Elijah’s Echo



Thomas Silvera’s 3-year-old son tragically passed away after he had an anaphylactic reaction to a grilled cheese at his daycare. Now Thomas is stressing the need for improved food allergy education and training in childcare settings.

By Gary Fitzgerald

Thomas Silvera looked down on his newborn son Elijah in the hospital. “A strong little one,” he thought that day, Jan. 16, 2014. “I went to take a photo of him and he had this fighting pose, as if he were saying, ‘Come on world, I’m ready for you.’”

Like the city he lived in – New York City – Elijah was high-energy from the get-go. He loved playing with blocks and exploring outdoors. He also loved food. His family joked that the acronym for his full name – Elijah-Alavi Affiq Thomas Silvera – was “EAATS.”

But when Elijah was 1 year old, Thomas and his wife Dina learned he had life-threatening allergies to nuts, dairy, eggs and shellfish, among others. He also had asthma.

Like many households, Thomas and Dina both work full-time, so they sent Elijah to a New York City-regulated preschool. They alerted the staff to Elijah’s food allergies and provided the necessary documents, medication and instructions for handling a food allergy emergency.

But on the afternoon of Nov. 3, 2017, an employee at the daycare gave Elijah a grilled cheese sandwich. (Cheese contains dairy.) He took a bite, resulting in a severe allergic reaction. Staff called Dina instead of 911 and did not administer the epinephrine auto-injector the family had provided. When Dina arrived, Elijah was in anaphylactic shock. She immediately drove him to Harlem Hospital.

Doctors were not able to save Elijah’s life.

Now Thomas is speaking up for Elijah, serving as his voice. “I’m creating an echo for him, Elijah’s echo, to raise awareness of the severity of food allergies and anaphylaxis,” Thomas says. He is also speaking out about the urgent need for food allergy education and training in preschools and daycare centers.

On June 5, 2018, seven months after Elijah’s passing, his voice was heard. The New York City Board of Health announced they amended the health code to require two epinephrine auto-injectors be stocked at all city-regulated childcare sites. The code also requires at least one staff member be trained in identifying signs of anaphylaxis and administering an epinephrine auto-injector.

Kaleo, the Richmond, Virginia-based pharmaceutical company that manufactures AUVI-Q epinephrine auto-injectors, is donating 7,500 AUVI-Q devices to equip all New York City childcare sites for the 2018-19 school year.

In a Q&A interview with Allergy & Asthma Network, Thomas Silvera talks about his son’s legacy.

 

Q: What were your thoughts when you heard the news about the New York City Board of Health’s health code amendment?

Thomas: It’s great news. We fought for this. I have stressed the training aspect of the amendment in particular. It’s a step in the right direction for all of us seeking change. I believe it will give comfort to those in the food allergy community who rely on daycare for their children.

I keep stressing that staff at daycare sites must be vigilant to make sure any child with a severe food allergy is protected from accidental exposures and treated with epinephrine in case an accidental exposure occurs.

Daycare staff need to understand what epinephrine is and be able to identify the signs and symptoms of a child suffering from a food-allergic reaction and anaphylaxis. Training is imperative. It may help save a child’s life.

Access to epinephrine auto-injectors and staff training look good on a piece of paper for legislation, but it’s not enough. We don’t know if preschools are implementing these requirements. There needs to be regular checks and follow-through at each facility to ensure safety.

 

Q: What do you want people to understand or learn from your son’s tragedy?

Thomas: Food allergies are not something you just shrug your shoulder at, sweep under the rug, or laugh about. It is as serious as someone having a heart attack or someone who is drowning. A severe food-allergic reaction needs to get the same immediate attention.

 

Q: Elijah also had asthma. You have severe asthma yourself. Do you think there is enough of an emphasis on recognizing asthma symptoms in childcare settings?

Thomas: There needs to be a lot more education and training on asthma, too. Asthma is a respiratory disease that’s often triggered by environmental allergens. As an asthma patient, I am very aware of the signs and symptoms of an asthma flare, but for those who don’t have the condition, there needs to be more education.

 

Q: Regarding your severe asthma, discuss your perspective on managing the condition – for yourself and your son.

Thomas: Early in my life, I had respiratory difficulties. I was born premature, weighing in at 5 pounds.

Since then, my journey with severe asthma has been a long one. Growing up in the late 1970s and through the early 1990s, I frequently had to go to the doctor’s office and the ER with my mother. At the time, many doctors and asthma specialists were still getting a grasp on understanding what asthma was.

In the decades since, I have seen many advancements in asthma. There’s greater awareness now because the number of people with asthma is at epidemic levels, especially in impoverished areas.

Growing up with asthma gave me a better understanding on what to look for, how to manage the condition, and what I needed to do to avoid the triggers that can lead to an asthma flare. I was able to use my experience to monitor Elijah’s asthma, and get him the proper care he needed.

When Elijah was sick with a cold or had seasonal allergy symptoms, it would worsen his asthma; most of the time I knew immediately what treatment he needed so that he wouldn’t have to go to the ER.

 

Q: How has living with asthma and severe food allergies impacted your family?

Thomas: There were times my anxiety level was through the roof, especially when Elijah was away from home. I would worry less when he was at home because I knew he was protected. People may call us helicopter parents, but we were just trying to protect our children. (Elijah’s brother Sabastin also has food allergies.)

At home we removed any allergen that could affect our boys and we started cooking all their meals ourselves. When we went shopping for groceries, we read every single food label. If we doubted the food’s ingredients, we would not purchase it.

Whenever my wife and I left Elijah and Sebastin with family, we would go through a list of foods they could and could not have. I would call ahead of time to make sure they removed foods that could cause an allergic reaction. It may seem like a lot, but it became the new normal for us.

 

Q: You have participated in focus groups discussing your severe asthma. Has this helped you in any way with managing your condition?

Thomas: Participation in the focus groups not only helps me learn about new medical advancements, but it also helps support my primary care physician. I learn about new asthma treatments and medications, and together we look into the possibility of adding it to my Asthma Action Plan.

 

Q: In what ways do you want to honor Elijah’s legacy?

Thomas: My son Elijah did not die in vain. My family and I will be his voice by creating an echo for him, by raising awareness. We plan to start a foundation in his name.

More than 15 million people suffer from food allergies, including 5.9 million children under the age of 18. That’s 1 in 13 children, or roughly two in every classroom. And about 30 percent of children with food allergies are allergic to more than one food.

We all need to come together and collaborate on a platform to make change, and even find a cure. Now how do we do that? It starts with you, me, we. Now is the time we can make a difference.