A surprise heart defect diagnosis in utero: Teddy’s story

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.

Teddy spent four days in the cardiac neonatal intensive care unit (NICU) at CHOC before undergoing open heart surgery.

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.

pre-op room with toys
Teddy playing with toys before an angioplasty,

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 today

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.

bumblebee boy costume
After his last angioplasty, Teddy requested a photo shoot dressed as his favorite superhero. Bumblebee Boy.

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.

Learn more about the Heart Institute at CHOC Children's

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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 neurostimulation 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.

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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 Celiac disease and found that an allergy to barley contributed to her vomiting.

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 neurostimulation, or neuro-stim. With neuro-stim, a small device is placed behind the 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. Neuro-stim is a non-narcotic 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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More than just a picky eater

Jack’s start in life was not an easy one.

He was born prematurely in northern California and immediately needed surgery for an intestinal blockage. He weighed only one pound and looked very sick.

The intestinal surgery was hard on his tiny body. “He was on life-support, and I was terrified,” said Meredith, Jack’s mom.

By five months old, he had gained weight very slowly and still struggled to keep food down.

Jack’s battle with food would last another 6 years.

“We looked everywhere for help but no one could give us any hope,” expressed Meredith. “Jack never ate much, showed signs of hunger or cried for food when he was a baby. We were given medication by our local doctor to make him hungry, but the side effects were horrible.”

Jack was much more than just a picky eater. Because of his prematurity, he missed normal feeding milestones. He didn’t learn how to experience food in his mouth and body or understand hunger signals. This made him uncomfortable and afraid when food was given to him.

By 6 years old, Jack was frail, his hair was falling out and he had been admitted to the hospital several times for dehydration. He would eat limited amounts of mac n’ cheese, cheeseburgers, strawberry hazelnut crepes and a specific type of pesto from the farmers market.

“People often would tell me that ‘Jack will eat when he’s hungry’ or ‘Kids don’t just starve themselves,’” says Meredith. “But my kid, who has feeding issues, would have 100 percent starved himself. Eating was stressful for him; it wasn’t fun, and it wasn’t enjoyable.”

Meredith felt lost until she found CHOC Children’s Multidisciplinary Feeding Program—she was afraid it was Jack’s last chance.

CHOC’s Feeding Program, started in 2003, is led by pediatric gastroenterologist Dr. Mitchell Katz. The first-of-its-kind program offers a comprehensive, positive and holistic approach to treating disordered feedings in a child and family-centered environment.

“I had a lot of anxiety coming here because I didn’t know what to expect or if it would even work,” says Meredith. “But the second I stepped into this place, it was wonderful. For the first time, I felt like I had support and a team who can help take the lead instead of feeling like it’s all on me.”

Jack, of course, loved being at a hospital made just for kids. He was soon a regular at Seacrest Studios—an in-hospital radio station run by CHOC’s child life specialists—making music videos, playing games and just being a kid.

jack-with-angels-players
During Jack’s stay at CHOC, he enjoyed a special visit with Angels players.

The Feeding Program runs over the course of three weeks and each child’s schedule at the hospital is planned every step of the way. Meredith and Jack’s typical day looked like this:

jack-feeding-program-schedule
Jack’s feeding schedule

While most days follow the same schedule, Jack’s goals changed each week to focus on helping him learn new skills. During the first week, Jack was treated by a feeding therapist for all his meals while his mom watched from a separate room. A psychologist or social worker explained to Meredith the therapy and strategies being used along with Jack’s reactions. By the third week, feeding sessions began to mimic meal times at home. Both parents could participate and lead mealtimes so they would be confident and prepared to feed Jack at home.

jack-face-paint
Jack’s care team loved the progress he was making in the feeding program, and Jack loved being at a hospital just for kids.

Jack made rapid progress. Before the program, he was consuming around 800 calories a day. By discharge he was consistently accepting 1,600 to 2,000 calories every day. This intake came from high-quality foods including vegetables, omelets, fruit, sandwiches and also, from foods that you would expect all kids to love: blueberry pancakes and bean and cheese burritos. These were all items that he would never have touched before.

jack-soccer
Before joining the feeding program at CHOC, Jack would barely eat. Now, his relationship with food is better and he’s getting stronger everyday.

Jack’s remarkable journey is a credit to his integrated and skilled team that has consistently seen a high rate of success. It is also a credit to the way Dr. Katz connects with his patients.

“Dr. Katz calls Jack ‘Nose’ because of the funny thing he used to do with his nose whenever he was introduced to new foods,” says Meredith. “In return, Jack calls Dr. Katz, ‘French Toast.’”

Coincidentally enough, if you ask Jack what food he loves now, he’ll emphatically say French toast…with lots of maple syrup.

Learn more about CHOC's feeding program

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What it’s like to live with cystic fibrosis

kaleb-choc-childrens-patient
Kaleb chronicles life with cystic fibrosis

By Kaleb B., 18-year-old CHOC Children’s patient

I was born with cystic fibrosis (CF), an inherited life-threatening disorder that damages the lungs and digestive system. For years, I blamed myself for having CF. It made no sense to blame myself for something I was born with, but I couldn’t stop. I now understand that CF isn’t my fault.

