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. 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’d taken the kids to go drive somewhere to buy my wife flowers for Valentine’s day. We were pulling back into our house, and my son, who is six, was still in a car seat. He had fallen asleep and I’m taking him out of his car seat, and he goes into having a seizure. 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. I 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 fiancé Matt, and he said, “You need to take him to the hospital. He got rushed to the hospital. 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 where 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 virus to his brain.
Alex Cortez: You’ve been listening to Tony Oommen, 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. In fact, when my son was born, I was managing a kosher catering company in Cincinnati.
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 company I was friends with. Their daughter was manager for them, she had moved to Colorado, and they were looking for somebody. I thought this might be fun. But then when my son was born in 1997, 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 ICU and spent another week in the hospital. He was down to 35 pounds. He had to relearn how to walk. It was just a challenge. So we thought we just need to deal with 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 profound brain injury that was caused by this virus.
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 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 comes away 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 tell. But one of the things that he has a challenge reading is facial expressions and emotions and social context. And he may misunderstand. He might think somebody is angry when they’re not angry at all. So socially that can be a challenge, if he was in a job setting, and he’d have to be in a very accommodative setting to be able to do that.
What was very heartbreaking, thinking through career, and we went through this for a number of years, is Ben always wanted to be a firefighter, and he was fascinated with anything having to do with fire rescue. And years later he still said, “I want to be a firefighter.” And so we have these discussions. And in the special ed programs they would ask them to start thinking about what he wanted to do, and it was, “Well, I want to be a firefighter.”
He did not have an awareness of his disability. He’d heard the term ‘special needs,’ but he just said, “Why can’t I be a firefighter?” And trying to explain that to him without putting a label, or having him own the fact that he’s somehow less than, was hard. I mean, one, it’s heartbreaking as a father to know, here’s something he wants to do, and yet he can’t do it because of his disability. And two, he just doesn’t have an awareness of the fact that 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 nuclear family stay together, I think that was a huge help. If Bev and I had not stayed together, that would have been a huge blow to the Ben’s care and things that he needed. The fact that he could stay in one house and he still had two parents there 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 where to put our energies, and I would say having all this challenge took away any focus on fighting over frivolous things.
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 our daughter Grace, she’s growing up now seeing this stuff happening to her older brother, seeing all of the resources and attention sucked away from the family into doing what we had to do there. She wasn’t neglected, but she didn’t have the same kind of attention she would have had had this all this not happened.
She’s 17 now. But going into the preteen years and trying to figure out who she is, for a while this whole idea of having a family that’s different, because we have this son with special needs who sometimes might do embarrassing things in public was very difficult for her. But she’s come full circle as well. She has a great deal of respect for her brother and the things she has seen him go through and come out the other side of. I mean, she’ll even say, “Ben’s one of my favorite people in the world.”
I think what she has gotten was the strong sense that people matter and that you do whatever you have to do when somebody you love needs something. You move heaven and earth to make it happen. She’s now 17 going on 35, and when she thinks about her future, she says, “Well, Ben’s going to live with me when you guys are gone, right?” And when she says, “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 we’ll see where things are 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 he has a good life 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.
As strange as it sounds, after Ben’s virus struck them at random, their family is stronger than ever, with a newfound strength they would need for situations like this.
Tony Oommen: So Bev and Ben and Grace had gone to 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, but it’s a pond. It’s not a swimming pool. I had to give a presentation the next day, and I was at here mom’s house preparing it for work. So I wasn’t there. I get a call from Bev saying, “Hey, we’re about to head back.” And then I hear her yell out, “Ben!” Ben was waiting near the edge of the pond, has a seizure and slips into the water while he’s having a seizure. She never hung up the phone, so then I was just listening, but I didn’t know what happened.
He went under the water, and the pond was I think about 15 feet deep, and you can’t see to the bottom like you can with a pool. Ben happened to be wearing a white shirt, so Bev saw the white shirt, and was able to go down. He was still seizing at the bottom of this pond. The positive to that is when you have a seizure, your breaths are very shallow, and he wasn’t taking in a lot of water.
She almost couldn’t get him. I mean, she had to go down and try to pull him up, but she couldn’t. She popped to the surface of the water to yell for help. And the only people there were my daughter, Grace, and her mom. Grace didn’t know where Bev was, because she heard her yell, and then Bev would go back onto the water. She was at the bottom of the pond trying to pull Ben up. And she said, “God, you know I’m not going to leave my son down here. Either he comes up with me, or I’m down here with him.”
Then he just popped out and went to the surface. She got him to the side, and just then when his head cleared the water, he comes out of the seizure. And when that happened, he took a really deep breath. If that had happened under the water, he would have died, because he would have taken in 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 what’s called secondary drowning. That’s where the trauma to his lungs from taking in water and some other junk from the pond could cause his lungs to start producing more fluid, and he could drown in his own fluids. So they had to transfer him to a hospital, to the pediatric intensive care unit, and he was in that hospital for I think another week or so before he was discharged.
So that was incredibly traumatic for Bev, and it was incredibly traumatic for Grace, because by the time Ben got out of the water, Grace was there helping to drag him out. It was traumatic for me from a distance. It seemed liked an eternity, but she finally got back on the phone and told me what happened. That began another journey, and recovery from that for Bev and for Grace was difficult. Bev has had some post traumatic stress because 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. I think that perhaps that is where we find comfort in our faith. As a Christian, I believe we’re spirit beings, and we’re having a physical life experience. We’re created by God, and ultimately where we’re going is a place where things are right.
A lot of people ask me over the years, “Were you angry at God that this happened?” It wasn’t through anybody’s fault particularly—it was just one of these difficult things that happens in life. I never was angry at God, because I see where things are going. I have a belief that Ben’s going to be without impairment or seizures some day. 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 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 our hope is something miraculous will happen. But every day, every week, every year, we deal with the day to day, with the ultimate hope of things being set right one day. It may be beyond this physical 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’s seizures.
Tony Oommen: There was a ten 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 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 the previous time—because we did what we had to do—was that we were constantly living in this state of hyper vigilance, even we were asleep. Because for a number of years when Ben first started having seizures, 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 out there. And over a long period of time, that 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, you know, if I had to look back over things I would have done differently, I’ve learned that burnout can happen, and you can get stretched beyond your capacity by pushing yourself to do things that just need to be done. And we need outlets. So whatever that looks like, build in things for the husband and wife, for them to get away together.
That was something Bev and I didn’t do enough of, because there simply wasn’t anybody that could handle the medical issues that were going on with Ben. But looking back, we should’ve found more creative ways to do that. That would have helped our marriage more in the early years, just to invest in each other, in our marriage, and then invest in ourselves. Just taking time away, whether it’s even just a walk, when time allows.
And Bev and I are both pretty driven people. Bev is just a tornado. Especially when it comes to her kids, she’ll do whatever has to be done. That incident that I mentioned at the pond is evidence that she would have given her life for her son, if that’s what it took.
But burnout can happen if you push yourself too hard. And so that is a big thing to watch for, especially when there are challenges. You need to have people in your life that can recognize that before it comes up. Because 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. We need friends and family around us that we give permission to speak into our lives in that way. That can really protect against getting off balance
Lee Habib: 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. Thank you to your beautiful bride Bev. That statistic is staggering, that 75 to 80% of the couples that have special needs kids end in divorce. Thank you also to Grace and Ben. This is Our American Stories, the human story.