Twenty-four years ago, Dr. Michael Muhonen, who had started his pediatric neurological practice at CHOC only a year earlier, treated a baby born with what essentially was a traumatic brain injury.
The infant boy, born at 23 weeks and weighing 3 pounds, suffered an intraventricular hemorrhage – bleeding inside and around the ventricles, the spaces in the brain containing the cerebrospinal fluid.
It was a grade-four bleed – the worst. Dr. Muhonen gave the boy an 80-percent chance of having some form of serious neurological dysfunction such as cerebral palsy. The newborn also had hydrocephalus, which required a shunt to be implanted in his head to drain excess fluid to his abdominal cavity.
That baby, Eric Rhee, is now 24.
Recently, over coffee, Eric talked about his plans this year: He’s moving to Bethlehem, Penn., to attend the Temple/St. Luke’s School of Medicine.
“Wow, I would never have predicted this,” Dr. Muhonen says, with a wide smile. “I’ve seen many grade-four bleeds in infants, but I don’t recall any who have succeeded to the degree that Eric has.”
Eric, who since summer 2019 has been working as a medical scribe at CHOC and, with Dr. Muhonen, on a research paper on shunts like the one that will stay in his body for the rest of his life, is a bit surprised himself.
Of being accepted into medical school, Eric says: “I just want to be consistent, reliable, and efficient at what I do, learning from superiors who spent years upon decades refining their craft.”
Dr. Muhonen attributes his remarkable recovery, in part, to the high-quality neonatal care that Eric received during his three-month stay in CHOC’s NICU as an infant.
“The odds were extremely stacked against him,” Dr. Muhonen says. “He’s unique. It speaks to the kind of person he is that he’s been able to graduate from high school and UC Berkeley with honors and go on to medical school. I’m humbled that I could be a minor part of his journey.”
Shunts like the one Eric has for his hydrocephalus typically get replaced every five years due to corrosion and other issues. Eric had his replaced only once when he was a child, and it wasn’t until December 2016 when he had to have it replaced again. Dr. Muhonen, who has seen Eric regularly over the years, consulted with neurosurgeons at a hospital near UC Berkeley before the decision was made to replace the entire shunt.
After graduating from UC Berkeley in 2019, Eric started working at CHOC while studying for the MCAT.
“One of the things I liked about CHOC growing up, I always felt like I was at home,” Eric says. “Even though I felt like I was in a very vulnerable place, I was always at ease.
“They’re kind and really good at what they do,” he says of CHOC clinical and related staff. “I want to be like that, too. Everyone at CHOC is a master of their own craft and essential to accomplishing a bigger objective. Every person is important.”
Eric took the MCAT in January 2020 and found out in December that he got accepted into Temple/St. Luke’s School of Medicine.
Dr. Muhonen has no doubts Eric will make a great doctor.
“It will be a physician like Eric who will make a great discovery,” he says. “Instead of relying on a shunt to treat hydrocephalus, maybe he’ll make a discovery to obviate the need for a shunt and have the brain internally drain water on its own somehow.”
Says Eric: “I just want to be trustworthy and dependable while making meaningful connections and having an impact on others.”
The patient was 6, a boy – the same age as a pediatric general and thoracic surgeon Dr. Peter Yu’s son, “P.K.”
The patient’s kidney cancer had spread to his lungs.
When Dr. Yu recently performed surgery on the boy, he caught himself thinking of P.K., whose full name is Peter Kai Yu – a ball-sport-loving kid with grown-up tastes in food such as sushi.
“When I looked at him,” Dr. Yu recalls of the patient, “I saw P.K. I thought, ‘What would I do for my son?’ And I would do anything for him.”
With Father’s Day this Sunday, Dr. Yu and Gene Paredes, a neonatal intensive care unit (NICU) nurse at CHOC at Mission Hospital, reflected on the challenge of balancing their demanding and often emotionally exhausting work with fatherhood.
Both Gene and Dr. Yu are married with three children.
Both say their professions make them better fathers, and both say having kids makes them better at what they do.
Ample time with children
Gene has been a father almost as long as he’s been a nurse.
His son, Gabriel, is 20. Gene has been a nurse at CHOC for 21 years (23 years overall).
Gabriel is in college, as is his 18-year-old sister, Gillian. Gene’s other daughter, Eliotte, 14, just started high school.
Even though his parents both were nurses, Gene never grew up thinking he wanted to be one, too.
But the Mission Viejo native did just that, joining CHOC in 1999 after completing training for two years in a neonatal intensive care program in Berkeley.
