One family, two NICU stays

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-birth-small-baby-unit
James, shortly after his birth.

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.

James visit_Dr. Bhakta
Each year on his birthday, James visits the CHOC staff who cared for him as an infant. He’s pictured here with his dad Spencer (left) and Dr. Kushal Bhakta, medical director of CHOC’s SBU.

“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.

walter_small baby unit
Eleanor holds her newborn son Walter, alongside smiling big brother James.

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.

These familiar faces included Dr. Kushal Bhakta, medical director of CHOC’s SBU, and Dr. Michel Mikhael, a CHOC neonatologist.

“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.

walter-nicu-graduation
Walter, on his graduation day from CHOC’s NICU. His graduation cap was knit by CHOC volunteers, and his graduation certificate showcases his impressive growth in the NICU.

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.”

Learn more about CHOC's small baby unit

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From CHOC mom to CHOC employee

“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.

After Nehemiah recovered from surgery in the cardiovascular intensive care unit (CVICU), he was transferred to CHOC’s neonatal intensive care unit (NICU). He had a feeding tube to help him eat, but as a step towards going home, he needed to work on eating on his own.

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.”

Learn more about the Heart Institute at CHOC Children's

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Giving back through volunteering at CHOC: Rosemary’s story

By Rosemary Islava, current CHOC volunteer and mother of former CHOC Children’s patient Aliyah

When my daughter Aliyah was fighting cancer, my family spent a lot of time at CHOC Children’s Hospital.

Aliyah was diagnosed with a brain tumor at age 2. Before we were transferred to CHOC from a hospital closer to our house, I vaguely knew there was a children’s hospital in Orange, but I had no clue about the miracles and magic that happens within the walls of CHOC.

Throughout Aliyah’s journey, she underwent multiple brain surgeries and rounds of chemotherapy. Our family spent as much time by her side as possible. Aliyah’s siblings practically grew up at CHOC. At one point, Aliyah stayed in the hospital for seven months straight.

Rosemary and Aliyah
Rosemary and Aliyah

Aliyah beat cancer once, and then had to regain her ability to walk, talk, eat, sit, hold her head up—everything. As you can imagine, throughout this journey our family got to know practically everyone at CHOC—doctors, nurses, physical therapists, security guards, cafeteria staff, the sweet staff who cleaned Aliyah’s room, and more. They became like family to us.

Aliyah was always a very determined and caring little girl. Although she was soft-spoken, she was a firecracker. She taught me what true strength was, even though I think it should’ve been the other way around.

After a few years of remission, Aliyah’s cancer returned when she was 9, and she passed away shortly after her 10th birthday. The special way her doctors and nurses cared for her throughout her life didn’t end when she passed away—several of them even spoke at her memorial service.

Caring for others the way CHOC cared for my family

A year after Aliyah passed away, I joined CHOC’s mighty brigade of volunteers. Everyone at CHOC had done whatever they could – for years – to make Aliyah feel like the princess she was. They also made our experience as a family easy and comfortable, and I wanted to pay it forward.

You might assume that volunteering at a hospital is sad. If that were the case, I wouldn’t be here. For me, the opposite is true. Yes, sometimes people get bad news here. But more common that, volunteers and staff get a front-row seat to the resilience CHOC patients display every day.

I was open to serving anywhere the hospital needed me, but I was placed on the oncology unit. During my weekly volunteer shift, I get to serve in all sorts of ways, from helping nurses re-stock supply carts with much-needed supplies, playing board games with patients who need a buddy, or making a cup of coffee for a tired parent. I love assisting families through the discharge process—loading up a red wagon with their belongings and helping them get to their car. I celebrate with them when they can take their child home.

My family was treated so well during our time at CHOC, and it’s a privilege to pay it forward to other families. Whenever I leave CHOC, my heart feels full.

Each week, I proudly put on the traditional blue smock worn by hospital volunteers, along with my CHOC volunteer ID badge. My badge holder includes a photo of Aliyah. Sometimes patients will see Aliyah’s photo and ask about her. Everyone’s journey is different, so I’m careful about what I tell them.

