On a sunny day in the middle of spring, Darlyn was born at St. Joseph Hospital in Orange. She was immediately transferred across the street to the level IV neonatal intensive care unit at CHOC Children’s. As the spring turned to summer, and summer gave way to fall, the NICU remained Darlyn’s home as she battled with a myriad of health challenges.
Before she was born, prenatal ultrasounds showed that Darlyn had a congenital diaphragmatic hernia (CDH), a rare birth defect where a hole in her diaphragm allowed organs from the abdomen to move into the chest. After birth, she was diagnosed with bilateral CDH. Approximately one in every 2,500 babies born are diagnosed with CDH. Of those, only one percent have a bilateral CDH. Darlyn’s parents Mirian and Edgar understood the seriousness of this diagnosis and weren’t sure if their baby would survive the pregnancy, or pass away shortly after birth. In her first week of life, Darlyn underwent her first in a series of surgeries.
“For the first two or three weeks of her life, our main goal was survivorship,” recalls Edgar.
Darlyn also has underdeveloped lungs (a condition known as pulmonary hypoplasia), which makes it a struggle to breathe on her own. She lacks a fully formed esophagus, meaning she also can’t swallow or eat on her own either. During Mirian’s pregnancy there was a build-up of amniotic fluid due to Darlyn’s duodenal atresia (a blockage of her small intestine), so the baby was especially active and moved around constantly. The only thing that calmed her down was playing music ― everything from lullabies to classic rock did the trick. Knowing their baby loved music even before she was born, her parents gave her the middle name Melody.
“From day one she has been the melody of our lives,” Mirian says.
Music has continued to play a big role in the now seventh-month-old’s life. Daily music therapy sessions conducted in tandem with occupational therapy sessions have helped her make progress on clinical goals such as developing fine motor skills. Other goals she’s already accomplished include standing for longer periods of time, reaching for and grasping toys tightly, and visual tracking.
“Before starting music therapy, Darlyn wasn’t very active and she often lost oxygen very quickly,” Brie says. “This baby is a new baby since experiencing music therapy.”
Environmental music helps create a soothing space to teach patients to calm themselves in an over-stimulated environment, which can help them heal, even after they go home.
“From the outside, it may look simple, as if I am just serenading a baby in a soothing tone, but I’m working hand in hand with their developmental team to help them reach clinical milestones.”
Darlyn’s care team is vast. Her medical team at CHOC sees music therapy as a trusted partner in helping Darlyn achieve her clinical goals. Her support system includes: Dr. Irfan Ahmad, a neonatologist; Dr. Peter Yu, a pediatric general and thoracic surgeon; and pediatric specialists from gastroenterology pulmonology, cardiology, infectious disease, the NICU developmental team (made up of occupational, physical and speech therapists), and a dedicated team of NICU nurses.
“We love and appreciate our NICU nurses more than we can even put into words,” Mirian says. “Without them, this journey would be more difficult and more heartbreaking. They take care of Darlyn as if she was their own baby girl.”
“Music helps calm down infants,” says Dr. Ahmad. “During their fetal life, they are exposed to rhythmic sounds, such as their mother’s heartbeat. They get accustomed to these sounds, and after birth when they hear music with a similar rhythm, they like it. Older neonates become more interactive with rhythmic music, and they look forward to their sessions.”
Darlyn isn’t the only one who has been looking forward to her daily music therapy sessions― her mom does too. After each session, her developmental team calls Mirian to give a full report on her occupational therapy progress and disposition.
Her parent’s high level of engagement is deeply appreciated by her care team.
“Darlyn’s parents are amazing. They ask good questions, and they trust us to take good care of their little girl. It would be hard to tackle this level of complexity without their trust,” says Dr. Yu. “We still have a long road ahead of us, and maybe more challenges too, but they are resilient, just like their daughter.”
A few months into her time in CHOC’s NICU, Darlyn moved into the brand new 36-room unit with all private rooms. Her family has loved having their own private space.
“In the old unit, it could get noisy and we didn’t feel like we had any privacy. Now, we get to decorate her room and make it feel more like a nursery,” says Mirian.
