Shelby Harris is no stranger to facing challenges; throughout his football career, Harris has remained as a strong and steady defensive lineman with a career 22.5 sacks as a pass rusher prior to joining the Seattle Seahawks in 2022 (since joining the Seahawks, Harris has registered 29 tackles, 13 assisted tackles, and 2 sacks). But one of his biggest challenges he faced off of the field: his son’s diagnosis of food protein-induced enterocolitis syndrome (FPIES).
In 2020, following a Week 16 game between the Denver Broncos and the Los Angeles Chargers, Defensive End Shelby Harris and his wife Stephanie welcomed their fourth child, son Shelby Lamar Harris Jr., into the world. Shelby Jr., for all intents and purposes, has been a healthy and happy child. But in the summer of 2021, Shelby Jr. became ill after ingesting some formula – and the diagnostic journey began.
Recently, Shelby Harris sat down with me to talk about what FPIES is, Shelby Jr.’s experience with FPIES (and how he is doing today), and advice for other parents who might be going through a new diagnosis.
The Diagnostic Journey
In 2021, Harris was on a flight to Chicago; Stephanie was watching the children at home. Her friend, a travel nurse, was visiting. At first, it seemed like any other day – until it was time to feed the children. Harris explains:
We were in the process of trying to switch my son from breastfeeding to a milk and formula mix. It was our first time trying it and everything seemed to go well. But an hour later, he started vomiting profusely. Then he went into shock: not moving, not being responsive. My wife and our friend rushed him to the hospital, and our friend said he almost coded in the back seat. It was a really scary time.
Shelby Jr. was admitted to the hospital as doctors worked to figure out what was happening. At first, doctors seemed unsure. Says Harris:
We heard all of these different terms or ideas being thrown around. Could he be epileptic? Was it meningitis? It was really frightening to hear that our son might be that sick.
However, after some IV fluid and some monitoring, Shelby Jr. seemed to recover. He was sent home with his family; they kept a close eye on him from then on. But nothing happened – not at first, anyways. It wasn’t until they tried giving him formula again that he reacted and became alarmingly lethargic.
This time, Harris and his wife brought Shelby Jr. to the hospital together and insisted that the doctors determine what was going on. Their pediatrician mentioned that they should tell the hospital – whose infectious disease team was examining Shelby Jr. – to explore FPIES as a potential option. But, says Harris, many people seemed reluctant to accept that as a possibility:
With FPIES, there is no distinct test. You have to go off of history and symptoms and just kind of assume it’s FPIES. Our doctor did not believe us at first. It was frustrating to hear some of the condescending tones when we asked about FPIES. One doctor even swore that FPIES did not make any sense. They settled on something else and wouldn’t listen. Whenever they said he was epileptic, I was saying that it was not seizures. Right then, I knew that we were going to have to fight for our son.
During this time period, Harris watched as his son underwent numerous forms of testing, including two spinal taps. It hurt the parents to see their son go through so much pain and trauma. However, the situation began to shift when Harris mentioned that both reactions had occurred after formula feeding. Suddenly, he says:
Everyone finally started taking the FPIES diagnosis seriously.
What is FPIES?
Food protein-induced enterocolitis syndrome (FPIES) is a rare non-IgE mediated food allergy that impacts the gastrointestinal tract. Unlike other food allergies, reactions may not occur immediately and do not show up on regular allergy tests. FPIES typically presents within the first two years of life and affects an estimated 1 in every 7,000 infants. While any food can trigger a reaction, the most common triggers are milk and soy, with other common triggers including rice, oat, and egg. For Shelby Jr., dairy is the biggest trigger. Harris explains:
His stomach can’t break down the necessary dairy protein, which causes vomiting and shock. The doctors told us that there is a different threshold for each person in terms of how much they can ingest before it causes an episode. With Shelby Jr., he chugged a bottle of formula which passed the threshold.
In those with FPIES, infants present with significant, repetitive, and profuse vomiting within one to four hours after the food trigger is ingested. Additional symptoms include diarrhea, pale skin, low body temperature, lethargy, dehydration and “floppy” muscle tone. FPIES is often misdiagnosed as a bacterial or viral illness, and an accurate diagnosis often depends on looking at symptoms, history, and a physical diagnosis.
Many children outgrow FPIES and the condition resolves with time. However, during the period in which children are affected, treatment involves identifying and strictly avoiding any trigger foods. As Harris explains:
It was explained to us that you need two years of no episodes to move past it. So if they have another episode, the clock starts all over again. We’ve had accidents because he has siblings. In fact, the number one way of contamination is through siblings. But we have actually had no additional episodes since we figured it out in the hospital. We even give him a little bit of dairy since doctors say that this could help him long-term. Luckily, his tests are beginning to change, and we’re hoping that he’ll outgrow this soon.
Learn more about food protein-induced enterocolitis syndrome.
Being an Advocate
Currently, outside of his FPIES, Shelby Jr. has no other health problems. When asked how his son was doing today, Harris laughs before he says:
He’s good. He’s got a little attitude today, but other than that he’s good. Honestly, you would never know that anything was going on with him except for the fact that he can’t really have dairy for the moment. There’s nothing that really holds him back.
The family is working to schedule another FPIES test, but has managed to avoid any significant health impacts. Harris says that the family is truly thankful for their pediatrician because, without her, they never would have pushed for an FPIES diagnosis. He shares:
Who knows what my son would have gone through if we didn’t have an advocate by our side during that time? Having a good doctor that you trust, building that rapport, and having that parental instinct of ‘something is going on with my child’ really helped us.
Speaking of the parental instinct, Harris reminds all parents that trusting their instinct is really important when it comes to taking care of your child. Many parents of children with rare or chronic illnesses often have concerns, but don’t know the right way to share those with the doctors. Says Harris:
Trust your instinct and don’t be afraid to ask questions. Who cares if the doctors get annoyed with you about it? You aren’t there to make them comfortable. You’re there to make sure that your child is taken care of. That is the only thing that matters: that your child is taken care of the right way. So don’t ever be afraid to advocate for them. I can only imagine what would’ve happened that first time if my wife wasn’t such a great advocate.
Outside of sharing his son’s story and being an advocate, Harris has also raised FPIES awareness through the NFL’s My Cause My Cleats initiative during Week 13, through which players can support causes that resonate with them. For the past two years, in honor of his son, Harris has supported the FPIES Foundation, a 501(c)(3) nonprofit organization that aims to provide a lasting and secure foundation for the FPIES community.
Altogether, the Foundation is dedicated to offering tools for education, support, advocacy, and research to overcome the challenges associated with living with FPIES. On the Foundation’s website, you can find family stories, events and outreach opportunities, an FPIES toolbox (and other resources) for families, learning opportunities for healthcare providers, and information on the FPIES Patient Registry. You can learn more about the FPIES Foundation via Facebook, Instagram, or Twitter.