Honoring Aliyah’s memory

My family has found other ways to honor Aliyah’s memory as well. Her birthday was September 19, during Childhood Cancer Awareness Month. Last year to celebrate her birthday – a few months after she passed away—we collected boxes of fun band-aids to support the hematology/oncology unit at CHOC’s band-aid drive. You might think a band-aid is a small gesture, but to a hospitalized child, a band-aid in their favorite color or bearing their favorite character, can be a bright spot.

rosemary_lemonade stand
This year on Aliyah’s birthday, her family held a lemonade stand to raise money for CHOC.

This year for Aliyah’s birthday we held a lemonade stand to raise money for CHOC. We had a great turnout—family members, friends, neighbors, community members, even the fire department showed up! We donated the funds raised to support research efforts by Aliyah’s oncologist, Dr. Ashley Plant.

Making my daughter proud

Throughout Aliyah’s battle with cancer, I felt so grateful for the way her team at CHOC cared for her. That’s why I’m back, volunteering at CHOC—to have a chance to pay it forward to other families and the staff here.

I think the way I am serving other CHOC families would make Aliyah proud.

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The benefits of neurostimulation: Diyya’s story

Diyya never thought the treatment plan for her chronic and debilitating stomach pain would be a small device behind her ear.

She’d been traveling with her family when everyone came down with food poisoning. Hers just never seemed to run its course.

“Something still just felt a little bit off,” she says.

A few months later, she fainted during a cooking class — but since she has a family history of fainting, she wasn’t too concerned. Despite taking it easy and resting, Diyya’s stomach pain persisted, and she experienced rapid weight loss.

She started seeing a variety of gastroenterologists ― doctors who specialize in the digestive system ― and received a slew of potential diagnoses, ranging from lactose intolerance to stomach paralysis, a condition that prevents the stomach from emptying its contents properly and often causes nausea and vomiting.

Diyya’s stomach pain started affecting her day-to-day life. She was throwing up several times per week, and some days she was too sick or weak to leave the house. Diyya missed so much school that she needed special accommodations for schoolwork and standardized testing.

She also stopped eating flavorful foods she’d once enjoyed and stuck to plain foods like rice and roasted vegetables.

“I got used to eating bland food,” Diyya says. “I would rather eat boring food than eat something good and be sick.”

The quest for a diagnosis

Eventually, Diyya and her parents were referred to Dr. Jeffrey Ho,  a pediatric gastroenterologist at CHOC Children’s. He recognized that Diyya’s problem was related to the muscles in her digestive track and ordered an upper endoscopy, also called an esophagogastroduodenoscopy or EGD, to get a better idea of what was causing Diyya’s pain.

dr-jeffrey-ho-choc-childrens-gastroenterologist
Dr. Jeffrey Ho, a CHOC Children’s gastroenterologist

To perform an EGD, the doctor uses a long, flexible lighted tube called an endoscope. The endoscope is guided through the patient’s mouth and throat, then through the esophagus, stomach and the first part of the small intestine called the duodenum. The physician can examine the inside of these organs and detect abnormalities. Through the endoscope, the physician can also insert instruments to get samples for a biopsy. Diyya’s EGD and biopsy were normal.

She tried a few different herbal and traditional medicines, but nothing seemed to alleviate Diyya’s pain and symptoms. Hypnotherapy was helpful, but her main issues of stomach pain and nausea persisted.

A diagnosis and a path forward

Diyya was ultimately diagnosed with functional abdominal pain, meaning there’s a disconnect between the way her brain and gut communicate. She was also diagnosed with an allergy to barley and found that eating gluten contributed to her vomiting. Since her functional abdominal pain was accompanied by constipation or diarrhea, it is considered irritable bowel syndrome or IBS.