The family has displayed notes of encouragement from loved ones and her favorite nurses- including nurse Jamie, who taught Darlyn how to stick out her tongue. They’ve even hung up the outfit she’ll wear when she finally gets to go home.
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Six-year-old Jordan was enjoying a fun break with his family in Big Bear, Calif. when he started complaining of stomach pains one afternoon. He had no chronic conditions or other symptoms, so his family didn’t immediately think it was anything serious. They assumed it might be a stomach virus, and never imagined that he would need to undergo surgery at CHOC Children’s a mere 24 hours later.
Late that night Jordan was in tremendous pain, so his parents took him to an emergency room near their resort. Two local physicians ruled out anything serious. They told Jordan’s parents it was likely just constipation or gas, and sent Jordan home.
“We were wary of the diagnosis received and being vigilant, we cut our family vacation short and rushed home so we could be closer to CHOC if his condition worsened,” says Jordan’s mom, Emma.
His pain became unbearable overnight.
“We knew his pain was abnormal and didn’t want to take any more chances at any local hospital. I wanted to know my son was in a place that specializes in kids.”
An accurate and timely diagnosis at CHOC
Testing in the ED immediately revealed that Jordan had a unique case of appendicitis with ileo-colic intussusception (a condition where part of the intestine folds into itself, like a collapsing telescope), and would undergo surgery that same day.
“Appendicitis is the most common reason for abdominal surgery in children. Pediatric surgeons at CHOC saw over 700 cases of appendicitis last year,” says Dr. Peter Yu, a pediatric general and thoracic surgeon at CHOC. “Many of these patients first come through the emergency department, meaning our ED staff is well-versed in both classic and non-traditional symptoms of appendicitis, and very unlikely to miss a diagnosis. Also, when we discover unusual variations associated with common childhood illnesses, such as ileocolic intussusception with acute appendicitis, the pediatric surgeons here are prepared to deal with it.”
Surgery at a Place Designed Just for Kids
Receiving a correct diagnosis faster meant that Jordan was on his way to surgery before his symptoms worsened.
“Jordan’s parents made a good decision in bringing him straight to CHOC,” says Dr. Yu. “If they had gone to an ‘adult’ hospital first, they would likely have been transferred to CHOC for surgery anyway. This can be costly, delays care, and can be a huge inconvenience for families.”
Learning that your child needs surgery can be scary for parents to hear. But thanks to Jordan’s parents’ decision to bring him to a hospital that only treats kids, Jordan was under the care of pediatric-trained specialists using equipment that’s made just for kids.
CHOC has pediatric surgeons on call 24/7, meaning there is always a pediatric-trained specialist ready to treat your child, no matter what time of day or night your child needs surgery.
“These events are extremely stressful as a parent because while we are still digesting the diagnosis, we need to ensure we make sound decisions in a short amount of time,” says Emma. “Dr. Yu was patient and very thorough, and I knew there was no one else I would rather have care for my son. He was in excellent hands. We were probably his last surgery of the day but he made us feel like we were his first.
After making the decision to return to CHOC for Jordan’s correct diagnosis and surgery, their son was not only in the hands of a pediatric surgeon, but a pediatric anesthesiologist as well.
“Although, an appendectomy is one of the less invasive surgeries a child can undergo, as a parent you’re still very much concerned of the potential issues that could arise from going under anesthesia,” Emma recalls. “Knowing he was under the care of an anesthesiologist who specializes in children was a great comfort to my husband and me. After we met with his surgery team, we knew he was in the best hands possible.”
Healing faster in an environment just for kids
Jordan sailed through surgery with flying colors. His appendectomy was done via a single incision hidden in his belly button, meaning he will have minimal to no scarring after surgery. His intussusception self-resolved and needed no additional surgical intervention.
After surgery, Jordan only needed to stay at CHOC for one night for observation, but he had so much fun that he would have stayed even longer if he could have, Emma recalls.