Like his father, who worked three 12-hour shifts per week, Gene has been able to be involved in his kids’ lives because of his work schedule.
“Working three days a week,” Gene says, “I was one of the few dads who were able to be involved in mid-week classroom activities at my kids’ schools. That was kind of rare. You didn’t see a lot of dads there.”
Gene and his wife, Chantelle, who used to teach, decided that the benefits of her being a full-time mom outweighed the challenges of being a single-income family.
And that decision has paid off.
Over the years, Gene and Chantelle have enjoyed travelling with their children.
They did an RV road trip up the coast to the Pacific Northwest and have been to various national parks and states throughout the U.S. Two years ago, they vacationed in Paris and London.
At CHOC Mission, where for years he was the only male nurse, Gene works throughout the hospital because he has special training in placing PICC (peripherally inserted central catheter) lines, which are used to dispense medications and liquid nutrition. At CHOC Mission, he also performs ultrasound-guided IV placements.
For 2 ½ years, Gene also picked up shifts at CHOC’s campus in Orange in the main NICU and Small Baby Unit.
But he spends most of his time caring for sick babies in the NICU at CHOC Mission.
“I think being in healthcare, you realize there are a lot of things that can go wrong in childhood, such as illnesses and accidents,” Gene says. “I definitely had an appreciation for having healthy children. Knock on wood, I’ve never had to bring any of my kids to the hospital.”
Being a nurse has huge benefits when raising kids, Gene says.
“I approached fatherhood with a lot of confidence,” he says. “I taught my wife how to give our babies a bath. And she never worried about the kids getting sick. She was like, ‘Gene’s got this. He knows babies.’”
Being a male and a father, Gene brings a unique presence to the NICU.
“A lot of the focus tends to be around the moms and the connection they have with their babies,” he says. “I think me being a male allows fathers to have someone to connect with. I change diapers, I feed the babies – I do all the hands-on things. I like to empower fathers to get in there and get very involved — to make them feel they can be as involved as much as the moms.”
Gene is known throughout the hospital for his calm demeanor in stressful situations.
“As a nurse and father, I hope that my calm energy and presence would bring comfort to parents experiencing the stress and unknowns of their child’s hospitalization,” he says.
On Father’s Day, Gene and his family will host a large afternoon feast with relatives at a favorite park in Dana Point.
“Then we’ll take a sunset walk on the beach,” he says.
Off cooking duty this Sunday
Dr. Yu usually relieves his wife, Jean, of cooking duties on weekends, when he’s off his hectic weekly work schedule that often totals 80 hours.
This Sunday will be different.
“I told him I would cook for him,” Jean says, adding: “He’s a very good cook.”
Being a former clinical nurse, Jean totally gets the demands of her husband’s profession.
“I get what the daily grind is like and things that may come up,” Jean says. “As a family, we try to cherish every moment, even just little things like watching a show together at the end of the day. He can’t make every event, but the kids are very understanding and very aware he’s probably helping out a sick baby or a sick kid, and they don’t hold that against them.”
The two met in the surgical ICU at the medical center at UC San Diego School of Medicine, where Dr. Yu completed his internship, residency, and research fellowship in general surgery. Jean was a surgical ICU and trauma nurse there, and they met while taking care of a very sick patient.
Married for 11 years, the Yus have three children: Max, 10; Sasha, 8; and P.K. They dated for two years before marrying. Dr. Yu proposed to Jean in Nigeria while both were on a surgical mission.
Almost every day, Dr. Yu awakes at 4:30 a.m. to hit the pools. He’s an avid swimmer who will compete in the U.S. Masters Swimming National Championships in Greensboro, N.C., on July 26.
Max also loves to swim, and is a voracious reader.
“He’ll read a Harry Potter book in one day,” Dr. Yu says.
Sasha loves to dance and is a huge avocado fan.
Dr. Yu hits the sack around his kids’ bedtime.
“Usually 8:30 – 9 p.m. is really pushing it,” Jean says.
Dr. Yu says once he’s at home, he strives to be present with his children. Things have been even more hectic than usual at work recently, with the just-opened Fetal Care Center of Southern California, of which Dr. Yu is co-medical director.
“Our family works very well,” Dr. Yu says. “The credit really goes to Jean. She’s the chief operating officer of our family. I am so blessed to have her. She really allows me to work. Being a nurse, she knows how important it is for me to take care of these kids (at CHOC). She never gives me grief when I have to work, and that’s huge.”
