Turning 13 is a big milestone for kids; one often marked by a memorable celebration, rather than a call for increased blood donations. But 12-year-old Austin Le Monte has very different plans for his upcoming birthday. Instead of a party and presents, he’s asking friends and family to donate blood to CHOC Children’s.
Seen by numerous specialists at CHOC, including a pulmonologist, allergist, gastroenterologist, hematologist and cardiologist, Austin has benefitted directly from the hospital. When he comes to CHOC for his monthly infusions, he sees other children, like him, who depend on the generous support of blood donors.
The first Austin Le Monte Blood Drive took place last year, attracting 28 donors over six days. This year, he has worked with CHOC’s Blood and Donor Services to extend the drive, which launches February 1 and will conclude on March 30, his birthday.
“We added more time to allow even more people to make plans to donate,” explains Austin. “I’d like to get at least double the number of donors we had last year.”
He has secured the support of his care teams, who participated in his blood drive last year and plan to do so again.
Dr. Anthony McCanta, his cardiologist, says, “Austin is a great young man, whose life is integrally connected to CHOC, doing a selfless act to help other patients. I am definitely donating again in his blood drive and encouraging my colleagues to do the same.”
Austin’s mom, Heather, shares Dr. McCanta’s admiration. “Austin has been through a lot and his experiences have only increased his feelings of empathy towards others. He’s kind, caring and compassionate, and really just wants to help other kids.”
In addition to organizing his blood drive, Austin stays busy with his honor classes and soccer team. He admits his focus over the next couple of months will be the blood drive; he’ll likely call daily to check in on the number of donors.
“Donating blood saves lives. When you donate to CHOC, you are supporting a great place and kids who really need the blood,” says Austin. And for people who may get scared or anxious by the thought of donating their blood, he encourages them to consider the courage of CHOC patients. “Just think about what they are going through. They stay brave, and so should you.”
To participate in Austin’s blood drive, February 1 – March 30, call 714-509-8339 to make an appointment or email firstname.lastname@example.org. Please note CHOC’s Blood and Donor Services is open 7:30 a.m. – 5:30 p.m., Monday – Friday.
Sofia Rodriguez and CHOC Children’s cardiologist Dr. Anthony McCanta are making medical history. The petite 12-year-old recently became the smallest and youngest patient to receive the Micra® Transcatheter Pacing System (TPS). The innovative physician, who specializes in pediatric electrophysiology, joins an elite group of doctors in the world who have implanted the device, and is likely the first to do so in a child.
About the size of a vitamin, Micra TPS, which was approved by the Food and Drug Administration last year, provides the most advanced pacing technology at one-tenth the size of a traditional pacemaker. And unlike traditional pacemakers, the device does not have cardiac leads, which are the wires that carry electricity from the pacemaker to the heart and the other way around. This activity occurs between 100,000 to 200,000 times in most children, eventually putting a strain on the leads. The leads can then break or stop working properly, requiring a new device to be implanted.
In addition to being leadless, the Micra TPS is small enough to be delivered through a catheter and implanted directly into the heart instead of a surgical “pocket” under the skin. This offers patients a safe alternative to conventional pacemakers without the complications associated with leads — all while being cosmetically invisible.
Diagnosed shortly after birth with a particularly complex form of tetralogy of fallot, a rare and serious heart condition, Sofia had her first open-heart surgery before turning 1 month old and a second, to implant a traditional pacemaker, when she was 6 months old. Abdominal surgery followed, as did a diagnosis of DiGeorge syndrome, a chromosomal disorder that affects the development of several body systems.
Sofia tackled each health challenge with a fierce determination to survive and, more than that, to enjoy her childhood. Her parents and the team at the CHOC Children’s Heart Institute supported her every step of the way, equally committed to her quality of life.
When the pre-teen needed a new pacing system (the cardiac leads from the first device had broken), Dr. McCanta advocated for the Micra TPS. He knew the benefits it would bring to Sofia, and other CHOC patients.
“The immediate benefit to Sofia is that she does not have another scar on her upper chest. The long-term benefit is she has no cardiac lead in her vein that could break, become infected or cause a blood clot,” explains Dr. McCanta. “When you consider the course of her entire life, the benefit of reducing complications of pacing is almost immeasurable.”
Sofia’s parents are proud of the part she played in the medical milestone. “She’s always been special, and here’s just one more thing that demonstrates how special she truly is,” says Sofia’s dad, Edgar. “We are thankful for people like Dr. McCanta and so impressed with the new technology. We feel truly blessed.”
When she’s not on her computer, Sofia loves watching videos and listening to Latin music. She’s outgoing with lots of friends and a bright future ahead of her.
Suddenly, the 16-year-old has a group of heroes in her life: the coach who resuscitated her on school campus and the CHOC team that treated Katie for three weeks and will continue her care as she navigates life with a newly diagnosed heart condition.
During a recent athletic conditioning class in school, Katie collapsed and went into sudden cardiac arrest.
