Extracorporeal Membrane Oxygenation | ECMO

ELSO Patient & Family Support Resources

Welcome to the ELSO Patient & Family Support page. ELSO provides resources and community for those that are, or have been, impacted by extracorporeal membrane oxygenation (ECMO) and related technologies and services. We hope to complement resources that may be available through health systems and other means, while also creating a space to offer support for patients and families.

This information is not to be used in place of what your doctor says. Please know that your situation may be different than others that your see on this page

What is ECMO?

What is ECMO?

Research Corner for Patient & Family Support

Research Corner for Patient & Family Support

Ariel's Story

From patient to aspiring Physician

“Yes, like the Little Mermaid,” she laughs, expecting the Disney movie reference that has come her way for the past two decades. However, since her birth the 22-year old’s identity has been immersed in something much more meaningful than anything under the sea. Just ask Ivor Berkowitz, the pediatric intensivist at Johns Hopkins Children’s Center who remembers the “come urgently” call from a fellow in the pediatric intensive care unit (PICU) like it was yesterday: A newborn only hours old with meconium aspiration and severe respiratory failure had just been transferred from an outside hospital to the PICU. The baby was cyanotic, her clinical condition dire.

“Let’s get her on ECMO,” replied Berkowitz, referring to extracorporeal membrane oxygenation, the then-relatively new lifesaving therapy for babies in severe cardiorespiratory failure.

As Berkowitz arrived in the ECMO suite, PICU staff were assembling the equipment and the surgeon was rushing in. Then Ariel Obioma Egbunine was placed on ECMO, in which blood is pumped outside of the body to a heart-lung machine that removes carbon dioxide and sends oxygen-filled blood back to tissues in the body. Berkowitz took a breath: “For me, there was not a more thrilling sight than after the last sutures had been tied and the surgical drapes had been removed, to behold a now beautiful pink, well-oxygenated and hemodynamically stable baby, when just 45 minutes before, a moribund blue-gray baby was struggling for life.”

Looking back, Berkowitz says, “These events all took place many years ago, yet I remember them clearly.”

They have stayed with Ariel, as well, after she learned about them from her parents in their Baltimore home at an early age. After four days on ECMO and a long stay in the PICU and the Children’s Center, she spent 68 days in the neighboring Kennedy Krieger Institute to treat neurocognitive deficits, and underwent 2 ½ years of follow-up appointments and scans.

“They told me that I had difficulty feeding and crawling was delayed,” says Ariel. “After that, I was fine.”

That very early life experience would ignite a passion for science and medicine later on. As a child, she had been influenced by white lab coats and large medical texts in her father’s office, along with Saturday trips to the Maryland Space Grant Consortium Observatory. She had an aptitude for math and an obsession with natural science that required nurturing. It was only natural that in her teen years she would dive deeper into her medical records for answers to questions regarding her own medical history, including a conclusive diagnosis of what happened to her in utero: “I set out on a mission to find the answers to such unsolved mysteries.”

The more she learned about ECMO, the greater her curiosity grew about the issues confronting critically ill children. This led her to write about her ECMO experience for a required graduation paper and a speech she gave before her entire middle school.

Not much later, at the PICU’s annual holiday party, Berkowitz noticed a teenager and her parents walking toward him. Following introductions, they hugged and reminisced about Ariel’s coming into the world 16 years earlier. Over the years, Berkowitz had met other patients he had treated as babies, but considering Ariel’s condition and survival, he felt both overwhelmed and overjoyed. Then he heard about her plans.

“My former patient had become a straight-A high school sophomore, with a mind set on a career in medicine — to be a pediatric anesthesiologist, no less,” says Berkowitz, who offered his support.

One week later, Ariel met with Berkowitz in his office to discuss a potential project for her junior-year STEM (science, technology, engineering and mathematics) research requirement. Her idea was to find out whether ECMO was indeed a proven therapy for neonates, children and adults with respiratory failure, which became her focus for the next nine months. While Ariel impressed Berkowitz as intelligent and motivated, he wondered how she would do without an in-depth exposure to human biology.

