Leading Experts, Determined Parents Find Answers, Hope for Son
Brayden and his parents, Abbie and Buzzi, are more familiar with hospitals, doctors’ offices, tests, procedures and surgeries than any family should or wants to be. That familiarity started when Brayden was just an infant – a seriously ill infant.
He would projectile vomit each time he ate food, sometimes vomiting more than 20 times every day. He would cough and choke regularly, including throughout the night, which left the entire family emotionally and physically exhausted. His symptoms didn’t end there. Brayden was also covered from head and toe in eczema, which was undoubtedly itchy and uncomfortable for the infant.
These symptoms led to Brayden being very, very sick. Because he could not eat without vomiting, he would often wind up in the hospital, lethargic and dehydrated. He would immediately be given IV fluids. Brayden was also diagnosed with failure to thrive because he couldn’t get the nutrients he needed to grow and develop.
“It took a long time before we could figure out what was causing Brayden’s symptoms,” Abbie explained. “We changed his formula to rule out allergies. We tried medication to treat possible reflux. Nothing was working. It was a very scary time for our family.”
Finding Answers
After taking Brayden to several doctors throughout Arizona, Buzzi and Abbie did research on their own to try to figure out what was wrong with Brayden. At 8 months old, an endoscopy and biopsy were performed. Brayden was diagnosed with eosinophilic gastritis (EG) and eosinophilic esophagitis (EoE), a chronic immune system disease in which a white blood cell, called an eosinophil, builds up in the lining of the esophagus. This buildup can damage the esophageal tissue, which can then lead to difficulty swallowing or cause food to get stuck when a person swallows. Both of which are a type of eosinophilic gastrointestinal disease (EGID).
At the time of Brayden’s EGID diagnosis, his family traveled out of state for Brayden’s medical care. His pediatrician shared with the family that a new EGID Clinic was open at Phoenix Children’s, led by EGID specialists Shauna Schroeder, MD and Cindy Bauer, MD. Brayden now had access to world-class care right in his hometown.
Finally Able to Pack a Lunch for School
At that point, Brayden could still only have a prescription elemental formula. He was unable to eat any “food.” A successful clinical trial, which included a new medication recommended for EGID, suggested by Dr. Schroeder, was about to change that.
Brayden was closely evaluated and monitored by Dr. Schroeder and his allergist/immunologist, Cindy Bauer, MD, to slowly test certain traditional foods. It wasn’t until he was 12 years old that Brayden could enjoy five different types of foods in addition to his elemental formula: white potato, chicken, apple, orange and lemon. Now, he can enjoy his “safe” foods at one of his favorite restaurants.
“When Brayden passed his first food trial for white potato, we were all in tears,” Abbie shared. “The first thing Brayden told us was, ‘I can finally pack a lunch at school,’ even if it meant it was only a small bag of plain Lay’s potato chips and a bottle of water.
“Our society revolves around food for most gatherings and events: pizza parties, donuts, birthday cake or candy at holidays. You don’t realize what a big point of emphasis it is for one child to finally be able to eat his first ‘real’ food at 12 years old,” she said.
Another Bump in the Road
In late 2019, Brayden began experiencing a new and frightening symptom: He had blood regularly in his stool and found himself having to go to the bathroom as many as 12 times a day. He was starting a new medication and continuing his food trials at the time, so his family and doctors weren’t certain if the blood was signaling a new medical condition or a potential side effect from his treatments and food trials.
Brayden’s doctors monitored him closely, but he continued to get worse. He was admitted to Phoenix Children’s in January 2020 after testing negative for e. coli, salmonella and other possible infections. After undergoing several failed treatments, an endoscopy, colonoscopy and biopsies, he was ultimately diagnosed with ulcerative colitis (UC).
“We were in the hospital for three weeks before we found an infusion treatment that we thought helped relieve his symptoms,” Abbie recalled. “The doctors were amazing. It was very hard to see Brayden in that kind of pain and losing so much weight and blood.”
He received his infusion therapy at the Center for Cancer and Blood Disorders for almost three months. Then, COVID-19 put an end to his in-person visits in March 2020.
“Brayden’s symptoms became worse. He was losing more and more blood. He couldn’t walk or move without being in pain. It got so bad that our 8-year-old had to help him walk to and from the bathroom. Brayden would just lay in bed all day and night with a heating pad on his stomach,” remembered Abbie.
Bouncing from Home to Hospital
From March through May of 2020, Brayden was in and out of the hospital. He received several emergency blood transfusions during that time and tried several alternative therapies to control his stems of ulcerative colitis. This stressful time was all taking place during the pandemic. Brayden couldn’t have friends visit him when he was in the hospital, and his parents could only be with him one at a time. They were juggling Brayden’s health issues along with working full-time and helping the kids with online school, among other things.