Her trained and quick-thinking conditioning coach snapped into action and resuscitated Katie with CPR until paramedics could arrive and transport her to CHOC.
“It was the longest 10 minutes of my life,” said Greg Vandermade, Katie’s coach at Mater Dei High School who also credits other students for alerting him to Katie’s condition and calling 911, as well as fellow staff who assisted by obtaining an automated external defibrillator (AED) to shock Katie’s heart into a normal rhythm.
At CHOC, Katie continued to have irregular heartbeats that required further defibrillation and cardioversion, procedures that help restore the heart’s natural heart rhythm, said Dr. Anthony McCanta, a CHOC cardiologist.
Katie also went on extracorporeal life support, a treatment that takes over the heart’s pumping function and the lungs’ oxygen exchange until a patient can recover from injury. This allowed the CHOC Children’s Heart Institute team to continue to treat her life-threatening arrhythmias with medication, Dr. McCanta said.
Dr. McCanta performed an electrophysiology study procedure and implanted beneath Katie’s skin a subcutaneous implantable cardioverter defibrillator, a device that helps prevent sudden cardiac arrest in patients.
After Katie’s discharge and further testing, she was diagnosed with Arrhythmogenic Right Ventricular Dysplasia, or ARVD. A rare type of cardiomyopathy where the muscle tissue in the heart’s right ventricle is infiltrated and replaced by fatty tissue and scar tissue, ARVD weakens the heart’s ability to pump blood and makes the heart susceptible to life-threatening arrhythmias.
The diagnosis also means Katie, a cross country and track athlete, will need to give up running for good.
“It was hard at first,” she said.
But instead of sitting on the sidelines, Katie’s decided to pick up golf, a sport that’s compatible with ARVD.
Katie has even begun incorporating a golf swing into her physical therapy sessions at CHOC, and she had two clubs in tow as she, her family and coach Greg visited the CVICU recently.
There, Dr. McCanta and the CHOC team presented Greg with a plaque recognizing him for his swift response and efforts that surely saved Katie’s life.
“Coach Greg responded to Katie with CPR on the spot and saved her life that day,” Dr. McCanta said. “His heroic actions, and those of Katie’s schoolmates and staff, including obtaining and appropriately using the AED, are the reason that Katie is alive today.”
Katie’s story underscores the importance of being trained in CPR and in the use of AEDs, Dr. McCanta said.
“Having AEDs in schools and training staff and students in CPR with an AED are some of the most important interventions that we have in saving lives of young people experiencing sudden cardiac arrest,” he said.
Coincidentally, Katie’s own grandmother, a nurse and health services coordinator in the Irvine Unified School District, has collaborated with LEAPS and helped get AEDs installed on her district’s campuses.
“Never did I think though that this would happen to one of my own family members,” said Marcia, Katie’s grandmother.
A teenaged patient’s longtime arrhythmia has been repaired and her quality of life dramatically improved thanks to emerging technology and the skill of a CHOC Children’s cardiologist.
Lauren Flotman, 15, had experienced irregular heartbeats for years before Dr. Francesca Byrne, a pediatric cardiology specialist, diagnosed her with supraventricular tachycardia, or SVT, and Dr. Tony McCanta, a pediatric heart rhythm specialist, repaired the condition through radiofrequency ablation.
The episodes first surfaced when Lauren was about 8 years old and they began increasing in frequency as she aged. They’d occur without warning or pattern.
For Lauren and her family, the sudden attacks caused great concern. Not only was she drained and tired after an episode, but Lauren dreaded them happening, especially during a pep squad routine when her teammates were depending on her.
Lauren was elated to finally have a name for her condition.
“It was a huge relief for sure to have a diagnosis,” she says. “I always had to just describe the feeling because I didn’t have a name. Now I can say I have SVT.”
Lauren’s diagnosis was reached after a Holter monitor captured her heart racing at 220 beats per minute. Dr. Byrne referred Lauren to Dr. McCanta to discuss treatment options, which included anti-arrhythmic medications or an ablation procedure. After reviewing their options carefully, the Flotmans decided to pursue ablation.
For Lauren’s ablation, Dr. McCanta used a new technology called an intracardiac echocardiogram, or ICE, to create a three-dimensional map of the inside of her heart without using fluoroscopy (X-Ray radiation), enabling a catheter to apply radiofrequency energy to the precise location in her heart causing her SVT.
ICE technology involves a tiny ultrasound probe imbedded into a catheter that is advanced through the vein directly into the heart, allowing for very clear, accurate image quality. These ultrasound images then integrate with a three-dimensional electroanatomical mapping system, which acts like a GPS (global positioning system) for the catheters within patients’ hearts, to provide an accurate real-time shell of the inside of the patient’s heart. This allows the doctor to safely move catheters inside the beating heart without using radiation.