Dr. Yu has been at CHOC for six years. Jean worked at CHOC for two years in the post anesthesia care unit (PACU).
“Jean was an amazing nurse,” Dr. Yu says. “I think she could have been a high-level nursing leader, but she sacrificed her career to follow me.”
Hospital work lends perspective to mishaps at home, such as a scraped knees, Jean says.
“Things that happen at hospitals can be completely life-changing for families,” she says. “So, when things happen at home, we don’t get too alarmed.”
Dr. Yu, whose parents emigrated to the United States in the 1960s, was born in America, and spent most of his early years in St. Louis, Mo. He has an older brother, David, also a physician, who adopted a boy from China who now is 10.
Dr. Yu says he became sold on California after attending Stanford University as an undergraduate, majoring in psychology.
It’s a good thing Dr. Yu has a ton of energy. He will need it to continue his balancing act of caring for sick and injured kids at CHOC and tending to his three young kids at home.
Says Dr. Yu: “You have to be present in the operating room, and you have to be present for your family.”
And Dr. Shafer, who joined CHOC on Sept. 1 after finishing a fellowship at Texas Children’s Hospital (TCH), arrives here with some pioneering result already under his belt – with more to come.
In one of the first such large studies of its kind in neonatology, Dr. Shafer is researching the prevalence of diagnostic errors and the ethical responsibilities of providers to disclose such errors to families of impacted NICU patients.
“Studying and quantitating diagnostic errors is a relative new science in the field of neonatology,” said Dr. Vijay Dhar, medical director of CHOC’s NICU, and division chief, Neonatology, at CHOC/UCI. “Grant has been an outstanding addition to our growing young faculty in the division.”
In March 2020, Dr. Shafer, with a TCH colleague, authored the paper “The Ethics of Disclosing Diagnostic Errors: What is the Researcher’s Duty?” that was published in JAMA Pediatrics, a monthly peer-reviewed medical journal of the American Medical Association.
And in late October, Dr. Shafer was one of eight former distinguished fellows who spoke on a panel before a global international audience at the Society to Improve Diagnosis in Medicine’s (SIDM) Diagnosing Errors in Medicine 13th Annual International Conference.
“To me, this research is interesting because it’s about how we provide the care we provide,” Dr. Shafer said. “It’s the kind of research that I really enjoy. Some people enjoy benchwork, some people enjoy working in the lab, some enjoy clinical studies.
“I really enjoy research that looks at the systems in which we practice medicine and how that impacts the care we provide, and diagnostic errors encapsulates all of that,” he added. “But it’s a field that we really haven’t studied yet. There’s just not a lot of information out there. All the data we’re finding is new to everyone.”
Earned a master’s in English Literature before becoming a doctor
Dr. Shafer, whose parents are from Hawaii, grew up in Denver. His mother, Andrea, is a retired school administrator and his father, Duane, worked in finance. He has a younger sister who runs a CrossFit gym in Kansas City with her husband.
Dr. Shafer earned bachelor’s and master’s degrees in English Literature from Wayne State University in Detroit. He went on to earn his medical degree from the University of Cincinnati College of Medicine and completed his pediatrics residency at University of Texas Southwestern.
At Baylor College of Medicine at TCH, Dr. Shafer completed a neonatal-perinatal medicine fellowship and, over the last year, also completed a second research fellowship in diagnostic excellence through SIDM.
In his JAMA Pediatrics paper, Dr. Shafer and co-author Dr. Frank X. Placencia probed the duty of a researcher performing retrospective medical reviews to disclose diagnostic errors. They concluded that because researchers are outside the patient-clinician relationship, the researcher is not ethically obligated to disclose a diagnostic error directly to a patient with whom they have no formal relationship.
However, Drs. Shafer and Placencia concluded, there is potentially a responsibility to discuss the error with the treating clinician, who then assumes the responsibility of contacting the patient.
Elaborating on this ethical framework during his SIDM panel presentation, Dr. Shafer noted many researchers feel uncertain how to proceed when they come across a diagnostic error that potentially could cause harm to a patient. Because of the sensitive nature of the information, Dr. Shafer recommended that it be delivered to the clinician in a structured setting.
Dr. Shafer said with hard numbers about diagnostic errors in NICUs still years away, a lot of research remains to be done.
“It’s widely acknowledged that diagnostic errors occur in the NICU, but we don’t know how often or how much harm they are causing, which means we can’t try to make things better,” he said.
And making things better – building on CHOC’s already sterling reputation in the field of neonatology — is the whole point, he added.
