Each year, one in 10 babies in the U.S. are born prematurely. For the Cushing family, that statistic is two in two. Eleanor and Spencer’s eldest son, James, was born at just 24 weeks gestation. Their newest addition, Walter, was born at 31 weeks.
Today, both boys are doing well, thanks to respective stays in the CHOC Children’s small baby unit (SBU), a special unit within the neonatal intensive care unit (NICU) that focuses on caring for the unique needs of the smallest and sickest babies.
Big brother James
James Theodore was born at a local hospital weighing just 1 pound 6 ounces. He was transferred to CHOC when he was 1 day old and spent four and a half months in CHOC’s SBU.
James’ SBU stay – July to November – was filled with myriad health challenges, in addition to his goals of gaining weight and learning to breathe on his own. During his hospitalization, James fought off a bloodstream infection, was intubated multiple times to help him breathe, underwent a minor cardiac procedure and eye surgery, and worked through feeding challenges. By the time he graduated from the SBU, his weight was up to 6 pounds. He was discharged with supplemental oxygen and a pulse oximeter to monitor the oxygen levels in his blood and had multiple follow-up appointments to track his progress.
Throughout a lengthy hospitalization, CHOC staff made sure the Cushings still had the opportunity to celebrate traditional milestones with their new baby – including his first Halloween. He was dressed up as Winnie the Pooh – in a Build-A-Bear costume, since typical Halloween costumes were still too big for him. His parents and nurses donned coordinating outfits to round out the Hundred Acre Wood characters.
James is now 3 years old. He’s smaller than other kids his age and has a slight speech delay, along with a new prescription for glasses. But despite his early start in life, James is doing well.
Each year on James’ birthday, the Cushings return to CHOC’s SBU to visit the doctors and nurses who cared for him during his early days.
“Despite James’ life-threatening obstacles, the SBU team was able to care for our son and save his life,” Eleanor says.
Little brother Walter
Due to her existing medical issues, Eleanor knew she would likely deliver early with any additional pregnancies. When she and Spencer were ready to add another child to their family, they switched medical plans so that she could eventually deliver at St. Joseph Hospital in Orange, right next door to CHOC’s expert neonatologists and other pediatric specialists.
Walter Rudolph was born at 31 weeks gestation and admitted to CHOC’s SBU, just like his older brother. At birth, he weighed just 3 pounds, 7 ounces. Walter’s goals in the SBU focused on growing and gaining weight. Six weeks after birth – and two weeks before his original due date – he was discharged from the hospital. In that time, he had grown to 5 pounds, 11 ounces.
During Walter’s SBU stay, he was cared for by many of the same doctors, nurses, and developmental and respiratory therapists who cared for his older brother.
“When James was born, it was so nice to see so many familiar faces from our first SBU stay,” Eleanor says.
“Our medical team was not only super smart, but they were also warm and compassionate,” Eleanor says. “There was always a theme with staff; they were always asking, ‘Do you have any questions? Can I get you anything?’”
Eleanor and Spencer are both nurses by trade, but at CHOC they got to focus on just being parents.
“Because of our medical backgrounds, we knew what the machines and monitors were doing, but we didn’t have to worry about any of that. We got to focus on just being parents,” Eleanor says.
With two NICU stays behind her family, Eleanor’s message to CHOC staff is a simple one.
“Thank you to everyone who walked us through this journey,” she says. “We are a stronger family because of it.”
Growing up, Tim Hicks fondly remembers seeing his dad come home from work with a smile. Despite his demanding job as physician, his dad, David, always remained positive and shared countless rewarding stories that he witnessed at the hospital.
It was that unwavering dedication that inspired Tim, now a chief resident at CHOC Children’s and UC Irvine, to pursue a career in medicine.
“Seeing how happy my dad has been, I wanted to be part of that,” he says.
As long as he can remember, Tim was interested in medicine. He was a curious child and enjoyed science and learning about the human body.
Similarly, his dad, Dr. David Hicks, a pulmonologist and neonatologist at CHOC for more than 40 years, had always been interested in medicine as well. David wanted to become a veterinarian initially, like his own father, but eventually went to medical school.