While radiofrequency ablation has become a safe and common treatment for SVT in children and adolescents since the mid-2000s, intracardiac echocardiography (ICE) has not traditionally been used in pediatrics due to the large-sized catheters. But when a smaller catheter was created, which was more suitable for the size of young patients, Dr. McCanta and the electrophysiology team from the CHOC Children’s Heart Institute were among the first in the world to routinely utilize the new technology in pediatric and adolescent patients.
“For a young, healthy patient like Lauren, increasing safety and minimizing the use of radiation are extremely important, while still being able to provide a cure for her arrhythmia with ablation” says Dr. McCanta.
After a few days of taking it easy following the procedure, Lauren felt back to her usual self – only without the constant fear her heart would suddenly begin racing.
“Our team loves utilizing advanced technologies like ICE and three-dimensional mapping to help children, adolescents, and young adults with heart rhythm problems,” says Dr. McCanta, “Seeing patients like Lauren get back to all of the things they love doing is why we do this!”
Since the procedure, Lauren has been vocal at church to educate her peers about being conscious and vocal about their health.
Happy Thanksgiving! My name is Karen Stapleton, and my son Noah is a patient at CHOC Children’s. As I prepare to celebrate the holidays with my family, I’m grateful we can be together since we have so much to celebrate. I’m also grateful for Noah’s many doctors and nurses at CHOC because without them, my son wouldn’t be alive.
Noah’s birth story
When I was 29 weeks pregnant with Noah, we learned that he had Down syndrome. Another prenatal ultrasound showed an abnormality in his heart, and we were referred to Dr. Pierangelo Renella, a pediatric cardiologist at CHOC, who diagnosed Noah with tetralogy of fallot, a serious heart defect that causes poor oxygenated blood flow from the heart to the rest of the body. I was scared, but having been a CHOC patient myself as a child, I knew my son would be in good hands.
On July 27 of last year our lives changed forever— Noah was born! I chose to deliver at St. Joseph Hospital in Orange so that my son could be as close to CHOC as possible. When he was born, there were so many doctors and nurses around. I saw Noah quickly enough to give him a kiss before he was whisked away to the Neonatal Intensive Care Unit (NICU) at CHOC.
Shortly after birth, Noah’s care team also diagnosed him with Apert syndrome, a genetic disorder that causes certain bones to fuse early. For Noah, that was his skull, fingers and toes.
It was a success, and 31 days after he was born, Noah finally came home! Weekly trips back to CHOC’s clinics included visits to gastroenterology, pulmonary, cardiology and craniofacial specialists. It was another team effort to prepare Noah for a second open heart surgery that he would eventually need.
But a few weeks later, Noah had respiratory complications, which lead to an emergency open heart surgery at just 2 ½ months old. Thanks to Noah’s cardiothoracic surgeon, Dr. Richard Gates, and Noah’s fighting spirit, he was able to come home shortly after surgery.
Celebrating Christmas at CHOC
Just days before Christmas last year, Noah had to be admitted to CHOC for respiratory failure. It was scary to see my baby sedated for 19 days. Dr. Juliette Hunt, a critical care specialist, recommended that Noah undergo a tracheostomy, where a small opening is made in his windpipe and a tube is inserted to help him breathe. Making a decision like that is hard and scary for a mom, but I had complete trust in Noah’s team, and if they knew it would help Noah breathe easier, then I knew it was the right thing to do.
After that, Noah started to thrive. He gained weight and became strong enough for his next open heart surgery with Dr. Gates. After a mere six days in the Cardiovascular Intensive Care Unit following this surgery, Noah got to come home again!
Even when Noah is doing well, sometimes it can be scary to care for him when he’s at home. During one of our hospital stays, I confided this fear in one of Noah’s favorite nurses, Karissa. She gave me specific tips on what to do during his tummy time and baths, and gave me the courage to care for my son. She encouraged me, and reminded me that CHOC wouldn’t advise me to do anything that wasn’t safe.
Noah’s first birthday
All of this is a lot for a little baby to go through before his first birthday, but Noah has always surprised us and pulled through. Celebrating his first birthday meant more than celebrating his first year of life; it meant celebrating every fight Noah had won over the last year, and it meant appreciating a milestone that at times we thought we might never reach. We decided a super hero theme was perfect for his party because we think of Noah as our little super hero.
After his birthday, Noah continued to flourish and grow! He started rolling over and actively playing, and he has not stopped smiling.
This progress allowed us to prepare for his next major surgery, a frontal orbital advancement, to reshape his skull and forehead that has fused too early due to Apert syndrome.
Before surgery could begin, the doctors needed to cut Noah’s hair to make a safe incision in his skull. We marked another one of Noah’s milestones at CHOC— his first haircut!
Noah has more hurdles and additional surgeries ahead of him, but even with how much he’s fought, he continues to smile. He’s not cranky and he doesn’t cry. He’s enjoying every single day he gets to be here – and that’s the life he has taught me to live too.
If Noah’s care team ever needs a reminder of why they do what you do, I tell them: My son would not be here today if it were not for each and every one of them here at CHOC. And for that, my family will be forever grateful.