“I think this is the right place and right time to really push this research forward,” Dr. Shafer said. “I’m humbled and excited to have the opportunity to provide clinical care to babies here in the NICU at CHOC as well as research how we can continue to improve the diagnostic care we provide moving forward.”
After years of planning, CHOC’s neonatal intensive care unit (NICU), in a partnership with UC Irvine Health, has hired its first senior fellow in neonatal cardiovascular ICU and hemodynamics – how the heart and blood vessels work together.
The fourth-year fellowship position is one of only two such ones in the western U.S. and the first-ever senior level fellowship at CHOC in any specialty, said Dr. Amir Ashrafi, a cardiac-neonatologist at CHOC and fellowship program director.
“It’s a really big deal,” he said. “We’re really establishing our excellence in this field.”
Neonatal cardiac intensive care is a newly emerging subspecialty within neonatology whose primary goal is to enhance the cardiovascular care of newborns with structural heart disease and/or hemodynamic instability.
“Medical information is increasing at such a fast rate, we are at the point where doctors need to sub-sub specialize,” Dr. Ashrafi said. “Here in CHOC’s NICU, we don’t only have neonatal intensive care doctors, but also we have neonatal cardiac intensive care doctors.”
A senior fellowship is one granted to a sub-sub specialist, and such positions are typically reserved for the most elite programs in the country, Dr. Ashrafi said.
“With this fellowship, we’ll start training the future generation of highly sub-specialized doctors who will practice state-of-the-art care for the sickest babies in the hospital,” Dr. Ashrafi said.
Following a selection process in which young neonatal intensive care physicians from around the world applied, the fourth-year fellowship position in Neonatal Cardiovascular ICU & Hemodynamic has been awarded to Southern California native Dr. Ziad Alhassen, 33, who currently is in the Neonatal-Perinatal medicine fellowship program at UC Davis Medical Center in Sacramento.
“I’m definitely excited and feel blessed to have the opportunity to work with world-class physicians at CHOC and to learn as much as I can from them,” said Ziad, whose fellowship begins July 1, 2021.
Dr. Anjan Batra, vice chair of the UC Irvine School of Medicine’s Department of Pediatrics, joins Dr. Ashrafi as associate director of the fellowship. The other two associate program directors are Dr. John Cleary, associate director of the neonatal-cardiac ICU at CHOC, and Dr. Wyman Lai, assistant division chief of cardiology, co-director of the cardiac institute, and director of the echocardiography lab at CHOC.
Ziad, who is married with two young children, grew up in West Covina. He received his medical education at the Royal College of Surgeons in Ireland, Bahrain (RCSI-Bahrain) and has been licensed with the American Board of Pediatrics since October 2018.
Ziad said he’s excited to serve CHOC’s patient population and is especially eager to improve his understanding of CHOC’s extracorporeal membrane oxygenation (ECMO) program, a heart and lung bypass machine reserved for babies with complete failure of their cardio-respiratory system. Part of Ziad’s responsibilities as a senior fellow will be managing all ECMO cases in the NICU.
“Neonatal-cardiac intensive care is something I’ve always wanted to do,” Ziad said. “During my residency, I found myself gravitating toward patients who were critically unstable and required intensive care. It is eternally rewarding to see them get better.”
Ziad’s father is a physician who specializes in general surgery. Ziad has five siblings and he is the second among them to become a practicing physician.
Baby Hope looked into her mother’s eyes and gurgled.
Four days short of turning 9 months old, wearing a white onesie with the words “Best Gift Ever” on the front, she made more baby talk.
“You’re always a big chatterbox – what are you saying?” her mother, Elizabeth “Becca” Wyneken, said as she smiled and stared into Hope’s blue eyes.
Becca and Hope endured a lot to get to where they are now — a happy and very grateful mom and a relatively healthy 9-month-old baby girl whose light-brown hair is just starting to fill in.
The odds were stacked against Hope when she was born prematurely at 31 weeks and five days, weighing just 2 pounds, 3 ounces. Today, Hope is alive thanks to a team of doctors, nurses and others who cared for her throughout a four month stay on CHOC’s neonatal intensive care unit (NICU) and cardiovascular intensive care unit (CVICU).
Born with a complex heart disease, as well as only one kidney and defects on her right leg and foot, Hope’s cardiac neonatologist, Dr. Amir Ashrafi, pegged her chances of survival at between 20 and 30%.
When Becca first set eyes on Hope a couple of days after she was born, she was very concerned about her baby’s health.