During his long and successful tenure at CHOC, David has enjoyed seeing the hospital’s growth and working alongside a compassionate and dedicated team.
“What’s most inspiring at CHOC is the desire of our nurses and doctors to treat their patients as if they were their own children. That, and when I see the smiles on parents’ faces when their kids get better, is what inspires me to continue to do this,” says the 74-year-old physician.
It’s that same drive that motivates Tim to follow in his dad’s footsteps.
“I really enjoy treating and hanging out with kids. They manage to smile even in a very difficult time. Their light-heartedness and innocent outlook are refreshing in many ways,” Tim says.
Tim’s relationship with CHOC goes back even further, however. His dad recalls the time when Tim, a teen then, was admitted to CHOC to be treated for a splenic fracture.
“Little did we know then that he would be back as a pediatric resident one day,” David says. “It was a few scary days in the PICU. Moments like that teach you that life is precious and that things can change very quickly.”
Tim completed his pediatric residency in July 2019 and became a board-certified pediatrician. His goal now is to go into pediatric pulmonary medicine, like his father.
“Pulmonary was one of my last rotations in residency, and I fell in love with it,” Tim says. “I guess I’m following my father’s footsteps even more closely now!”
Reflecting on his years as a resident, he knew becoming chief resident was the natural next step in his journey.
“I wanted to be a chief resident because I love the CHOC residency program. It’s an extra year where I take on more of an administrator role, a position that allows me to help make important improvements to our already wonderful program.”
Along with meetings, scheduling, seminars and other responsibilities that come along with the role, Tim appreciates the chance to become a teacher.
“The Chief Resident position is unique; as a liaison between the residents and administrators, I try to be the residents’ voice and empower them while getting insight into the workings of a large program of 90 residents working at three hospitals. Because of this, I will become a better teacher, communicator and leader.”
Both Tim and David point to CHOC as an ideal place for budding doctors to learn. Between a diverse patient population and a wide variety of cases, residents can expect to be challenged.
“Training at CHOC gives us a wealth of knowledge,” Tim says. “It’s a great foundation for any pediatric career that residents decide to pursue, whether it is general pediatrics or subspecialty medicine. The attendings at CHOC are wonderful, approachable and eager to teach. They really help foster a CHOC family atmosphere that feels very special to be a part of.”
Seeing his father work at CHOC for more than four decades has given Tim a unique perspective about what it means to be part of the CHOC family.
“As his son and as a former CHOC patient, I have learned how special the patient-physician relationship is. To be a physician and serve in the community I grew up in is something few people are lucky enough to experience.”
For Tim, that means occasionally encountering familiar faces.
“Some of the most special moments in residency have been when I have helped take care of my father’s patients,” Tim says.
It reinforces the impact of his dad’s work when those former patients – now parents of their own children – remember Dr. David Hicks fondly.
“My dad has given me great advice and taught me to treat each patient as a person – that it’s important to take care of their unique, individual needs with care and compassion.”
Tim – or “Hicks 2.0,” as he jokingly refers to himself – couldn’t be prouder to follow his dad’s path.
“My dad is an incredible role model and friend. I’m not only thankful for his guidance in life but also in medicine,” he says.
Two oncologists have joined the team of nationally-recognized specialists of the Hyundai Cancer Institute at CHOC Children’s. Dr. Josephine HaDuong and Dr. Ashley Plant were both fellowship trained at two ...
“You look like you could use a good cup of coffee,” Maria would say from time to time to a tired parent at CHOC Children’s at Mission Hospital. “Oh yes!” they’d reply as she’d make them a cup.
Maria understands that a warm cup of coffee doesn’t just help sustain a parent who’s running low on sleep, but also gives them back a small sense of normalcy while their child is hospitalized.
Maria, a former department assistant in the administrative offices of CHOC at Mission who recently transferred to the laboratory at CHOC Children’s Hospital in Orange, knows this all too well. Her son Nehemiah, who is now a happy and healthy 11-year-old boy, was born with a heart condition and spent the first four months of his life at CHOC.
“If I see a mom struggling, I would try to do my best to be there for them because I understood what they were going through” she says. “They’re comforted knowing that someone understands.”
