially excruciating because her newborn son Carter needed her. Yet Kayde was too weak to stand while holding him. She couldn’t even change diapers for several weeks. “The hardest part of all of this was watching somebody practically raise my infant,” Kayde said. Another hard part: Kayde was told not to try having more children. Her heart couldn’t handle it. The challenges, however, were only beginning. The medication that had fought off her heart problem years before did not work this time. After seeing a variety of doctors, she learned that she was born with a condition called left ventricular non-compaction cardiomyopathy. In simplest terms, a portion of her heart never properly developed. This was preventing her heart from healing, the cardiologist told her. A heart transplant would be the only way to save her life. “I lost it,” said Kayde, who was 28 and the mother of a 6-month-old. “It was like a kick to the gut,” Kevin said. Kayde’s health deteriorated as she waited for a donor heart. Unable to walk, her skin turned pale and cold to the touch, she checked into a hospital for round-the-clock care. She and Kevin were forced to face the possibility she might not survive. “Every night I said goodbye, I hoped it wasn’t the last time I would speak to her,” he said. The good news came weeks later. Kayde had enough time to see her son before getting wheeled into surgery. When she eventually regained consciousness, Kayde’s face was pink, her fingers warm. Soon, she felt more energy than she had in months. “They couldn’t have asked for a better match for my body,” Kayde said. “I was bound and determined to get on my feet and learn how to walk again.” Now a stay-at-home mom to 4-year-old Carter, Kayde shares her story whenever possible. She has become involved with both the Texas Heart Institute and the American Heart Association. She recently participated as a fashion model for the organization’s Go Red For Women event in Austin, Texas. “Growing up, our high school rival’s color was red, so I never wore it,” Kayde said. “Now I have a whole section of my closet that’s red.” Her blog is called A Grateful Heart, encapsulating her state of mind. After all, she’s thankful for so much: her heart donor, the doctors and her family. She feels gratitude for the little things, too — a delicious meal or just a lovely summer day. Because of the medication she takes, she can no longer swim in community pools or be in the sun uncovered, but Kayde and her family still spend plenty of time outdoors. Fishing, swimming and attending football games at their alma mater, Texas A&M, are a few of their favorite activities. “I’m completely back to normal,” she said, “but it’s a new normal.”