“Don’t worry, Mom,” Dr. Ashrafi told Becca that day. “I think we can help her.”
It would take an extensive collaboration between highly regarded cardiovascular interventionalists, some of whom were consulted at hospitals as far away as London, to do so.
And it would involve a high-risk procedure never performed on a baby so small at CHOC.
Grim news at 20-week scan
At 18 weeks pregnant, Becca, a teacher’s aide, went in for a checkup. Blood tests showed her baby had a high risk for Down syndrome and spina bifida.
Two weeks later, a scan of her baby’s anatomy revealed other potential problems.
Her baby had no kidneys, Becca was told. She appeared to have no bladder, no right leg, no lungs, issues with her bowels, and a heart defect.
“I don’t think I stopped crying for the rest of the day,” Becca recalls. “It was horrible.”
She couldn’t drive home from the clinic. A friend had to pick her up. That night, Becca had dinner with her mother and aunt.
Later, lying beside her mother, Becca cried.
“I can’t believe this is happening,” she said.
She felt a poke in her belly.
“Over and over again, when I got upset, she would poke me,” Becca said.
At that moment, she decided on a name for her baby.
“Hope,” Becca told her mother.
Second opinion reveals true complications
Becca got a second opinion about her unborn baby’s condition.
Her baby was missing a kidney and had a leg defect, she was told. Most seriously, Becca was told, she had a defect on her right ventricle, the chamber within the heart responsible for pumping oxygen-depleted blood to the lungs.
Hope’s aorta and pulmonary artery that carry blood away from the heart hadn’t developed properly. She had a hole in her heart as well as one in her left superior vena cava, a vein that helps circulate deoxygenated blood back to the heart. These holes caused blood to drain incorrectly; Hope would need a team of doctors to correct the blood flow.
“Being very small with complex heart disease, your options are very limited with what you can do and the timing of any procedures,” said Dr. Ahmad Ellini, Hope’s primary pediatric cardiologist.
There were lots of sleepless nights as Hope’s team of doctors and nurses monitored her closely. Becca was beside her nearly every night.
Dr. Ashrafi and Dr. Ellini consulted with two outside experts, San Francisco-based Dr. Mohan Reddy, who specializes in complex heart disease in small newborns, as well as renowned thoracic and cardiac surgeon Dr. Glen Van Arsdell of Ronald Reagan UCLA Medical Center on the best course of action.
The team of physicians determined that a stent needed to be inserted under a pulmonary artery that was becoming too narrow, making it hard for blood to flow through it. Such a procedure is risky, especially on a baby so small.
“In Hope’s case, the idea was if we could open up the area below the valve while not injuring the valve, that would be a home run,” said Dr. Sanjay Sinha, a CHOC pediatric cardiologist who put the stent in Hope’s heart. “Two things made this difficult: she was very small, and we had no stents this size.”
A vendor was able to secure the small stent needed a day before Hope’s surgery.
Observing the recently developed procedure, known as valve-sparing RVOT (right ventricular outflow tract) stent placement, were several cardiologists, from CHOC and other pediatric hospitals.
“In some patients, there is very little room for a stent. Hope had just enough room for the stent to be placed,” Dr. Sinha explained, “We knew we had the technical skills and ability to do this, but this had never been done before at CHOC on a baby this size.”
A very scary moment
After the surgery, Hope got seriously ill with a viral infection. At one point, Dr. Ashrafi said, her heart stopped but the team was able to revive her.
In cases like Hope’s, where a newborn’s state of health is fragile, members of her clinical team often must pivot in an instant, making their work schedules long and unpredictable.
Hope was at CHOC for four months before she was able to go home. After that, physicians at another hospital removed the stent, closed the hole in her heart, and corrected her left superior vena cava.
Dr. Ellini, who continues to see Hope at her check-ups, is very pleased with her progress.
“She basically has a normal circulation,” he said. “She needed a pacemaker. Overall, she’s doing great. She’s only on one medication and is gaining weight.”
In fact, she’s up to 13 pounds.
Dr. Ellini said he’s proud of the extensive collaboration that was involved in Hope’s care at CHOC.
“We try to really foster a collaborative team approach in our interventional lab, and this is a great example of that,” he said. “Having a dedicated neonatal cardiac intensive team of physicians and nurses who are really experts in what they do really was paramount in making sure she did well.”
Becca can’t praise Hope’s team at CHOC enough. “They’re totally lifesavers,” she said. “It was a roller coaster — heartbreaking and exiting. I was pretty much afraid all the time, but they treat you like you are family.”