Delivering next door to CHOC
Thanks to a prenatal ultrasound, Maria and her husband Juan knew there was a problem with their son’s heart. But doctors told them they wouldn’t know the extent of the problem until he was born. Maria chose to deliver her son at St. Joseph Hospital in Orange so that they’d be next door to CHOC, and he would have close access to any specialized care he might need.
Shortly after Nehemiah was born, doctors performed an echocardiogram, a common and safe procedure that helps doctors look at how the heart is working. Dr. Anthony Chang, a pediatric cardiologist who is today CHOC’s chief intelligence and innovation officer, was present at Nehemiah’s birth.
“I was so scared for my son, but I felt like he was in good hands,” recalls Maria. “Dr. Chang explained Nehemiah’s condition and that he needed to be transported to CHOC for emergency surgery. He said it was a race against time.”
Nehemiah was born with interrupted aortic arch and ventricular septal defect, a condition with a large hole in the heart and blockage of the main artery feeding the body. Normally a hole in the heart would be considered bad news, but that hole helped him live because it allowed blood to circulate until corrective surgery could be done.
When Nehemiah was two days old, he underwent his first in what would become a series of heart surgeries, performed by Dr. Richard Gates, CHOC’s medical director of cardiothoracic surgery and co-medical director of CHOC’s Heart Institute.
Nehemiah spent his first Christmas in the hospital, and his parents weren’t sure when they would be able to bring their baby home.
The day after Christmas, Nehemiah’s condition worsened when he contracted a blood infection called septicemia. Babies under 3 months can contract this because their immune systems haven’t developed enough to fight off overwhelming infections that originate elsewhere in their body. Once he was stabilized, his care team opened his chest so they could administer a vacuum-assisted closure (VAC) to help soak up the infection. A suction pump device connected to a tube with a foam sponge on the end, which was placed into Nehemiah’s chest to soak up the infection. His dressings were changed regularly for several weeks until the infection was gone. Once he recovered, his care team closed his wound and he was transferred back to the CVICU.
It takes a village
It would be another few months before Nehemiah would be able to go home. During that time, CHOC became home for his family. Juan would shuffle back and forth between hospital and the family’s home, bringing Nehemiah’s siblings Ethan and Giovanni, who were 3 years old and 10 years old at the time, to visit their baby brother. Maria’s mom would help the family and visit as well. During Nehemiah’s months-long hospitalization, Maria stayed by his side and never went home.
“It took a village to get my little guy through this ordeal,” Maria said.
A four-month hospital stay
Before Nehemiah was discharged after more than four months in the hospital, his parents received education and training from his doctors and nurses, so they would be able to care for him at home. He was discharged with a feeding tube, oxygen tank and medication.
“We were so excited to finally bring him home. In a sense, it was like we all got to finally go home,” Maria recalls. “My other two kids had essentially been living with their grandma, I had been at the hospital, and my husband had been going back and forth. We were finally together under one roof.”
Nehemiah’s heart was fragile, so as he grew up he would sometimes get sick more easily, and more severely, than his brothers and friends.
“If he would get sick with just a little cold, he would go from zero to 10,” Maria says.
Sometimes that would include seizures, which lead to two hospitalizations.
A second heart surgery
Nehemiah has undergone one additional surgery to repair a blockage that developed between his heart and great aortic artery, called a subaortic membrane.
“After his last heart surgery, his seizures stopped, and he started becoming normal,” Maria said.
These days, Nehemiah, who loves sports and music, visits CHOC every six months for check-ups with Dr. Chang to see how his heart and arteries are progressing as he gets older.
“His team always wants to know as he is growing, are the arteries growing with him? Eventually, he’ll need another procedure someday,” Maria said.
Despite semi-frequent trips to CHOC, Nehemiah is not afraid of doctors because for him, doctor appointments are second nature, according to Maria. Nehemiah has spent so much of his life in and out of CHOC that he refers to it as “My CHOC.”
A few years ago, when Maria was looking for a new job, her personal connection to CHOC was a big factor in her search, she says.