“How would she begin to understand and interpret the medical literature regarding ECMO without understanding cardiac and respiratory physiology and blood flow, pulmonary hypertension, the transitional circulation of the newborn, and basic biostatistics?” Berkowitz asks.

That challenge led to weekly one-on-one didactic sessions with Berkowitz, during which Ariel had a biology textbook at her side. This evolved into a year-long on-site research internship related to ECMO — and what Berkowitz considers one of his most memorable mentor-mentee relationships. So memorable, that he chose the experience as the subject of an article — “The Joy of Mentoring.” Published in CLOSLER, or “closer to Osler.” The physician website pays tribute to William Osler, one of the founding professors of The Johns Hopkins Hospital, who emphasized that all clinical education should begin and end with the patient.

“I loved teaching this bright and motivated student as she slowly mastered the work and finally wrote a beautiful paper as her deliverable,” says Berkowitz.

The best part of their days together, Berkowitz adds, was taking Ariel to the PICU to observe patients on ECMO — just like her at a much younger age. They discussed many medical issues, including the impact of critical illness on the family and ethical challenges in modern medicine. As the giver, Berkowitz felt he got as much, if not more, out of the relationship — which is still ongoing — than the receiver.

“Paying it forward was a real thrill and enormous reward for me,” wrote Berkowitz in his article. “Taking two hours each week out of my busy schedule to mentor this student was refreshing and rejuvenating, and made me think much about what I cherish as a practitioner. My joy in medicine had been rewarded twofold — I had taken care of her and her family when she was an infant, and then had been blessed to reconnect with her 16 years later as a mentor, role model and teacher.”

For Ariel, her preceptor-guided research project and front-seat experience in the intensive care world, along with the ongoing encouragement of her father, a clinical pharmacist, gave her a more definitive vision of her future. She not only wanted to be a pediatric critical care specialist, but also to serve people most in need of health care — those with economic, cultural and linguistic challenges that create barriers to health care access, and women and children, who, research shows, suffer the most in medically underserved areas.

“Speaking to my parents about my own ordeal and the selfless professionals who came to my aid was formative, helping to instill in me two core values: a desire to advance our medical knowledge to help provide answers in the face of uncertainty, and to apply that knowledge to serve those in need,” says Ariel.

After her senior year she was accepted into the STEM BUILD (building infrastructure leading to diversity) program at the University of Maryland, Baltimore County, the college of her choice. Spurred by her experience with Berkowitz, she found other science-minded mentors in college, including Viknesh Sivanathan, senior program lead of the Science Education Alliance at the Howard Hughes Medical Institute. Under his tutelage, she executed lab techniques necessary to conduct procedures related to phages, an abundant type of virus that infect bacteria, and conducted growth assays and antibiotic susceptibility experiments to optimize protocols for isolating Arthrobacter-infecting viruses. She also worked with a team of researchers to annotate the genome of a recently isolated phage called EasyJones, capable of infecting mycobacterial species.

“The archive of phages that my work contributes to, the Actinobacteriophage database, serves as a source for lifesaving phage therapies,” says Ariel. “This research opportunity exposed me to the fundamentals of basic microbiology and allowed me to witness the process of transforming scientific knowledge into clinical application.”

Four years later, as a graduating biochemistry and molecular biology major, she began applying to medical schools. Around the same time, Sapna Kudchadkar, associate vice chair for research in the Johns Hopkins division of pediatric anesthesia and critical care medicine was looking for a research coordinator. Recalling Ariel shadowing Berkowitz in the PICU and learning about her pre-med path along with her determination to become a critical care specialist, she reached out.

“It’s very unusual to ask a recent college graduate to come on board as a full-time research coordinator, but she’s meant for big things,” says Kudchadkar. “She was immediately so excited — her eyes lit up. Since then, she’s been to every single session and has been exposed to such a wide breadth of what we do here.”