What is cystic fibrosis?

CF is a disease caused by a missing protein in your genes. In a person with CF, the body produces mucus that is thicker and stickier than it should be. Everyone’s body makes mucus, and a person without CF can get rid of that mucus by coughing. But for someone with CF, the thick mucus is harder to expel, so the bacteria get trapped in the body, which leads to infections. This can also damage and scar the lung tissue. If left untreated, it could end up causing organ failure.

What does this mean for the rest of the body? The thicker mucus doesn’t move as easily, and it clogs passages in many of the body’s organs. Mucus buildup leads to complications ranging from mild or inconvenient to detrimental. The digestive system and lungs are the two systems CF hits the hardest. It can cause difficulty processing food, but the worst consequence of mucus buildup is the infections that can stem from it.

CF is a cyclical journey. I’ll be healthy for a while, but then I’ll catch something new, and my body will respond well to antibiotics. Then I’ll come down with something else, or the infection I’m fighting will become resistant to a medication that used to work. When I get really sick, I have to be admitted to the hospital for IV medication to try and get my health back on track.

Great strides have been made to cure the genetic mutation that causes CF, but for now, the infections caused by thickened mucus are dangerous and hard to treat.

There is no cure for CF. As little as two decades ago, most people with CF wouldn’t live to see their 18th birthday. Now, statistics show that nearly 40% of people living with CF in the U.S. are 18 years or older. More than half of people with CF will live into their thirties.

Learning to accept your cystic fibrosis diagnosis

There are limitations to what I can do daily because of my health and medicines that affect me. For example, my energy level isn’t consistent—some days I can make it through the day with ease, and other days I run out of steam fast. It’s frustrating, but I am trying to work with it and accept it.

It’s not my fault that my body works this way; I just have to work with what I have.

Despite having CF, there’s still a lot I can do— like writing articles such as this one, sharing my experience with CF.

Cystic fibrosis is a team sport

Over the last year, I’ve had more health challenges than ever, including unexpected infections and too many antibiotics to count. For a while, I was losing hope and felt overwhelmed, but I kept pushing on— and people around me helped keep me going. Their support was crucial to me being able to persevere, and now I’m on the other side.

Your disease doesn’t define you

What I’ve learned over the past year, through these health issues and my success despite them, is that disease doesn’t define me. It’s what you do despite disease that shows who you truly are. It’s how you fight through those battles that reveals your character.

It’s never easy to deal with a chronic illness. But now, I can separate my disease from my self-worth. My CF has never been tied to how valuable I am. Although it is an enormous part of my life and a strong force behind many of my frustrations and insecurities, CF is not who I am. My identity isn’t tied to my disease. I can’t change that I have it, nor the effects it has on me physically. I can only approach how I adapt to living with it.

Myths of living with cystic fibrosis

CF isn’t all medication and hospitalizations; there are some benefits to CF. For example, you usually get to eat a lot of high calorie and tasty food without worrying about gaining weight, which is nice! Enduring treatments usually isn’t too bad either, since you can play games or read while you do them, in order to multitask and make it more enjoyable. There’s a lot of ways to keep a good mood and stay thriving during the mundane parts of living with CF, so being creative with that can be helpful!

Questions I’ll hear a lot about CF usually relate to how “sick” I am or if I’m contagious. Rest assured I’m not contagious. I’ll catch illness a bit easier than others, but usually I’m not that sick, as long as I keep up with my meds. If the infections get bad enough, I’ll need a tune-up in the hospital with some stronger meds. But luckily, I’ve been taking pretty good care of myself lately!

To other teens with CF, I would say take every day and make the most of it. Live your life and enjoy it while you have breath in your lungs! Don’t let CF stop you from living.

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Beating brain cancer and giving back: Brodie’s story

Brodie’s cancer survivor party was a chance to celebrate the completion of his cancer treatment by gathering his family and friends for an epic Nerf battle. Wanting to give back to other CHOC Children’s patients, the twelve-year-old boy turned his celebration into a fundraiser. Brodie used the proceeds to buy Legos, journals, games—all his favorite things while in treatment—to brighten the days of other children battling cancer.

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Brodie and his brother shopping for gifts to donate to CHOC patients.

“He wanted to buy more of the things that helped break up his time while he was at CHOC,” says mom Megan. “If you ask Brodie what he wants to be when he grows up, he says ‘I just want to make people happy.’”

Brodie’s journey to a diagnosis

Brodie’s path from initial symptoms to a diagnosis was long. While practicing karate at home, his dad Marcus noticed that his left side didn’t have any “oomph.” Over the next few days, he and Megan realized Brodie was losing coordination in his left hand and left foot.

The first few doctors who saw Brodie ruled out a tumor but couldn’t identify what was causing his loss of coordination. An MRI revealed something on Brodie’s basal ganglia—a collection of nerve cells deep within the brain that help control movement. They were eventually told that Brodie had likely suffered a stroke. Later, another specialist thought it might be iron accumulation on the brain.

“Something looked wrong, but nobody could tell us exactly what it was,” said Marcus.

