A Tulsa family helps others experiencing similar circumstances.
Ben, Sawyer, Natalie and Nolan Alexander at The Tavern, where Ben is the executive chef.
Natalie and Ben Alexander first heard the news during Natalie’s 10th ultrasound. Their baby, Sawyer, had a congenital heart defect called Ebstein’s anomaly.
The multiple ultrasounds were necessary because Natalie had gestational diabetes, requiring regular monitoring. Otherwise, the defect would not have been detected.
“It kind of saved his life because he was so sick after birth,” Natalie Alexander says. “They made me do a Cesarean because we knew about it — so I don’t know if he would have survived a normal birth.”
After he was born, Sawyer was diagnosed with three more defects. He had two large holes in his right atrium and an electrical disorder called Wolff-Parkinson White syndrome.
Surgeons performed his first procedure when he was 1 day old. Sawyer was surgically attached to an ECMO (extracorporeal membrane oxygenation) bypass machine, which Alexander describes as a last-resort life support machine. It oxygenates and removes carbon dioxide from the blood, allowing the heart and lungs to rest.
“He was on that for eight days because his heart was so sick and so enlarged,” Alexander says. “(The heart) was taking up pretty much his whole chest cavity so his lungs were not able to develop and inflate fully.”
Sawyer’s medical team wasn’t sure how he would respond to the treatment, but his heart reduced in size and his lungs were able to develop and expand.
“We got really lucky,” Alexander says.
When he was 7 months old, Sawyer underwent ablation surgery for Wolff-Parkinson White syndrome. At 13 months, he had open-heart surgery, which included seven procedures. He also has had four other surgical procedures.
Sawyer, now 2, is a happy child who smiles all the time. His mom calls him Super Sawyer. Before his open-heart surgery, Alexander describes him as a serious kid.
“Once we had his repair done, we really saw and noticed how sick he must have felt all the time,” she says. “Within hours of surgery, he was a totally different kid. He just laughed all the time.”
Sawyer’s journey is still unfolding, even after open-heart surgery. He has some developmental delays that continue to be addressed through speech, feeding, occupational and physical therapy.
It’s a guessing game, but Alexander says he will need some maintenance procedures later in his life.
“The good news is, because he has been fully repaired, it should never be quite as treacherous as it was for us in the beginning,” she says.
Because of their own experiences, the Alexanders established a nonprofit called Hearts of Steel Foundation. It aids Oklahoma families who need financial assistance because of congenital heart defects and long-term hospital stays. They’ve helped families pay for their utilities and gas when they have to travel out of state, in addition to many other expenses.
“Our son was not supposed to make it,” Alexander says. “He almost died several times. He’s going to have a lifetime working harder than everyone else. We knew congenital heart defects existed logically, but we didn’t get it. Awareness finds funding, and funding provides a cure.”
Congenital heart defects
Nearly one in every 100 babies is born with a congenital heart defect, according to the Children’s Heart Foundation and the Centers for Disease Control and Prevention.
Dr. Heather Cha, a cardiologist with St. John Health System, shares what congenital heart defects are and explains Sawyer’s defects:
Congenital heart defects (also known as congenital heart disease) are abnormalities present at birth.
A defect results when the heart or blood vessels near the heart don’t develop normally before birth. There are many different types of congenital defects, ranging from simple to complex. Some are genetic.
Ebstein’s anomaly is a congenital heart defect affecting the tricuspid valve. The valve is malformed, so it does not function properly to keep blood flow moving in the correct direction. Ebstein’s anomaly can range in severity. If mild, surgery might not be needed; if severe, it might require surgery. It is associated with other abnormalities, including an atrial septal defect (or ASD, a hole in the wall dividing the two upper chambers of the heart).
Patients with Ebstein’s anomaly may have a rapid heart rhythm as a result of a condition called Wolff-Parkinson White syndrome. The abnormal heart rhythm can be treated with medications or a catheter-based procedure called radiofrequency ablation.
Heart episode emergencies
EMSA has one of the highest cardiac survival rates in the country. The rate is high above the national average: 31 percent compared to 7-10 percent.
EMSA attributes the positive statistic to three factors: paramedics, 911 dispatchers and bystanders.
“EMSA paramedics receive some of the most rigorous medic training in the country,” says Stephen Williamson, EMSA CEO. EMSA paramedics, alongside firefighter first responders, operate in what Williamson describes as a pit crew-like fashion, allowing the patient to receive efficient, multi-layered care. This, along with employing the latest, scientifically proven medical treatments, adds to paramedics’ training.
Bystanders are important because the person nearest the victim is critical to saving their life during cardiac arrest.
“If a bystander is able to perform CPR while EMSA paramedics are en route, the survival chance increases significantly,” Williamson says.
EMSA’s 911 dispatchers can act as CPR coaches until the ambulance arrives so the patient can receive immediate care.
“We’ve implemented three main changes over these last five years in treating cardiac arrest: chest compression fundamentals, defined treatment roles and expectations for resuscitation team members, and use of the latest scientifically validated therapies such as patient cooling, and, just within the past few months, use of active compression-decompression CPR,” says Jeffrey M. Goodloe, MD, NRP, FACEP, who oversees the cardiac arrest treatment plan and survival data analysis of EMSA. “We’re pushing to be the largest EMS system in the U.S. with 50 percent-plus survival from witnessed, bystander-CPR supported, out-of-hospital shockable heart rhythm cardiac arrests.”
A person experiencing cardiac arrest will become unresponsive, collapse if standing and gasp or otherwise struggle to breath.
“The warning signs can vary greatly by the individual, and can be affected by gender, age or other health issues,” Williamson says. “However, common signs to look for include painful pressure or squeezing in the chest, neck, back or arms lasting more than a few minutes, shortness of breath, and nausea or lightheadedness.”
When someone appears to be going into sudden cardiac arrest, remember the 3 Cs:
- Check the victim. Ask, “Are you OK?”
- Call 911.
- Compress. Begin CPR, pressing the down on the victim’s chest hard and fast.
It’s important to call 911 first, so that paramedics can be on their way while you perform CPR.
To schedule CPR training, visit www.emsaonline.com.
February is heart month
Feb. 5, 2016
National Wear Red Day
Feb. 6, 2016
45th annual Tulsa Heart Ball
Exchange Center at Expo Square, 4145 E. 21st St.
Congenital Heart Defect Awareness Week