“Jordan loved being at the hospital because he felt like he was the boss! Everyone was so attentive to him. Every person that we interacted with, from the nurses that cared for him and spoke in a way he would understand, to the volunteer in the play room that let Jordan teach him how to play chess, helped make CHOC a kid-friendly place. I know any fear of doctors, hospitals and surgery that Jordan had were all lessened because of this environment.”
Jordan spent a few days resting at home and was back at school the following week.
“Dr. Yu helped get us through this high-stress situation with our son with the amount of professionalism and care you would ever want in a scary time. He is hands down one of the best. We’ll be forever grateful to Dr. Yu!” says Emma. “Now that I know how wonderful the emergency department and entire staff is at CHOC, I won’t take my kids anywhere else.”
Lizette Lough, experiencing a seemingly normal pregnancy, was making final preparations to welcome her first baby, when her water unexpectedly broke at 33 weeks. She was rushed to San Antonio Regional Hospital in Upland, close to home, where her son Landon was born early on May 3, 2016.
After a few days in the hospital, Lizette and her husband Sean noticed the baby had not made a bowel movement. Tests revealed that Landon had an obstruction in his intestine. His physician recommended Landon be transferred immediately to CHOC for an emergency surgery with Dr. Peter Yu, a pediatric general and thoracic surgeon.
“My husband and I lost it,” Lizette says. “Our baby was only three days old and weighed about 4 pounds. The thought of surgery was beyond frightening.”
Upon arrival at CHOC, the Loughs were immediately made to feel at home by the staff, who helped them find a nearby hotel. Dr. Yu explained every scenario of the complex surgery in a compassionate and confident manner, the Loughs recall.
“Landon was in stable condition when he arrived at CHOC, and I’m very pleased that our expert transport team was able to get him here quickly and safely. If there had been a delay in transfer, Landon could have become very sick and it’s very possible that more of his intestine could have died. If that would’ve happened, he may not have had enough bowel to adequately digest food, which can be incompatible with life,” Dr. Yu says.
Landon was diagnosed with jejunal atresia, a rare condition – approximately 1 in 5,000 births – in which the small intestine is incompletely developed, leading to one or more gaps, or blockages, in the intestinal tract.
Lizette had gone through the required genetic tests prior to Landon’s birth, and jejunal atresia – often diagnosed prenatally – was not detected.
Additionally, Landon had malrotation of his intestines, which failed to coil in the proper position in the abdomen. This led to twisting of his bowel. If surgery had been delayed for longer, Landon could have died.
Landon’s surgery involved making an incision on his abdomen, examining the entire length of his intestine and untwisting it, removing the dead bowel, stitching together his small intestine, and performing a Ladd’s procedure. A Ladd’s procedure places the intestines back into the abdomen in a safe configuration to prevent future twisting of the bowel.
Sean, who works as a law enforcement officer, recalls how traumatic this was for his family. “I’m used to working in stressful situations, but this was a different kind of stress,” he says. “We were so happy that our baby had a successful surgery and that he was better. However, we were still waiting for him to have his first bowel movement. We were trying to stay positive.”
After his first bowel movement indicated that his intestines were recovering well, and spending about a month in CHOC’s surgical NICU, Landon was finally able to go home with his family.
“It takes a team to successfully care for sick babies and complex patients,” Dr. Yu explains. “Landon would not have had the excellent outcome that he had without our wonderful neonatologists, experienced and skilled pediatric anesthesiologists, Melissa Powell, our dedicated surgical neonatal nurse practitioner, and the outstanding NICU nurses who have dedicated their lives to taking care of newborn babies such as Landon and countless others. Together, we have the only dedicated surgical NICU in the area, with a special focus on taking care of newborns with surgical problems.”
Thanks to the expert multidisciplinary care provided at CHOC, today Landon is a happy baby, meeting all his milestones. The Loughs are enjoying their brave little boy, and look forward to his first birthday next month.
“Dr. Yu and the nurses in the NICU were so empathetic and amazing. They saw us through so much throughout our stay and we will forever be thankful,” Lizette says.
