This is the story of a virus that changed 6-year-old Ben Oommen’s life forever…and now his father Tony’s story, of living in a whole new world. For our “Special Fathers” series, we hear from the fathers of children with special needs. Listen to Oommen’s special story.
Dad To Dad 1 – Tony Oommen: The Story Of How A Virus Caused His 6 Year Old Son To Suffer A Traumatic Brain Injury
Lee Habib: This is Lee Habib, and this is our American stories and it’s time for our Special Fathers Series, which tells the stories of fathers with special needs children and is brought to us by the Special Fathers Network, which matches up longtime fathers, with special needs children, with brand new ones for fellowship and mutual counseling on their shared journey of ups and downs and you can learn more about it at 21stcenturydads.org. That’s 21stcenturydads.org. And now, here’s our own Alex Cortez with this edition.
Alex Cortez: Imagine you’re happily married, you have two children, and then, this happens.
Tony Oommen: I remember like it was yesterday when this all started to happen because I was, I’d taken the kids to go drive somewhere to buy my wife flowers for Valentine’s day, and we were pulling back into our, into our house, and my son, my son is six, he’s still in a car seat. Um, he had fallen asleep and I’m taking him out of his car seat and he goes into having a seizure, and I had never seen one before and it scared me to death. And then he was nonresponsive after that. I didn’t know what was happening and he wasn’t, mean, he was breathing, but he wasn’t responsive after that first seizure, so I called my sister, who’s a physician and she is marrying somebody who is an emergency room physician. So I called her and then I got on the phone with her, then fiance Matt, and he said, you need to take him to the hospital. You got rushed to the hospital. Um, he, he had a series of seizures over a hundred of them in the hospital over the subsequent five weeks that he was hospitalized. And what it turned out to be was a, was a viral infection or the virus had crossed the blood brain barrier into the central nervous system and the brain and central nervous system don’t have a defense mechanism against the virus.
Ben, fortunately lived, but he came away with damage from that, from that virus to his brain.
Alex Cortez: You’ve been listening to Tony Newman, an Indian immigrant who came to the United States at two years old. Now a vice president of Fidelity Investments, a charitable arm, managing assets of over $20 billion, not bad for an immigrant, and he’s helped issue $3.6 billion in charitable donations. And that’s just over the last year alone.
His work though, didn’t start at Fidelity. You might be surprised by where Tony’s career began.
Tony Oommen: I actually spent a few years after school, five years after I graduated from college in the restaurant and catering industry. Uh, it was, uh, in fact, when my son was born, I was working as I was managing a kosher catering company in Cincinnati. Um,
Alex Cortez: Whoa. Wait a minute. An Indian managing a kosher catering company? Just wanted to make sure I heard that right.
Tony Oommen: The people that own that, uh, that company I was, uh, I was friends with and, uh, their daughter had a manager for them and she had moved to Colorado and they were looking for somebody. I thought, this might be fun, but then when, when my son was born in 1997, um, I, uh, I thought I need to do something where I can earn more money and stop working weekends and that kind of thing.
Alex Cortez: And good thing he did because after his son’s a seizure, nearly six years later, Tony would need that extra time, handling the fallout of his son’s viral infection.
Tony Oommen: Eventually, he was discharged from the, uh, the ICU spent another week in the hospital and he was down to 35 pounds.
He had to relearn how to walk. It was just, it was, it was a challenge. So we thought we just need to deal with these, these medical things to try to get the seizures under control. And then Ben will be back to normal. And then we realize that this is a, this is a profound brain injury that was caused by this virus.
His, uh, his cognitive deficits actually show up a lot like Autism, even though he doesn’t have autism because it wasn’t born with it. But if he was tested, you know, as though for Autism, he would test on the Autism spectrum. So. Some of those interventions were the same.
Alex Cortez: You might be thinking to yourself, I’ve heard of traumatic brain injuries affecting cognitive abilities, but a virus?
Tony Oommen: The reason you don’t see a lot of people walk around with this is because very frequently somebody that faces the same thing dies rather than, you know, comes away with a, with a brain injury.
Alex Cortez: Ben might be alive, but his life. Would completely change his brain functions cognitively at about a third grade level, making everyday life a challenge.
Tony Oommen: If you look at Ben, you can’t, you can’t tell. But one of the things that he has a challenge reading his facial expressions and emotions and social context and uh, may misunderstand, you know, might think somebody is angry when they’re not angry at all.
Um, so socially that can be a challenge, right? If he was in a job setting and you’d have to be in a very accommodative setting to be able to do that. What was very heartbreaking, you know, thinking through career, and we went through this for a number of years, is Ben always wanted to be a firefighter and was fascinated with anything having to do with fire rescue, and, and years later he still said, you know, I want to be a firefighter. And so we have these discussions and in the special ed programs would ask them to start thinking about what he wanted to do, and “well I want to be a firefighter,” and he did not have an awareness of his disability, he knew under, he’d heard the term special needs, but he just wasn’t, um, well, “why can’t I be a firefighter?” Right? You know? And, uh, and trying to explain that to him without putting a label or having him his own, like the fact that he’s somehow less than was hard. I mean, one is just, you know, it’s heartbreaking as a father to, you know, here’s something he wants to do and yet he can’t do it because of his, uh, his disability. And two just, he doesn’t have an awareness of the fact that he can’t, he can’t do that.
