Ethan Vargas didn’t plan it this way, but in mid-June, the 6-year-old celebrated his promotion from kindergarten surrounded not only by his mother, father, and two older sisters, but also his extended family at CHOC.
An emergency sent Ethan, who was born with a congenital heart defect and has been in and out of heart surgeries and doctor’s appointments since he was 8 days old, back to CHOC in May 2023.
He returned home in June 2023, the day after the surprise party that also was attended by Violeta Hernandez, principal of Ethan’s elementary school in Whittier, and Ethan’s teacher, Irma Ramos-Flores.
They and other school staff members know Ethan very well. During the academic year, he visits the administrative office daily for feedings through a gastrostromy tube.
As usual, Ethan was all smiles during his promotion celebration, which the Cherese Mari Laulhere Child Life department at CHOC captured on video.
“Ethan is an incredible young heart hero,” says Dr. Nita Doshi, his primary cardiologist. “One thing about Ethan is his beautiful disposition has been the same ever since he was born. He has the biggest smile on his face every single time you see him, sometimes irrespective of how tough his journey has been. His smile is something that has remained consistent throughout, even in the face of challenges.”
Rare heart defect
Ethan was born with congenital heart disease not detected in utero.
He was born blue – a condition called cyanosis, which occurs when there isn’t enough oxygen in the blood – and transferred to CHOC when Dr. Doshi was on duty.
Dr. Doshi diagnosed Ethan with a rare heart defect. He was born with one pumping chamber instead of two. Because the structures on the right side of Ethan’s heart were small and underdeveloped, there was no connection for blood to flow from his heart to his lungs.
Approximately one in 50,000 newborns have this condition, which cannot be cured but only managed with a minimum of three heart surgeries during infancy and early childhood, as well as lifelong surveillance. The surgeries help to rearrange the blood flow to the lungs, and allow the single pumping chamber to pump to the body.
Ethan had the first of these surgeries at 8 days old, the second four months later, and the third – known as a Fontan procedure – in 2020.
Dr. Richard Gates, a congenital heart surgeon and director of cardiothoracic surgery at CHOC, and Dr. Joanne Starr, also a congenital heart surgeon and the director of CHOC’s Extracorporeal Life Support Program, or ECMO, performed all three of Ethan’s surgeries.
Interventional pediatric cardiologist Dr. Gira Morchi, division chief of cardiology and co-medical director of the Heart Institute, performed heart catheter procedures on Ethan to help prepare him for each surgery.
A scary complication
Several complications can happen when a child has a unique heart like Ethan, and he experienced a scary one on May 13, 2023.
Ethan was at home playing with his sister when he began coughing up blood and turning blue. He was transported by ambulance to CHOC from a hospital near his home.
CHOC pediatric critical care specialist Dr. Adam Schwartz consulted with Dr. Starr for possible ECMO because despite all interventions, Ethan’s oxygen levels were too low and his heart function was deteriorating.
In the middle of the night after explaining the situation to Ethan’s parents, Ethan was placed on ECMO via the artery and vein in his right neck. This life-saving technology is for the sickest of patients. It takes over the heart’s pumping functions and the lung’s oxygen and carbon dioxide exchange.
“It was very challenging because of the way Ethan’s anatomy was constructed after the Fontan surgery,” Dr. Starr recalls.
Ethan’s mother, Ivette, father, Christhian, and sisters Miah, 11, and Abigail, 10, were with him during this critical period. Ivette celebrated both Mother’s Day on May 14 and her birthday on May 15 when Ethan was hooked up to the ECMO machine.
Ethan persevered and was able to separate from the ECMO machine on May 18.
“There are patients who would not have survived the bleeding and complications of ECMO,” Dr. Doshi says, “but he championed through it.”
The emergency that sent Ethan back to CHOC on June 3 was, again, bleeding.
In a six-hour procedure on June 4, a multi-disciplinary team of CHOC doctors, nurses, and others led by Dr. Morchi performed a heart catheter procedure on Ethan that included coiling blood vessels to stop the bleeding. The ECMO team stood by in the event he may need their support again.
“Ethan is amazingly resilient and his family is so dedicated and invested in his care,” Dr. Starr says.
‘Super grateful’ for excellent care from CHOC
Ethan’s parents say his medical journey has been “overwhelming” at times, but CHOC has been there to make things as best as possible.
“We’re super grateful they did everything for us and made our daughters comfortable, too,” Ivette says. “We were beside ourselves with worry. A thank you will never be enough to thank all the doctors and nurses that helped Ethan and our family during this difficult time. We really thank everyone from the bottom of our hearts.”
Dr. Doshi, who is very bonded to the Vargas family, saw Ethan in her clinic on June 23.
“He’s one of my best buds and has been since he was born,” Dr. Doshi says.
Two questions
Ethan, who brought his green dinosaur doll, Yoshi, for the visit, was doing great.
He had two questions for Dr. Doshi: Can I swim, and can I go on a roller-coaster at Knott’s Berry Farm?
In six weeks, Dr. Doshi told him.
As Ethan grows, he faces the risk of complications, Dr. Doshi says.
“He will always be monitored for long-term complications of his unique circulation and if they arise, we will consider medicines and other procedures,” Dr. Doshi says. “Based on his journey, there are some patients like Ethan who may go on to heart transplant evaluation.”
For now, Dr. Doshi and her CHOC colleagues – and Ethan’s family – are enjoying every moment with him.
So are others.
The evening before his clinic visit with Dr. Doshi on June 23, Ethan and his dad were at a park. They stumbled across a magic show. The magician needed a volunteer. He said he would select the kid with the biggest smile.
To no one’s surprise – not his parents, not his family at CHOC – the kid that was selected to go up on stage was Ethan.
“He is beautiful, sweet, compassionate, and he is very bonded to other human beings,” Dr. Doshi says. “Despite such hardships, he has some magical powers in terms of being able to show positivity and strength. It inspires you to follow his lead.”
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At CHOC, our highly specialized and board-certified pediatric cardiology team and cardiothoracic surgeons provide patients and families with advanced cardiac services.