5:00 a.m.: Alarm rings. I hit snooze once, for an additional 9 minutes of peace. Then it is time to get up and at ’em. In the dark, I attempt to avoid injuring myself on the various toys that are strewn about the house–one of the hazards that comes with raising young children. I start the coffee maker, brush my teeth, shave, get dressed and kiss my slumbering family good-bye. Then it is off to swim practice.
7 a.m.: Swim practice is over. Fatigued but happy, I shower and joke with the teammates on my masters swim team. I am grateful for my health and momentarily enjoy the small personal accomplishment of having completed my workout for the day.
7:30 a.m.: After navigating moderate traffic and enjoying NPR, I arrive at CHOC. I meet with the very kind family of my first patient, a 5-year-old boy who is having inguinal hernia/hydrocele surgery today. In children, an inguinal hernia is a small, congenital opening in the groin that allows communication between the abdomen and the scrotum in boys and the labia in girls. Thus, things like fluid, fat, omentum or intestines can pass through this opening, creating a bulge and sometimes causing pain. A hydrocele is related to an inguinal hernia and is due to fluid that has passed from the abdomen, through the opening, and into the scrotum. Inguinal hernias occur in about 1-5 percent of all children. Hernia and hydrocele surgery are routine operations for all pediatric general and thoracic surgeons and, as expected, the operation goes smoothly.
9:00 a.m.: For my second operation of the day, Dr. Mustafa Kabeer, a fellow pediatric general and thoracic surgeon, and I perform a minimally invasive Nuss procedure on a teen athlete. This patient, who hopes to earn a college scholarship, has pectus excavatum or sunken chest, the most common congenital chest wall abnormality in children. For many, this is far more than a cosmetic problem. Using small incisions that will ultimately be well-hidden in this patient’s armpits, we are able to insert a metal bar between his heart and his chest wall that helps to pop the sternum out into normal position. This bar will stay in place for three years, before it is removed in an outpatient procedure. Our operation today took only 2 small incisions and 45 minutes of operating time. We prefer the minimally invasive Nuss procedure to the older, more invasive Ravitch procedure since it achieves a wonderful outcome with less pain, minimal blood loss and only tiny, hidden scars.
10:00 a.m.: As the anesthesiologist and the operating room staff prepare for my final case of the day, I walk over to the surgical neonatal intensive care unit and medical/surgical unit to make rounds and touch base with my team of excellent, experienced surgical nurse practitioners (NPs). Not a day goes by that I am not thankful for their contributions to the outstanding care of our surgical patients at CHOC. Currently, on the surgical floor, I have patients who have recently had appendectomies, a cholecystectomy (removal of the gallbladder), lysis of adhesions (cutting of intra-abdominal scar tissue) to treat a small bowel obstruction, port placement for chemotherapy, and a Nissen fundoplication for gastroesophageal reflux disease. In the NICU I have one baby with congenital diaphragmatic hernia whom I recently placed on ECMO (extracorporeal membrane oxygenation), state-of-the-art technology that supports the heart and lungs by taking over the heart’s pumping function and the lung’s oxygen exchange. A second patient of mine in the NICU is a baby who recently had esophageal atresia/tracheoesophageal fistula surgery to repair a congenital defect where the trachea, or windpipe, abnormally communicates with the esophagus, or food tube. Fortunately, all patients are doing well, I am able to address the questions of each of my patients and their parents, and the NPs and I come to a consensus on the plan of care for the day for each one.
10:30 a.m.: Once rounds are done, I head back to the operating room for my final case of the day, a thoracoscopic lung lobectomy. This is one of my most favorite operations and is my area of expertise. This 3-month-old patient was diagnosed prenatally when an ultrasound showed a congenital lung lesion, also known as a CPAM (congenital pulmonary airway malformation, formerly known as CCAM). This diagnosis is becoming more and more prevalent, occurring in about 1 in every 5,000 babies. Fortunately, more than 90 percent will be symptom-free during pregnancy and after birth, allowing pediatric general and thoracic surgeon such as myself to hold off on surgery until the infant is a few months old and better able to tolerate the stress of an operation. Even though infants with CPAMs may be asymptomatic, it is still recommended that these lesions be removed because they can often become infected and, in rare instances, may become a cancer later in life. The benefit of operating sometime during the first several months of life is that the CPAM has yet to become infected, making surgery easier and allowing for a minimally invasive removal. Thanks to the patient’s young age, the remaining portion of her healthy lung will grow in size and compensate for the removed lobe.