Alex Cortez: Ben’s career aspirations might have changed, but thankfully, unlike most families with special needs children, where 75 to 80% end up in divorce, his parents marital status stayed the same
Tony Oommen: Having our, our nuclear family stay together, I think that was a huge help. If Bev and I had not stayed together, and I mean, that would have, that would have been a huge blow to the Bence care and things that he needed. The fact that he could stay in one house and he still had two parents there was a, was a huge support benefit for him.
Alex Cortez: This has been good for Ben, but has it also been good for Tony’s marriage?
Tony Oommen: Was it easy on our marriage? No. It gives us different perspective on, on what, you know, where to put our energies and I would say having all this challenge took away was, um, focus on fighting over frivolous things right?
Alex Cortez: Yeah, that’s a silver lining, and the silver linings would not be limited to Ben’s parents.
Tony Oommen: Going back to it like our daughter Grace, she’s growing up now seeing this stuff happening to her older brother, seeing all of the resources and attention, you know, sucked away from the family into doing what we had to do there. And, um, she wasn’t neglected, but she didn’t have the same kind of, you know, attention that she would have had had this all this not happen. And when she’s coming through, you know, young adulthood, she’s 17 now and going into the preteen years and trying to figure out who she is and, you know, and you know, for a while this whole idea of having a family that’s different because we have this son with special needs and sometimes, you know, might do embarrassing things in public, was very difficult for her, but she’s, you know, come full circle as well. She, uh, she has a great deal of respect for her brother and the things that, what she has seen him go through and come out the other side of, I mean, she’ll even say, she’s like, Ben’s one of my favorite people in the world.
I think what she has, um, gotten was the strong sense that people matter and that you do whatever you have to do when somebody you love needs something and you move heaven and earth to make it happen, and I think, uh, she’s seen that she’s, you know, 17 going on 35 and just thinks about her future and all this, all this stuff. And she said, “well, Ben’s going to live with me when, when, when you guys are gone, right?” Meaning like just talking about it. But above, below, after we pass away. And she said, “well, what’s that gonna mean? If I get married,” I tend to say, “Grace, you know, just live your life. We’ll make plans for Ben. And uh, and you just, you just live your life and we’ll, we’ll see where things are, you know, three decades from now, but you don’t have to think about that now.” But it just shows that she cares about her brother and she wants to make sure that, that he has a good life in the, in the future.
Alex Cortez: And what an amazing young woman. What a father. And we hear over and over again in the interviews for this special father’s series that the greatest hope of a parent with a special needs child is that they outlive that child by just one day, even just one hour, because they don’t know if there will be anyone else on this earth who will care enough about their child when they’re gone.
When we come back, our special fathers series, here on our American stories.
Lee Habib: This is our American stories, and we continue with his powerful Special Father’s future on Tony Oommen, his bride Bev, his son Ben, and his daughter, Grace. Let’s continue the story.
Alex Cortez: As strange as it sounds, after Ben’s virus struck them at random, their family is stronger than ever. A new found strength that they would need for situations like this.
Tony Oommen: So Bev and Ben and Grace had gone to, um, her aunt’s house, and her aunt has a pond in the back of the house that’s for swimming. So they keep it clean and there’s, but it’s a pond. It’s not a swimming pool. Um. I was at her mom’s house, actually, I was, I had to give a presentation the next day, so it was preparing for it for, for work, so I wasn’t there. And so, you know, I get a call from Bev saying, Hey, we’re about to head back. And then I, I hear yell out Ben. So Ben was waiting near the, the edge of the pond as a seizure and slips into the water while he’s having a seizure. And so all I heard was, and she never hung up the phone. I alerted her scream, “Ben”, and then I just, I was listening, I just didn’t know what, what happened. So he went under though it though, the water and the pond was, um, I think it was about 15 feet deep and you can’t see to the bottom just like you can with a pool and Ben happened wearing a white shirt. Um, and so Bev saw the white shirt was able to go down and he’s still seizing at the bottom of this pond in the middle of a seizure. The positive to that is when you have a seizure, you don’t, your breaths are very shallow and he wasn’t taking in a lot of water. Um, she almost couldn’t get it. I mean, she had to go down, you know, try to pull them up, couldn’t pop to the surface of the water yelled for help. And the only people there, there are my, um, my daughter, Grace, and her mom and, and Grace didn’t know where Bev was cause she heard her yell and then she’d go back onto the water and didn’t see anything. So the way she’s described it, and she’s just, she was at the bottom of the pond trying to pull him up. And, uh, it, she was just, she said, God, you know, I’m, I’m not going to leave my son down here. Either he comes up with me or I’m down here with him.