“My husband and I would switch off at night, so we both had time at home with our youngest child and at the hospital with Brayden,” Abbie shared. “My husband, daughter and I would meet in the hospital parking lot to eat dinner in the car together. Our dogs even joined us since Brayden missed them so much. We would FaceTime Brayden from the car, and he would wave to us from his hospital window so that we could all spend some family time together.”
A Small World, A Lifesaving Procedure
Throughout the spring of 2020, Brayden and his family were closely followed by the Inflammatory Bowel Disease (IBD) team at Phoenix Children’s. One of the providers – who just happened to be the division chief Gastroenterology and Hepatology – had a surprising connection to Abbie.
“When we met Dr. Ashish Patel, he told us he came from Dallas. I mentioned off-hand that my sister was a doctor in Dallas. It turns out he did his residency with her,” shared Abbie. “Later, I realized my sister had even given me Dr. Patel’s contact information when Brayden was first diagnosed with EGID. I had already spoken with him more than 12 years ago.”
Even with a familiar face on Brayden’s team, he wasn’t getting better. In July 2020, it became clear that he needed a colectomy to remove his colon. It is a big decision for parents to allow a major organ to be removed from their child’s body, but Buzzi and Abbie had no choice but to save Brayden’s life. The colectomy was performed over the course of three separate surgeries. The first surgery was in August. Again, things didn’t go exactly according to plan.
The four-hour procedure turned into a lengthy six-hour surgery. Brayden had a heart complication, and the cardiac team was called in to assist and closely monitor his heart. After the surgery, he spent time recovering in the intensive care unit before going back to the gastrointestinal floor.
“The entire team at Phoenix Children’s was exceptional during this truly stressful time,” shared Abbie. “Child Life was amazing in explaining the procedures to Brayden. They also kept him occupied with various activities in his room when he couldn’t have visitors during his lengthy stay at the hospital. The IBD team took the time to educate us on what to expect during and after the surgery. We were so grateful to be there for Brayden’s care.”
Fortunately, the second and third surgeries to complete the colectomy process in October and November went smoother, though not without their own complications. Brayden was finally discharged at the end of November 2020 and was able to recover and spend Thanksgiving at home with his family.
Blue for Brayden
In January 2021, Brayden’s school welcomed him back with open arms. His family, school and the community were eager to give back to the doctors and researchers whose work had done so much for Brayden. So, the school kicked off the new year with a fundraiser for the Crohn’s & Colitis Foundation (CCF) called “Blue for Brayden.” Each child paid $5 to wear blue instead of a school uniform for a day. They generously raised $675 for their local Arizona Chapter.
For his work and strength in getting through such challenging times, Brayden was nominated as the CCF’s Champion of Mission. He was honored at the annual Night of Champions Gala.
“It was a full circle moment for us,” Abbie said. “The entire GI team at Phoenix Children’s came to present Brayden his award.”
Giving Back
It’s moments like this that drive home just how much Brayden’s care team does for him – inside and outside the hospital. And it’s just one reason why it’s so important for the Brayden's family to do what they can to give back to Phoenix Children’s.
“We truly believe in the doctors, hospital and the growth we have seen at the hospital since Brayden was born,” shared Abbie. “The kids in the community deserve to have the best doctors available. We are committed to doing whatever we can to attract, recruit and retain those top providers.”
Early in Brayden’s diagnosis, Abbie also worked closely with the Beach Ball Committee to raise money for the hospital at their annual fundraiser gala. Buzzi and Abbie have worked with other families and providers in the IBD Clinic, sharing their experiences, recommending resources and answering any questions they could. Those connections were formed as part of the Inflammatory Bowel Disease Patient-Parent Work Group (IBD PPWG).
The IBD PPWG allows parents, patients and providers to connect and offer their unique perspectives. These insights often help shape and improve how care is planned and delivered to children at Phoenix Children’s.
For more information about the IBD PPWG, including how you can become involved, click here.
Grateful for Whole Person Care
In Brayden’s short life, he has faced and managed more than many people two, three or even four times his age. In addition to his EGID and UC diagnoses, he also had several other medical conditions, including asthma, food allergies and esotropia, which affects his eyes.
“Brayden’s situation is not a black-and-white case. There are a lot of gray areas when it comes to diagnosing and treating him given his two autoimmune diseases,” Abbie shared. “We need a team that includes many different specialists that work collaboratively, and that’s what we now have at Phoenix Children’s. They look at the full picture and consult with one another so that we can have the best answers and the best path forward for him.”
His family is grateful to have found that at Phoenix Children’s.