Diyya started working with Dr. Ashish Chogle, a pediatric gastroenterologist at CHOC.

dr-Ashish-chogle-choc-childrens-gastroenterologist
Dr. Ashish Chogle, a CHOC Children’s gastroenterologist

“A lot of patients with functional abdominal pain have been told by physicians elsewhere that their pain is all in their head. That they’re just anxious. I tell them it’s true pain,” Dr. Chogle says. “For the first time, a doctor is justifying their pain and giving them a path forward.”

Diyya’s path forward was something called neuro-stimulation, or neuro-stim—through the IB-stim,, a small device  placed behind her ear. Subtle electrical pulses originate in this device and travel through short wires and into needles attached to nerves in the ear. These gentle stimulations target nerves and aim to relieve chronic and acute pain. The IB-Stim is a non-drug alternative for acute and chronic pain that alters the way pain pathways function.

“It’s rewriting the nerves and helping my stomach pain feel better,” she says.

Neuro-stimulators are applied in a clinical setting, and remain active for a few days, while the patient resumes normal activity. On the fifth day, the patient removes the neuro-stim at home. On day seven, they return to the clinic and a new device is applied. This process typically repeats four times, for a month-long course.

gastroenterology-clinic-exam-table
Diyya’s care team decorated the exam table to welcome her to the gastroenterology clinic.

Diyya felt tiny pulses behind her ear the day after her neuro-stim was applied.

“The cool thing about neuro-stim is that your ears get used to the pulses,” Diyya says. “You notice it at first, but then you don’t notice it after an hour or so.”

The benefits of neuro-stimulation

A week later, Diyya was already feeling better than she had in a year.

“What I would’ve taken for granted before, suddenly became achievable again,” she says. “First, I could bend over and tie my shoe without pain. Then I could go for a walk, and even go back to a full day of school.”

Diyya began to put on weight — a good thing, since she had lost weight from eating a minimal, bland diet. She was strong enough to start physical therapy, a necessary part of rebuilding her strength, since her muscles had atrophied from a lack of physical activity.

“Finally, I could eat more normal food again. I could start becoming more active. I felt like I was finally getting back to normal,” Diyya says.

Diyya began neuro-stim around the same time as another teenage patient, and they were able to swap tips and bond amidst a shared experience. Their moms did, too.

“Since your neuro-stim can’t get wet, it’s tricky to wash your hair,” Diyya says. “I’d been using a shower cap, and she had found a great dry shampoo. I brought her my favorite shower cap, and she brought me her favorite dry shampoo.”

Diyya’s mom, Priya, had a hard time seeing her daughter struggle and was comforted by meeting another mom who understood what she was going through.

“As a mom, it was very hard to see Diyya deteriorate right before our eyes. We went from having an active child who loved to eat to a child who was so weak that she couldn’t get up to go to school,” Priya says. “It felt like, as parents, we were on the journey alone. When I met another patient’s mom at the neuro-stim placement appointment, it was so wonderful to have someone to talk to who understood what we were going through. We exchanged information about different providers and tips for managing school absences.”

The device, approximately 1 ½ -inches in size, is discreet.

“I always wear my hair up, and anyone who did notice my neuro-stim assumed it was a hearing aid,” Diyya says. “When anyone at school asked about it, I was able to educate them about this really cool technology that they’d never heard of before.”

Diyya's neuro-stim
Diyya’s neuro-stim was discreet, and sat behind her ear.

Getting back to her old self

In addition to seeing physical benefits from her neuro-stim treatment, Diyya is getting back to her old self.

“Diyya is a new person after this experience. This experience has definitely taught her what the word resilience means. Before she was sick, everything from grades to sports came easily for her,” Priya said. “She is still working on accepting of her new normal. Sometimes she misses being able to eat whatever she wants or exercise without fatiguing.”

A talented musician, Diyya was able to join her school’s marching band, an activity she “wouldn’t even have thought possible” when she was sick, she says.

marching band
Diyya and her mother after a marching band performance.

Sticking to a schedule also helps her feel her best. Starting high school and a new schedule led to a flare up of pain, so she did a second course of neuro-stim and is now back on track.