Noting Ariel’s personal story, Kudchadkar adds, “The coolest part of it, she’s a Baltimore City girl. She was born here, stayed here, and now she’s coming back.”

In the PICU, Ariel has been assisting critical care specialists such as James Fackler, who is conducting studies on sepsis. In an endeavor echoing her own history, she has been working with Melania Bembea, who is leading a longitudinal study of biomarkers of brain injury in critically ill children on ECMO.

“The overarching goal is to improve neuromonitoring during this critical illness and especially during the vulnerable time babies are on ECMO, and to improve long-term neurologic and quality of life outcomes,” says Bembea, director of the Children’s Center ECMO Program.

Today, as she awaits word from her top-choice medical school, Ariel is delighted to be where she is — contributing to research efforts in critical care medicine, working at the Children’s Center, and volunteering with various organizations, including the University of Maryland, Baltimore, Cure Scholars program, which helps students in underserved areas of Baltimore navigate an academic path to research, STEM or health care professions. Like her mentor Ivor Berkowitz, she’s reaping the rewards of giving back.

“The satisfaction I receive from helping others is self-fulling and rejuvenating,” says Ariel. “Motivating others to excel and thrive in my pursuit of comprehensive academic excellence is both humbling and rewarding.”

Although she’s been swimming upstream for some time — in a way, since birth when her life was looming in the balance — Ariel knows she’s no mermaid. Who is she? She refers to that speech she gave back in middle school.

“The speech is meant to be personal while displaying courage and tenacity” says Ariel. “Thus, I decided to write about my ECMO experience, and how it shaped me into the young woman I am today.”

At the time, Dr. Ivor Berkowitz decided to treat Ariel with Extracorporeal Membrane Oxygenation (ECMO), a relatively new lifesaving therapy for babies in severe cardiorespiratory failure.

Basically, ECMO allows blood to be pumped outside of the body into a heart-lung machine that removes carbon dioxide, which in turn sends oxygen-filled blood back to tissues in the body.

After just 45 minutes, Dr. Berkowitz noticed the baby who once was gasping for air was stable and well-oxygenated.

Ariel wasn't out of the woods yet, she remained hospitalized for several days, followed by a two-plus month stay at the Kennedy Krieger Institute to treat neurocognitive deficits, which led to difficulties with feeding and crawling.

As she grew into her teens, Ariel wanted to learn more about her medical history.
Ariel's curiosity led her to write a middle school graduation paper and speech about her ECMO experience.

Later at the PICU’s annual holiday party, Ariel got the chance to reunite with the physician who helped save her life.

Ariel and Dr. Berkowitz would go on to discuss another project that delved into whether ECMO was a proven therapy for neonates, children and adults with respiratory failure.

The two then decided to meet weekly. Ariel was able to build that into a year-long internship allowing her to personally observe other PICU patients on ECMO.

The internship left Ariel wanting to become a pediatric critical care specialist.

Following senior year, Ariel was accepted into the STEM BUILD (building infrastructure leading to diversity) program at the University of Maryland, Baltimore County, where she learned the process of transforming scientific knowledge into clinical application.

After graduating as a biochemistry and molecular biology major, it was time to apply for medical schools.

Around that same time it just so happened that Johns Hopkins was looking for a research coordinator in their division of pediatric anesthesia and critical care .

Although it was an unusual opportunity for a recent college graduate, Ariel's time shadowing Berkowitz in the PICU made her the right fit for the job.

Now as she awaits acceptance to her choice of medical school, Ariel's life has come full circle.

She currently assists Johns Hopkins critical care specialists in studies on sepsis and biomarkers of brain injury in critically ill children on ECMO.

With appreciation to Johns Hopkins Medicine for sharing this story. Link to Story: https://www.hopkinsmedicine.org/news/articles/ariels-story


"They told me that I had difficulty feeding and crawling was delayed "


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