In this powerful interview with Allergic Living contributor Nicole Smith, Thomas Silvera speaks of the missteps that played a role in their son’s death. And beyond the tragedy itself, Silvera makes the passionate case for what’s missing in food allergy education, especially the gaps he sees at schools in communities with socioeconomic disadvantages. He and his wife contend this simply must change to protect all food-allergic children. Ruben Porras, a family cousin, joins Thomas, adding perspective to some of the heartbroken father’s points.
Allergic Living: Thomas, you’ve started a conversation about food allergies and your son’s death. You filmed your own video; you’ve agreed to this interview. Even though you’re still grieving, why do you feel it’s so important to speak out?
Thomas Silvera: Elijah’s death cannot just go unnoticed. I have another child who suffers from food allergies that I have to protect. I’m very adamant with his school that they are on top of the EpiPen training. I have to be on the forefront of this in order to engage with my community, and everybody out there, to let them know food allergy is not something that you take lightly. It’s very serious.
AL: You are in the medical profession as a surgical technologist and the ambassador for the Association of Operating Nurses. Do you think people are knowledgeable enough about the signs and symptoms of a severe allergic reaction?
TS: I don’t think people, when they say they’re trained, that the training has been consistent. Are you doing the training just to get the credentials to get the job? Or are you doing the training to get the credentials to understand and fight for every child and make sure that no one gets harmed? If you don’t know what to do, it hinders or harms the situation. It makes it worse.
In the medical field, you should do no harm. That’s the oath. A lot of people don’t understand the signs and symptoms of an allergic reaction.
Ruben Porras: Part of why the training was lacking in the area [of the Seventh Avenue Center for Family Services in Harlem where Elijah attended school] is because of a socioeconomic issue where these people were like, ‘we’re taking your kid. It’s a free program. It’s a bare minimum. We’re going to tell you what we have onsite to check the boxes.’
But feeling like they’re going to be held accountable – it’s just not there. It has to do with a lot of the communities that they’re serving.
AL: Thomas, what do you mostly want people to learn from your son’s tragedy?
TS: The only reason we put him in the school was because they gave us the understanding that they had staff that was trained to understand these types of medical conditions and that they had dealt with kids with food allergies. Elijah’s school had medically trained staff, not nurses. They were trained to administer medication as needed. So that gave us the comfort that this educational facility will provide safety for our child.
I need people to get a better understanding of this. For example, you can’t give a child with food allergies a sandwich and say ‘I’ll just remove the contents from his mouth. He will be fine.’ Just the smallest little molecule that he ingested could be life and death. A lot of people don’t understand that.
Elijah also suffered from asthma and eczema so his immediate reaction, like with eating dairy, would be to have trouble breathing. So it can look like, ‘Oh, he’s having trouble with his asthma. It’s probably something that caused him to have this exacerbation of his asthma.’
The school didn’t know what was going on. They thought he was sick with asthma. The problem is that they failed to tell us what actually happened. They knew he had asthma, but there was some information that was left out. We could have better understood what was going on with our son, if they would have mentioned it.
AL: You said something about they were removing contents from his mouth?
TS: I was using that as an example. If you gave my child something to eat, knowing that he’s allergic to it, even if you remove the smallest content it’s not going to change the reaction.
AL: You told me you can’t speak about the investigation as such. But you have said your son was given a grilled cheese to eat at the daycare on Nov. 3. As epinephrine is the first-line drug for anaphylaxis, can you say whether your son was given epinephrine at preschool?
TS: The problem is they made no mention of him having an allergic reaction to anything. I can’t really say anything else about that.
AL: Did he receive any medication for his asthma, like an inhaler?
TS: No. My wife, when she got there, she’s the one who administered the albuterol to my son. She gave him a nebulizer. She gave him everything.
She asked: ‘Hey, did he eat anything?’ And they were like: ‘No. He didn’t eat anything.’ She said: ‘Are you sure?’ The reply was: ‘We’re positive.’
It wasn’t until later on that we found out that they did give him a bite to eat. That’s the unsettling part.
AL: Tell the food allergy community a little about Elijah-Alavi Affiq Thomas Silvera. What did he love doing? Give us a sense of your son.
TS: From the minute he was born, he had this face of a fighter. He was very fearless. He didn’t want to crawl. He pushed himself to walk. Elijah always wanted to be independent from his brother; they’re 17 months apart. His attitude was very bubbly, very caring. He was very imaginative and very creative.
He was also very loving. The last thing that I heard from him before I went to work that day was, “make a hug.”
AL: When was Elijah diagnosed with dairy allergies and asthma?
TS: Before he was 1 year old, he was having trouble breathing. I’m an asthmatic myself. We took him to the hospital and they diagnosed it as ‘undiagnosed respiratory disorder.’ Because he was so young, they couldn’t diagnose him with asthma. He took medication only as needed, so if he had a cold or allergies, it would irritate the asthma.
At a little over a year, we did a blood test for allergies. We found out he was allergic to berries, nuts, eggs, dairy – casein was the highest – shellfish, and Alaskan pollock. We eliminated all those from our home.
AL: Had Elijah experienced an allergic reaction before Nov. 3? Or anaphylaxis?
TS: When he was about a year, mommy gave him oatmeal and grapes. He broke out so bad from eating the grapes, we had to take him to the hospital. It was a scary time. That was the first time I’d experienced anaphylaxis in anybody. We were at the hospital for almost the whole day because he was so young.
Before he turned 2, we put him in a daycare center. We told them as well, ‘he’s allergic to dairy’. We gave them all his Benadryl and EpiPen medications.
