Smallest baby at Stanford Medicine Children’s Health to have heart stent placed for tetralogy of Fallot
The odds were stacked against Emmett Watanabe, a little fighter who started life with a congenital heart defect and weighing less than 1.5 pounds. But today, he’s a sure bet for becoming an active, happy toddler.
“At 19 weeks along in my pregnancy, my husband, Derek, and I learned that Emmett had a congenital heart defect called tetralogy of Fallot,” says Emmett’s mom, Yatine.
Tetralogy of Fallot (TOF) is a group of four congenital heart defects. Most babies with TOF need at least one open-heart surgery in their first year of life.
The collaborative relationships that Stanford Medicine Children’s Health has with community cardiologists in the Bay Area and beyond have proved essential in getting infants like Emmett the comprehensive care that they need. Derek Obayashi, MD, Emmett’s local pediatric cardiologist, diagnosed him with TOF and referred the family to Stanford Medicine Children’s Health’s Fetal Cardiology and Fetal and Pregnancy Health programs. These teams have coordinated closely on Emmett’s fetal counseling and have worked side by side with an interdisciplinary team of pediatric cardiologists, heart surgeons, maternal-fetal medicine specialists, neonatologists, and dozens of other specialists, to care for Yatine’s health and Emmett’s health before, during, and after birth.
“The prenatal counseling that we received helped us understand and accept his diagnosis. Knowing we were at Stanford Medicine Children’s Health, where they care for babies with the most complex cardiac issues, put us at ease,” Yatine says. “We felt we could handle his heart defect. But then everything turned upside down.”
Around 25 weeks’ gestation, Yatine’s maternal-fetal medicine doctor discovered that Emmett had intrauterine growth restriction, meaning he wasn’t growing as expected. Doctors needed to keep him in the womb for as long as possible.
“They tested the flow in my umbilical cord, and it showed that my placenta was basically shutting down. Had he been born right then, his chance of survival would have been zero,” Yatine says.
Team effort keeps Emmett alive
“Because our neonatal and maternal-fetal care are under a single center of excellence in the Johnson Center for Pregnancy and Newborn Services, we seamlessly collaborate to provide the highest level of care for pregnant moms and neonates,” says Susan Hintz, MD, director of the Fetal and Pregnancy Health Program at Stanford Medicine Children’s Health.
At 27 weeks and 4 days, Emmett came into the world by C-section weighing 640 grams, or 1.4 pounds. For the first few days of life, this extremely low-birth-weight infant seemed to be doing well—a phase that’s sometimes referred to as the honeymoon period in the Neonatal Intensive Care Unit (NICU). Then, as his mom says, “he started tanking.” He was cyanotic, meaning his fingertips, toes, and lips were blue—a sign that his blood was not flowing well to his lungs. If that wasn’t enough of a battle for this tiny champ, his doctors also discovered that his intestines were twisted and cutting off their blood supply.
First, Emmett underwent abdominal surgery for intestinal malrotation and volvulus with Bill Chiu, MD. Next, he had a lifesaving procedure to improve blood flow to his lungs, all within his first week and a half of life. For perspective, Emmett was the size of a 24-ounce soda bottle, and his heart was the size of a grape.
Placing a stent less than a centimeter long
“The pathway between Emmett’s heart and pulmonary arteries was extremely narrow, and since he was born with no other way for blood to get to the lungs, he was dangerously blue. He nearly passed away multiple times that first week,” says Greg Adamson, MD, interventional cardiologist. “As he became more unstable from his abdominal surgery, it became clear that we needed to urgently put in a stent to open the pathway—something we had done many times before, but not for such a tiny and sick baby.”
The Cardiac Catheterization laboratory team, led by Lynn Peng, MD, collaborated to perform the procedure. Dr. Adamson placed a stent across Emmett’s narrow pulmonary valve, which opened up a pathway to get blood to his lungs. The stent was less than a centimeter long and just a few millimeters in diameter. Emmett was extremely ill, so it was very touch and go.
“Dr. Adamson and Dr. Davis called us before the procedure and explained that the stent was his only chance at survival. They were willing to try, but they advised us to hold him as much as we could and say our goodbyes,” Yatine says. “It was heartbreaking, but he surprised everyone and made it through.”
With adequate blood flow to his lungs, Emmett gained weight and strength and nearly doubled his size within two months. As he grew, so did his heart, and with it the need to place bigger stents to ensure that his lungs and body received enough blood. In total, Dr. Adamson performed three procedures. The goal was to get him mature enough to undergo open-heart surgery.