Thoracoscopic lung lobectomy is extremely technically challenging because the surgeon navigates major blood vessels such as the pulmonary artery and pulmonary vein, and operating time can vary from two to six hours depending on a patient’s particular anatomy. Fortunately, this little baby’s anatomy is favorable and I am able to complete the minimally invasive operation in about 2 hours with minimal blood loss and an excellent outcome. After surgery, I have the privilege of giving her parents good news, which is always the best part of my work day. I anticipate that she will have a two-day hospital stay with minimal pain and no complications, and her tiny scars will ultimately be unnoticeable by others (except for mom! Pediatric surgeons know that moms see everything J).
1:00 p.m.: I have a quick lunch with my NPs and Dr. David Gibbs, another pediatric general and thoracic surgeon at CHOC who is also the medical director of trauma. He has established the excellent trauma program we have here, the only trauma center in Orange County that is exclusively dedicated to children. We take a moment to enjoy each other’s company, get trusted input on current clinical situations, and catch our breaths from this very typical, fast-paced workday.
2:00 p.m.: I participate in a fetal counseling session. Given my special training in fetal surgery, I work closely with community perinatologists (also known as high-risk obstetricians or MFMs–maternal fetal medicine physicians) to counsel expectant mothers and fathers on what to expect when their baby has been diagnosed in utero with a condition that will require surgery.
Today, I meet with parents whose daughter has been prenatally diagnosed with congenital diaphragmatic hernia, or CDH. Simply put, CDH is a hole in the diaphragm, which is the muscle that divides the abdomen from the chest. The diaphragm helps us breathe, and a hole here allows things that are normally in the abdomen, such as the liver or intestines, to pass into the chest. Besides potentially compromising the intestine itself, this can also lead to small lungs (pulmonary hypoplasia) which may not be able to adequately oxygenate the body. Another severe consequence of CDH is pulmonary hypertension, which is abnormally high pressure in the blood vessels of the lungs. This is a problem because a newborn’s heart must work extra hard to pump blood into this abnormal high-pressure system, which can lead to heart failure and death if not appropriately treated.
I go over the diagnosis with mom and dad, and explain to them that, after birth, their baby will require a breathing tube and ventilator to support her small lungs. Special inhaled and intravenous medications will be used to decrease the high blood pressure in the blood vessels in the lungs and to help support her beating heart. If these measures are not enough, we will need to use ECMO. If ECMO is needed, I will perform a surgery to make an incision on her neck to access her carotid artery and jugular vein so that ECMO catheters can be placed.
Ultimately, once their daughter’s heart and lung condition has stabilized—which may take days to weeks after birth—I will repair the congenital diaphragmatic hernia. To do this, I will make an incision on the abdomen, move the intestines and liver from the chest back into the abdomen, and stitch the hole closed.
I am careful to be upfront and honest about the situation: CDH is a serious and frequently life-threatening condition and the national average for survival is approximately 65 percent. Their daughter will likely require a two to three month stay in our NICU and may need to go home with supplemental oxygen and special medications for a period of time. However, I’m able to reassure them as well. Nearly 90 percent of newborns that have this surgery at CHOC survive. At CHOC, we are fully equipped and have the expertise to handle any possible outcome, thanks in part to our surgical NICU, the only one of its kind of the west coast.
Mom and dad are tearful at the gravity of their daughter’s situation but they also express how grateful they are for the opportunity to learn more about CDH, have their questions answered, and leave feeling better prepared for the next steps. They know they can contact us at any time, day or night, and we will be there to address any problem and provide support. They also feel relieved that they will be surrounded by familiar, trusted faces when their daughter is born.