I get a call from the school one day, ‘Oh your son is having trouble breathing. I think he’s having an allergic reaction to something.’ I was like, ‘Call 911 and give him his auto-injector.’ They said: ‘Oh, we can’t do that.’
Why would you say that you can take the EpiPen and that you can do xyz, but you’re not going to do this?
They didn’t call the ambulance. We get there. I immediately gave him Benadryl. We had to give him the EpiPen and rush him to the hospital where he was admitted. We had to pull him out of that school.
AL: That’s not the same daycare he was at on November 3?
AL: They wouldn’t even give him Benadryl?
TS: The director of that school was like, ‘No, the parent needs to be notified first. And they need to be here first.’
RP: Elijah had an IEP [Individual Education Plan], and all over his IEP – in fact, in places it was written in big bold letters: ‘no dairy’ ‘no milk.’ And almost every single evaluation, it was written in his IEP which the school had on site. It’s just ridiculous.
AL: In your son’s tragedy, do you think there’s an element of people failing to appreciate either the seriousness of food allergies in general or perhaps even more so with “dairy allergy,” which sometimes gets confused with lactose intolerance?
TS: I think they don’t take food allergies [in general] as serious. That’s my biggest issue.
AL: Soon after Elijah’s death, the New York City Administration for Children’s Services (ACS) announced it had issued “clear guidelines to EarlyLearn Centers on caring for children with food allergies,” and would undertake “enhanced training.” Has the ACS spoken to you directly about what they are doing? Are they doing enough?
TS: No. The only thing that I’ve heard is them mandating the 911 call first, before you call the parents in an emergency situation. To me it’s like, ‘we’re going to put a Band-Aid on this news to give comfort to everyone’s ears, so it looks like we’re taking care of things.’
How do we know if it’s actually being implemented? Where’s the accountability for Elijah? All these places are actually going to be trained and retrained? I don’t know that. It’s kind of sad.
AL: Let’s go back to Ruben’s comment about a school checking the boxes to show “we’re trained.” Maybe because of the socioeconomics of the school, no one would ever ask for more than that. Do you agree with Ruben?
TS: I do agree because they don’t deal with parents like me and my wife. There are many people who send their kids to school and whatever happens, happens. That’s not so with us. These teachers or paras check the box, but they don’t expect parents like us to be on top of these things. And also, it’s a socioeconomic thing as well. It’s the area that we live in.
RP: What’s unfortunate is that a lot of the parents who were sending their kids there [the Seventh Avenue center] are working jobs where they don’t have the luxury of really thoroughly sitting down and checking in with staff. They have to drop their kids off and run. They can’t dig in deeper about – what is the certification, and who are the people, and how many people are on staff are trained – because they’re overwhelmed. In the back of their mind, folks at these agencies kind of understand that.
And [they say] because we have a lot of kids, we’re overwhelmed also. And you don’t have the resources and the luxury to come check on us, so we don’t have the resources and the luxury to hire more staff to be more diligent with your kids. We’re doing the best we can.
AL: Elijah’s story continues to generate an enormous amount of sympathy, and even strangers have been generous on the GoFundMe page to help your family. What has that support and sympathy meant to you and your wife?
TS: At first, you feel like you’re alone in this. We didn’t know about all these people who dealt with food allergies. Reading every single message from people that’s on there – it was a wakeup call. This cannot happen again. Not to a child. Not to an adult. Not to anyone.
I always felt like it’s just us and we’re going to do all this alone. I didn’t know about all of these organizations, support groups and resources. I didn’t know about any of that. I wish I was more active in advocating when I found out about it (food allergies), but I didn’t know.
AL: Can you speak a little about how your wife is coping. And does she also want to see action to prevent further tragedies?
TS: She does. She’s 100 percent [committed]. If anything, she can be a lot stronger than I am. She wants to see change done immediately.
AL: Elijah has a big brother, Sebastin, who also has food allergies. It must be so difficult for Sebastin to understand what has happened to Elijah. How is he doing?
TS: We noticed that he kept asking, “where’s Elijah?” and that just broke our hearts. We sat with him and said: ‘Elijah is not going to be with us. He’s in heaven.’
He’s adapting a lot better now. We have counseling that’s going to be provided. ACS is also providing counseling for him to cope better. We’ve changed everything in his room so it didn’t feel like Elijah was missing.
It still breaks my heart. They would fight and would hug right afterwards and apologize.
AL: Do you plan to continue to draw attention for change in preschool and schools in New York? Do you have plans for doing this via a website, speaking or Instagram?
TS: Ruben and I have been working closely with FARE [Food Allergy, Research & Education]. We’ve been looking into some current laws in place and looking to amend them because there’s a law in place only for grades K-12.
RP: We’re working with different assemblymen and different council members in the New York State Senate on expanding the [school food allergy] law so it addresses work conditions and protocols with all agencies that are working with children – be it pre-Ks or home daycare centers or early intervention centers.
TS: [Elijah’s death] was such a preventable event. Every day it’s a surreal thing for me.
My wife and I – we want to create a foundation in my son’s name, and to be an advocate for children, and hopefully to work and put in a scholarship in my son’s name as well. I want to voice my son’s legacy. I want that to be the focal point of my life.
I need to push as hard as that little child pushed in the Emergency Room because he fought for his life. I have to keep fighting for him afterwards.
By creating this echo, as we call it #Elijahsecho, I need this to reach as furthest as it can go. His voice needs to be heard through us, through you, through everybody who has food allergies. I don’t want my son’s passing to be in vain.
My wife and I and my family are there to advocate for the food allergy community. It’s time to create a bigger alliance. We need to push this even harder.