Heart surgery to repair tetralogy of Fallot defects
When Emmett was 3,700 grams (8 pounds) and 4 months old, he was ready for open-heart surgery. Michael Ma, MD, specializes in performing heart surgeries on very small babies at Stanford Medicine Children’s Health, and he felt confident that he could provide the best possible outcome for Emmett. The talented cardiothoracic surgeons at Betty Irene Moore Children’s Heart Center offer the most advanced surgical treatments for children of any age, with excellent outcomes, even for extremely complex heart cases.
“In my mind, the heroics happened very early on with the first stent—something that’s been done in maybe just a few places in the world on a baby so small. That, and the NICU team for providing such incredibly nuanced care,” Dr. Ma says.
The heart surgery that Dr. Ma performed, while routine, required a carefully tailored approach. While the stent procedures saved Emmett’s life, they also, as expected, complicated his heart surgery, requiring customized methods for safely removing the stent and rebuilding areas of Emmett’s impacted heart. Ultimately, Emmett underwent a full repair, with closure of a large hole in his heart, placement of an artificial conduit between his right ventricle and his pulmonary arteries to relieve pulmonary valve stenosis, and the removal of obstructing overgrown muscle within his right ventricle.
“One of the heart surgery care team’s standout traits is a willingness to take on really complex patients and be their place of last resort. Some heart centers are not willing to take the risk, and I am so proud that we do because it’s a child’s life that’s in the balance,” Dr. Ma says. “What’s considered high-risk for some children’s heart centers is often normal risk for us.”
Emmett’s home base: The intensive care units
Between surgeries and procedures, Emmett’s home was the NICU and the Cardiovascular Intensive Care Unit, where he lived for his first eight months of life. The teams ensured that he was strong before, during, and after his procedures and surgeries. Emmett often needed minute-by-minute care.
“Our NICU is fairly unique in that our neonatologists round with cardiologists to ensure collaborative care,” says Shazia Bhombal, MD. “This constant communication leads to quicker and more informed care decisions. We don’t just think about a baby’s heart. We always consider the whole patient—nutrition, developing brain, everything—which makes for a better outcome.”
Being a micropreemie meant that Emmett had a number of challenges besides his heart. He received a large amount of specialty and subspecialty care.
“The fact that Emmett is thriving with normal lungs, normal intestines, and a normal brain is a huge testament to the NICU specialists. For months they accounted for every drop of fluid he received, monitored his every breath and heartbeat, and kept him safe in conditions similar to the womb. Had we focused only on Emmett’s heart, he could have ended up with major problems to his other organs,” Dr. Adamson says. “Also, frequent check-ins and collaboration with Emmett’s outpatient cardiologist, allowed for a seamless transition when Emmett was discharged, increasing his ability to thrive at home.”
Because Emmett was born so early, his lungs were not fully developed. He had bronchopulmonary dysplasia (BPD), a type of chronic lung disease. As part of the specialized Cardiac and Respiratory Care for Infants with BPD (CRIB) Program, cardiologists, pulmonologists, and neonatologists worked together to improve his breathing. Emmett also developed an irregular heartbeat and was seen by specialists in Pediatric Electrophysiology and Arrhythmia.
“Everyone was so invested in Emmett. They treated him like he was their own child. Nurses would change shifts to be with him or come see him on their breaks. All kinds of doctors would round and then park themselves in front of his isolette for hours trying to figure out how to best care for him,” Yatine says. “Knowing that the odds were against Emmett’s survival, it couldn’t have been easy for the doctors to perform risky procedures and surgeries to save him. We are so grateful for their bravery and willingness to give Emmett a fighting chance.”
Despite his rough start, Emmett has caught up on all of his developmental milestones. Occupational therapists, physical therapists, and developmental experts made sure he received the stimulation he needed to stay on track developmentally.
Emmett just celebrated his first birthday. Through the years, he will require more heart surgeries, but he has already faced the hardest ones. The family revels in his nice pink color and his consistently high blood oxygenation levels.
“I get chills thinking about what could’ve been, had we not been at Stanford Medicine Children’s Health, where so many incredible doctors and nurses worked together to help him. All it would’ve taken was for just one thing to go wrong, but so many things went right,” Yatine says.
Emmett sits up for long periods of time, and he has almost mastered rolling over. He’s very social. He loves to be held, and he relishes carrying on animated conversations of babble. One of his favorite activities is watching his 4-year-old brother, Wyatt, play.
“With all of Emmett’s twists and turns, Yatine and Derek had such grace, even when we were not sure he would make it,” Dr. Bhombal says. “Their constant care at his bedside is a big reason why Emmett is doing so well today.”
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