The family spent 18 months crisscrossing the country, seeking out various pediatric specialists on their quest for answers.

During this time, Brodie had another issue—every five months or so, he would go blind in his left eye for a few days. There was no discernible reason for this loss of vision.

Their quest eventually led them to Dr. Raymond Wang, a pediatric metabolic disorder specialist at CHOC Children’s. He was able to rule out a genetic reason for Brodie’s symptoms, and encouraged the family to seek out the care of the CHOC neurology team. The next time Brodie lost vision in his eye, the family headed for the Julia and George Argyros Emergency Department at CHOC Children’s Hospital. Brodie underwent another MRI, but this time from a different angle due to his eye condition.

They found a tumor.

Another starting line

“The news that Brodie had a brain tumor was not the finish line of the 18-month journey we had been on,” Marcus says. “That was actually the beginning of yet another journey, this one at CHOC.”  

The family was introduced to Dr. Ashley Plant, a pediatric oncologist at CHOC Children’s.

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Dr. Ashley Plant, a pediatric oncologist at CHOC Children’s

“Not only was she professional and a top-quality doctor, but she was also very warm and empathetic in that first meeting,” Marcus says. “She even gave my wife a hug, which made a lasting positive impression.”

Dr. Plant explained that Brodie needed to undergo a biopsy to determine whether the tumor was cancerous or not. Dr. Joffrey Olaya, a pediatric neurosurgeon at CHOC, performed the biopsy.

joffre-olaya-md
Dr. Joffre Olaya, pediatric neurosurgeon at CHOC Children’s

“I was scared to death when he went in for the biopsy. But I knew we were in very good hands with Dr. Plant and Dr. Olaya,” Marcus says.

The biopsy confirmed the mass in Brodie’s brain was a cancerous tumor known as a germinoma. Germ cells are the reproductive cells in an unborn baby. Germ cells that grow in an unusual way can become a tumor. Often, those tumors form in the ovaries or testes. Sometimes during an embryo’s development, these cells can migrate to the brain and result in intracranial (within the skull) germ cell tumors.

A doctor unlike the rest

Throughout their lengthy journey to find a diagnosis, Megan and Marcus had met many different specialists. They consider Dr. Plant a guide on their son’s treatment journey.

“We were, and continue to be, super impressed with Dr. Plant because not all doctors are like her, and we’ve seen a lot of doctors,” Marcus says. “That doesn’t mean they’re not good, but they don’t all have the same bedside manner as she does.”

Throughout the course of Brodie’s treatment, Megan and Marcus had a lot of decisions to make. In those difficult moments, Dr. Plant was right beside them.

“She provided us with all the information we needed to make responsible decisions, but didn’t make decisions for us,” Marcus recalls. “She helped us make the ultimate decisions as his parents.”

Brodie’s treatment plan included six months of chemotherapy at CHOC, followed by seven weeks of proton radiation in San Diego.

Post-treatment, Brodie has returned to CHOC every few months for an MRI of his brain and a check-up with Dr. Olaya.

“We were so grateful to have Dr. Olaya in our corner because he’s always on the ball. He’s very sharp and conscientious, but also very caring,” Megan says. “It might tell you something that when Dr. Olaya comes in the room, Brodie jumps up and gives him a bear hug.”

Finding a familiar face at CHOC

While Brodie was admitted to CHOC Children’s Hospital for chemotherapy, he was visited by a child life specialist from The Cherese Mari Laulhere Child Life Department, a group who strives to normalize the hospital environment for children and their families.

Child life specialists can engage patients in medical play to help them understand procedures and make tests less scary, bring their favorite toys and movies to their rooms, and show them amenities around the hospital like Turtle Talk and Seacrest Studios.

Shayli, the first child life specialist to visit Brodie’s room, turned out to be an old family friend.

“She looked familiar, but as soon as she said her name, a lightbulb went off—we knew her!” Marcus said. “Megan and I have been friends with Shayli’s parents for years, and they’re great people. But we hadn’t seen Shayli since she was a baby—and now here she is, taking care of our son.”

Shayli knew that Brodie loved Star Wars, so whenever characters would make special visits to the hospital, she made sure they didn’t leave before making a special stop in Brodie’s room.

Although Brodie spent a lot of time in his room resting during chemotherapy treatments, he made many visits to the child life playroom as well.

“For a while, it felt like we lived at CHOC, and it was great to have the ability to take Brodie to the play room for air hockey, or watch a movie or play a video game,” Marcus recalls. “There’s nothing you wouldn’t do to take your child’s mind off chemotherapy treatment.”

Brodie today

Despite countless doctor’s appointments and treatments over the last few years, Brodie has no fear of hospitals.

“He’s never met a stranger. Everyone he meets becomes an instant friend,” Megan says. “Brodie gets so excited to see Dr. Plant and the rest of his team. If I tell him that he has an MRI coming up, he’ll say, ‘Sweet!’”

With cancer behind him, Brodie is feeling more like himself. He loves Lego sets, playing X-box with his younger brother Finn, and swimming.

Learn more about the Hyundai Cancer Institute at CHOC Children's

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