“I felt like CHOC was somewhere I’d want to work because I had so many positive experiences here as a mom. Everybody was very friendly. The nurses were good with all my kids, and with me too,” she said. “I remember that little things went a long way, and I try to bring that to my work here now.”
By Elle Kennedy, mom of CHOC Children’s patient Teddy
When I got pregnant with my son Teddy, my husband and I planned to follow the route we took during my pregnancy with our daughter Charlotte—a midwife and practice we were already familiar with. In the years since our daughter had been born, that office had implemented a new rule—all babies must undergo a fetal echocardiogram, an ultrasound test during pregnancy to evaluate the heart of an unborn baby.
My pregnancy had been normal, so when I went in for this fetal echo around 23 weeks, I didn’t even have my husband Jeremy come with me. We were grateful for the precautionary test, but we didn’t expect for them to find anything abnormal.
What they found was anything but normal.
Teddy was diagnosed with anomalous pulmonary artery off the aorta. Typically, the blood is supposed to go through the heart and then into the lungs and then back through the other chamber of the heart. Teddy’s diagnosis meant that one of his lungs was attached in the wrong order. This lung was getting blood that was already oxygenated by the other lung, which can make the misaligned lung really sick. The lungs are not supposed to receive oxygenated blood; they’re supposed to oxygenate the blood.
Sometimes this condition isn’t caught in utero, and the baby seems healthy at birth, but a few months down the road they have breathing issues and the detective work to find a diagnosis begins. We were fortunate that this was diagnosed before Teddy was born, so we could be prepared.
Making a new plan
I quickly understood that the rest of my pregnancy would look different than my first, and that my birth plans would change. One of my first thoughts was, “I need to find a doctor who can deliver at St. Joseph Hospital in Orange, so that we can be right across the street from CHOC.”
We found an OB/GYN and were also referred to Dr. Nita Doshi, a pediatric cardiologist at CHOC who specializes in fetal cardiology.
In the weeks leading up to Teddy’s birth, we had a big meeting with Dr. Doshi; Dr. Richard Gates, Teddy’s cardiothoracic surgeon; many other CHOC doctors; my OB-GYN and the St. Joseph labor and delivery team. There were 15 people in the room with us, ready to share the game plan for Teddy’s birth and immediate care after he was born. Everybody went around the room, in order of what would happen to me and Teddy. It was like “OK, when you come in, here is going to be the birth team. Once he’s born, here is the team taking over. When he goes into surgery, here’s that team.” Everybody got to walk us through what they were going to do and what the stages of care would look like. That experience was amazing for us. It was really nice to be able to meet everyone ahead of time.
This was an entirely new experience for us. We had a lot of fear going into it. As a parent, you hear open heart surgery and it sounds so scary. Getting to talk to people on the team and learn about their area of expertise, and have them tell you what to expect, was a very relieving experience for us. They thought through every step of the journey.
After a lengthy but healthy delivery, Teddy was born weighing seven pounds, 14 ounces. After a quick check-up to ensure his heart was doing OK and he was breathing properly, we were able to spend 30 minutes with him before he needed to be taken to CHOC.
During this two-and-a-half-hour surgery, Dr. Gates removed the right pulmonary artery from the aorta and transferred it to its proper position on the main pulmonary artery.
Caring for the whole family
After surgery, Teddy spent two weeks in the cardiovascular intensive care unit (CVICU). We would visit him every day, and then go home in the evenings to put our daughter to bed. We knew our son was in good hands, and we wanted to make this time as normal as possible for his big sister.
Although the hospital staff was there to care for Teddy, they helped us prepare our daughter for her first hospital visit, as well. When Teddy was first brought to the CVICU, he was hooked up to all kinds of machines and wires. That can be scary for siblings to see. They encouraged us to wait until he was closer to going home, so that it would be a more positive experience for Charlotte. We also knew that Teddy would return to this hospital many times for other procedures and check-ups, and we didn’t want Charlotte to think of a hospital as a scary place. When she did come in, it was amazing. She loved getting to see her baby brother, and all she wanted to do was hold him. The staff was so attentive to her. Even though this wasn’t the way we intended to welcome our son into the world, it turned out to be an amazing experience.