He just popped out and he just got to the surface. She got him to the side and just then when he’s like his head, cleared the water, he comes out of the seizure and when that happens he takes, he took a really deep breath. If that had happened under the water, he would have died because it would have taken out a lung full of water. So he’s out. He’s conscious again. 911 is called and he’s taken to a local emergency room and they said, “we need to keep him because he was having trouble breathing and there’s this risk of they, it’s called secondary drowning, where the trauma to your lungs from taking in-” In this case it was like some pond water and some other junk. Um, your, “your lungs start to produce more fluid and you can drown in your own fluids.” So they had to transfer him to a hospital, the pediatric intensive care unit, and he was in that hospital for, I think another week or so before he was discharged.
So that’s incredibly traumatic for Bev, and it was incredibly traumatic for Grace, because by that time, you know, by the time Ben got out of the water and the Grace was there helping them to drag him out, um, it was traumatic for me from a distance. She finally got back on the phone and told me what happened, you know, and I was, I was still waiting there. This was, you know, several minutes had elapsed. It, it seemed like an eternity, but it wasn’t, it wasn’t, you know, that long of a period of time. And, um, I said that began, uh, began another journey, but that was recovery from that for Bev and for Grace was, uh, it was difficult. Bev had some posttraumatic stress out of that.
Alex Cortez: And here’s Tony on how he deals with all of this.
Tony Oommen: I think what’s hard is trying to make sense of it all. And that’s, that’s, I think that perhaps that is where, um, you know, we, we find comfort in our, in our faith. And so, I mean, I, as a Christian, I believe that, you know, we are um, we’re spirit beings, you know, that, um, you know, that they’re having a physical life experience. We’re created by God. And that, uh, ultimately where we’re going is a place where things are right. And, uh, and so I, a lot of people ask me over the years, like, you know. “Were you angry at God that this, uh, this happened?” It was, it wasn’t through anybody’s fault, you know, particularly it was just one of these, these difficult things that, that, that happens in life.
I never was angry at God because I, I see like where things are going. I have a belief that Ben’s going to be without impairment or seizures someday. Whether it’s in this life or the next, I don’t know. I hope it’s in this life. But having a hope that it will happen in eternity, you know, allows me to deal with what’s unfair right now.
We still do everything that we can to provide support and accommodation for Ben and, and our hope is something miraculous will happen, but every day, every week, every year where we deal with the day to day, with the ultimate hope of things being set right one day, maybe beyond this fiscal life, but without hope, I don’t know how people get through difficult things.
Alex Cortez: Difficult things such as trying to figure out how to control Ben seizures.
Tony Oommen: There was a 10 year period of time we really didn’t have seizure control at all, and then there was just moderate seizure control. It’s only been within the last year that we’ve had pretty decent seizure control.
Ben had a, a device implanted last fall called the vagal nerve simulator that over time has really worked and he has not had a seizure in the last seven months. And what we didn’t realize over that time of the previous time, just because we did where we had to do, was that we were constantly living in this state of hyper vigilance. Even we were asleep because for the a number of years when Ben first started having seizures and he had only had them when he was asleep, so we would jump at every little noise. We were just ready to move into fight or flight mode, you know, when any little stimulus was was out there, and that over a long period of time is not a good place to be.
Alex Cortez: I can only imagine. And here’s Tony’s closing advice.
Tony Oommen: It’s easy to get burned out. And, um, you know, if I had to look back over things I would have done differently. And things I’ve learned is, um, know, that burnout can happen and, uh, you can get stretched beyond your capacity by just pushing yourself to do things that just need to be done. And, uh, we need outlets. And so whatever that looks like to build in, you know, things for, for husband and wife, for them to get away together. Um, that was something that Bev and I didn’t do enough of because we just, there simply wasn’t anybody that can handle the medical issues that was going on with Ben. But you know, looking back, I would’ve, we would’ve, should’ve found more creative ways to do that. That would have helped our marriage more in the early years, just to, you know, to invest in each, in each other, in our marriage, and then invest in ourselves. So just taking time away, whether it’s even just a walk, you know? And, and when, when, when time allows, Bev and I are both pretty driven people and, uh, Bev also is just, I mean, she’s just, she’s just a tornado. I mean, she’ll just, she’ll do, especially when it comes to her kids do whatever has to be done. I mean, that incident that I mentioned at the pond is evidence of that she would’ve given her life for her son if that’s what it took. Um, but burnout can happen if you push yourself too hard. And so that is a, a big thing to watch for, especially when there, there are, there are challenges, um, and you know, have people in your life that could recognize when that before it comes up, cause I don’t, I don’t recognize when I’m getting burned out, when I’m in the middle of it. Bev does. I can recognize when it’s happening to her or friends and family that are around us can, that, you know, that, if we give them permission to speak into our lives in that way and ask for it, that can really protect against, uh, you know, getting off balance
Lee Habib: and great work on that. Alex, and this special father’s series is brought to us by the Special Fathers Network, which matches up longtime fathers with special needs children, with brand new ones for fellowship and mutual counseling on their shared journey. And Tony Oommen, thank you for giving that story to our audience. So many families go through what you’re going through and what a way to reach out to them and connect them. Your beautiful bride, Bev, that’s that statistic is staggering. 75 to 80% of the couples that have special needs kids end in divorce. Staggering. Also to Grace and Ben, this is our American stories, the human story.