3:00 p.m.: I head back to my office with some precious time to complete some homework—yes, I said homework—and work on research projects. Believe it or not, I have gone back to school to get my Master of Public Health degree from Johns Hopkins University. This is feasible because I am able to complete the majority of my coursework online. I wanted to get this additional degree to gain knowledge and experience in outcomes research, a relatively new branch of public health research that seeks to understand the end results of particular health care practices and interventions. While pursuing this degree, I am simultaneously working on outcomes research projects with my research partner, Dr. Yigit Guner, another pediatric general and thoracic surgeon at CHOC. Together we are utilizing large national databases to create risk calculators that can help better predict CDH outcomes, as well as predictoutcomes in other neonatal diseases such as VACTERL (vertebral defects, anal atresia, cardiac defects, trachea-esophageal fistula, renal anomalies, and limb abnormalities).
6:00 p.m.: I head home for the day. En route, I call my mother who lives out-of-state to check in. My father recently passed away after a long struggle with illness and I just want to make sure she’s doing alright. She assures me that she is, and stubbornly resists my suggestions to have her move to Orange County. She is happy and comfortable in her home, which makes me happy as well, but I am concerned that I will be unable to adequately help her in the years to come should her health someday fail.
6:30 p.m.: I’m happy to be home with my family. It’s dinner time and I’m famished. I relish the chance to catch up on the day’s events with my wife and kids. I play with the kids for a bit and then it is time to help my oldest with homework. After that, my wife and I get all the kids ready for bed and tuck them in.
9:00 p.m.: My wife and I finally have a precious moment to ourselves. We watch a favorite TV show together and I barely make it to the end before falling asleep. It feels so good to lie in bed, with the cool night breeze filtering in through my bedroom window. I dream of my family, work and old friends. Tomorrow, I have clinic and then I will spend the remainder of the day and night in the hospital, as I am on call for any pediatric general, thoracic and trauma emergencies that come to CHOC. I feel so blessed to have the family that I have, and to be able to do the meaningful work that I do.
The addition of a new CHOC Children’s pediatric surgeon with a unique expertise lays the groundwork for an expansion of CHOC’s surgical services for the smallest of patients.
While specializing in the full spectrum of pediatric surgery, Dr. Peter Yu has special expertise in the surgical treatment of babies before birth, and is working with hospital leadership to develop a multi-disciplinary fetal surgery program at CHOC in the near future.
“I’m extremely happy to be at CHOC,” Dr. Yu says. “There is so much talent and potential here, as well as a pioneering spirit and willingness to undertake big things.”
Fetal surgery was uncharted territory about 30 years ago, Dr. Yu says. The following years, however, have seen many advances, including new techniques that allow surgeons to treat babies while in utero for conditions that are life-threatening or potentially debilitating.
With special training from the Children’s Hospital of Philadelphia, a pioneering institution in fetal surgery, Dr. Yu is determined to bring that level of expert care to CHOC and augment his team’s scope of services.
Also specializing in neonatal, thoracic and hernia surgery, Dr. Yu is board certified in general surgery, pediatric surgery and surgical critical care. Among his other goals are enhancing CHOC’s trauma program, advancing its minimally invasive surgery program, and furthering CHOC’s national reputation through quality patient care and innovative research.
As a medical student at the University of Missouri School of Medicine, Dr. Yu fell in love with the culture and technical aspects of surgery, as well as the potential to make sick patients better quickly.
“I realized that the best surgeons were kind, dedicated, hard-working and team players – traits that I really value,” he says. “When I discovered pediatric surgery, I felt it was a perfect fit for me.”
Dr. Yu completed his general surgery residency at UC San Diego, followed by a surgical critical care fellowship at Boston Children’s Hospital and a pediatric surgery fellowship at the Children’s Hospital of Philadelphia. He is currently working on a master’s degree in public health from Johns Hopkins Bloomberg School of Public Health.
In his spare time, Dr. Yu enjoys spending time with his three children and his wife, an intensive care nurse. He also enjoys surfing, basketball and competitive swimming on a local U.S. Masters swim team.
Call 714-364-4050 to schedule a consultation with a CHOC pediatric surgeon.