To thank the hospital staff, and to help Charlotte feel more involved in her brother’s care, we brought small felt hearts on safety pins for her to give out to his nurses and doctors. She walked around the unit handing them out and said, “Thank you for taking care of Teddy.” It’s a tradition we’ve continued at appointments to this day.
When Teddy was around 3 weeks old, we finally got to bring him home. His sister was so happy! He had a bandage on his chest so he couldn’t do tummy time right away, but other than that it was a normal routine.
Teddy’s first angioplasty
Three months later, we came back to CHOC for an angioplasty. Scar tissue was building where they had stitched the artery in place, so the artery wasn’t growing properly. During this procedure, they made a small incision in an artery in Teddy’s thigh, inserted a small balloon and snaked it up to his heart, and slowly expanded the balloon in order to safely break up the scar tissue and gently stretch the artery. This time, we only had to spend one night in the hospital for observation.
Teddy had a follow-up angioplasty when he was three years old. He will need another angioplasty in another three to five years, depending on how his artery grows in relation to the rest of his body. Someday, he will have a stent (a tiny mesh tube) put in to permanently keep his artery open.
Throughout this process, CHOC has been amazing for us because they’re willing to take our say into consideration. Our team always asks us, “Are you comfortable with this plan?” We have been involved in the decision-making progress every step of the way.
Teddy is smaller than the average 3-year-old boy. Personally, I think it’s a blessing that he’s growing a little slower than other kids his age. It’s giving his heart time to grow at a slower pace because the rest of his body isn’t growing as fast. Other than his smaller than average stature, he’s a healthy kid. He underwent occupational and physical therapy for a while to help him meet milestones, but he graduated from those therapies at 18 months and now he is hitting or exceeding all of his milestones.
These days, we see Dr. Doshi every six months for a check-up. Despite many appointments and procedures over the last few years, Teddy has no fear of the doctor. When he sees a Choco Bear logo on a billboard, he points and says, “Mom that’s where I went and had my operation. They took care of me there.”
If you look at him, you wouldn’t know he had a heart condition. Unless you see him shirtless and notice his scar, you would think he was just a typical kid. He talks well for his age, and he loves anything with wheels. He’s a very brave young boy, which we knew from day one.
A message to other moms
To any other moms with hospitalized babies, know that you are not alone. For me, the hardest part of this journey was not knowing anyone else whose baby was hospitalized after birth. Know that there are other parents out there who understand what you’re going through.
This journey could have been a scary experience for our family, but I never imagined it could actually be a positive experience. I thought we would just have to get through this, but Teddy has so much fun laughing and playing with the nurses who take care of him before and after procedures.
CHOC has done a really great job of thinking through everything from a patient perspective and a parent perspective. They try to create the best possible experience from start to finish for everyone involved. They make it a reassuring process for parents, a happy experience for siblings, and a safe experience for patients.
At CHOC, everyone’s goal is to make a child’s experience a positive one.
“The national recognition for CHOC’s cancer program is well-deserved. There’s nowhere else I’d rather have gone through treatment than CHOC,” says 17-year-old Sydney Sigafus, CHOC patient and cancer survivor. “Everyone who works at CHOC cares about you as a person, not just a patient. I was included in every decision and conversation about my care.”
The Best Children’s Hospitals rankings were introduced by U.S. News in 2007 to help families of children with rare or life-threatening diseases find the best medical care available. Only the nation’s top 50 pediatric facilities are distinguished in 10 pediatric specialties, based on survival rates, nurse staffing, procedure and patient volumes, reputation and additional outcomes data. The availability of clinical resources, infection rates and compliance with best practices are also factored into the rankings.
“We understand how scary it can be for parents whose children are dealing with life-threatening illnesses or injuries. That’s why we are committed to the highest standards of care, safety and service,” says Dr. James Cappon, CHOC’s chief quality officer. “While we are proud of our accolades, including being named a best children’s hospital, we remain focused on preserving the magic of childhood for all kids, whether they are seriously ill or healthy, or somewhere in between.”
The American Association of Critical-Care Nurses (AACN) recently conferred a gold-level Beacon Award for Excellence in the pediatric intensive care unit (PICU) at CHOC Children’s Hospital. This is the third ...