“For me, the level I’m at right now is wonderful,” Diyya says. “I can go out with my friends, go on bike rides with my dad, and travel with my family. I don’t know what it would be like today without my neuro-stim.”

A high school sophomore, she plays two instruments, is active on her school’s debate team, works part-time, and is considering a potential career in medicine.

Taking an active role in her healthcare

Of her experience as a CHOC patient, Diyya adds, “It was unusual for me to have a doctor talking directly to me, and asking questions of me, and not just talking to my parents. Dr. Chogle wanted to make sure that I was comfortable with everything, not just that my parents were OK with it. He spent a lot of time with us, and never made us feel rushed.”

Through these health challenges, Diyya has learned how to take an active role in managing her overall health.

“Diyya has learned how to communicate with the school nurse and her healthcare providers effectively,” Priya says.

As a parent, Priya is grateful that her daughter has access to cutting-edge treatment. Her team also recommended acupuncture and cupping, which have served beneficial during stressful times like finals week and AP testing.

“I am so grateful that Diyya has access to a healthcare team that takes the time to research what innovative options there are for the patients. Seeing the spark in her eye come back is priceless.”

This experience has made Diyya more sympathetic of others.

“Especially since my diseases were not very visible, I learned not to judge someone based off of just their looks,” she says. “You never know what they might be going through. It’s cheesy, but it’s true.”

Learn more about pediatric gastroenterology at CHOC

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Goodbye Popsicles and pain killers: How painless tonsillectomies are changing CHOC patients’ recoveries

After hearing her mother’s stories of the aftermath of her teenage tonsillectomy, Jenna Opp was a little worried before undergoing the procedure herself.

jenna-underwent-painless-tonsillectomy

But thanks to a different technique offered by CHOC Children’s otolaryngologists, Jenna drank a smoothie right after the procedure, and by that night, she enjoyed eggs and French toast for dinner. Only two days later she was back in school and ready for a hamburger.

“I was expecting a lot more pain and not being able to talk and all those typical things,” the 18-year-old says. “But I was totally fine. I could eat and drink. I talked to my mom while I was still in the recovery room.”

jenna-painless-tonsillectomy-preop
Jenna, before her painless tonsillectomy

Jenna underwent a procedure called an intracapsular tonsillectomy, wherein CHOC otolaryngologist Dr. Nguyen Pham deftly shaved away at her tonsil, leaving a small portion behind.

In contrast, a traditional total tonsillectomy removes the entire organ, increasing bleeding risk and exposing muscle behind the tonsil, which increases pain.

In addition to decreasing the risk of post-operative bleeds, which can be fatal, the intracapsular tonsillectomy technique has shown to dramatically lower hospital readmission rates due to pain and dehydration.

Further, patients like Jenna do not require opioid pain medication and are returning sooner to school and a regular diet, Dr. Pham says.

“They offered to do it the old way or the new way,” Jenna says. “They told me the new procedure is way less painful and only takes a couple days for recovery. I was like,  ‘I’m sold on that’ and it was awesome.”

Here are some frequently asked questions about intracapsular or painless tonsillectomies:

Q: Do the tonsils regrow?

A: The regrowth rate of intracapsular tonsillectomy at CHOC is 0.5 to 1%.

Q: Does an intracapsular tonsillectomy take longer than a traditional tonsillectomy?

A: No. The procedure takes the same amount of time – 30 to 45 minutes.

Q: Has this procedure been practiced in other places?

A: Intracapsular tonsillectomy is growing in popularity in the United States. Elsewhere in the world, such as in Sweden and France this procedure is already the preferred method of tonsil removal.

Q: Will a patient need pain medication after this procedure?

A: Usually children will require only over-the-counter pain medication for a few days after surgery. Some children do not require any pain medication.

Q: How old does a child have to be for intracapsular tonsillectomy?

A: There are no age restrictions for this procedure.

Learn more about tonsillectomies at CHOC.

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