With Nicolaides-Baraitser Syndrome, Counting The Seizures Never Stops
For families with medically complex children, each day is a story of survival. Parents' lives are entwined with the medical system that keeps their children alive, and yet go unrecognized by that system when it comes to identifying and treating the ongoing effects of trauma and uncertainty. This Changes Everything goes inside the lives of six families to look at the prevalence of PTSD among caregivers, and consider the steep costs we demand of those fighting day in, day out for their families.
Faria Khan lives in Queens, New York, with her husband, Asif. When I spoke with Faria she was expecting her second child, Muhammad, who has since arrived safely to join their family. Faria’s older son, Iman, is 4, and became well-known after his family was featured by Humans of New York in September. He was born with a syndrome known as Nicolaides-Baraitser, which is caused by a genetic mutation. As a result he has developmental delay and epilepsy. She spoke about the large traumas of living through Iman’s seizures as well as the smaller daily traumas of living with a child who cannot speak with you. This is her story, as told to Hillary Savoie.
Iman was born on Feb. 27, 2014. The doctors told us he was completely healthy. However, very early on, under two months, I had a feeling. I knew in my heart something was going on. Iman was very slow at meeting all of his milestones. When he was 9 months old, he still was not sitting up. He had very low muscle tone, I used to call it floppy. He had a lot of trouble breastfeeding, because his muscles in his mouth are very weak. I resigned from my job around that time. I felt like it was a full-time job to advocate for my child. I was a special education teacher myself, so I resigned so I could be home with my classroom of one. That’s what I always say, he is my classroom of one.
In September 2016, we got the Nicolaides-Baraitser diagnosis. We saw a geneticist, and she did some sequencing called whole exome sequencing. The testing they did found a mutation in the SMARCA2 gene and that’s the diagnosis that he has: Nicolaides-Baraitser. It's very rare, less than 100 [cases] in the world. It is a mutation of a gene. It's just a random mutation that can happen to anyone. It affects his ability to speak as well as his cognitive ability. And besides that, they're generally happy children with a positive demeanor.
I'm a person who lets out emotion very easily. But I didn't cry until like 11 p.m. that night.
When he was diagnosed, I didn't know how to feel. We didn't cry, we talked, we listened. And we laughed. We joked. Iman was into twerking. It's hilarious and all I remember is laughing about his twerking at the geneticists office that day that we were laughing. He was full on butt shaking, hands on the floor. We were like, this kid is so funny. And I remember at the office. And I'm a person who lets out emotion very easily. But I didn't cry until like 11 p.m. that night. It was sort of like erosion, like the Colorado River made the Grand Canyon, like slowly chipping away at it. I feel like that's how my tears came for this diagnosis. Just like in the form of erosion slowly, slowly, slowly. It's not like a dam burst open. You just cry and then you stop. And you see a twerk and the laugh. And then you cry again. It's a slow erosion.
Iman had his first seizure around 18 months. He was sitting on the sofa. I was sitting on floor, by his feet, and he was just kicking, playfully. I remember his kicks stopped and I turned around. He started to tilt his head back, and he was shaking. I’d never seen a seizure before. I picked him up kind of like, you know how in the cartoons you see adults pick up child with a stinky diaper and they keep them far away, they keep their arms like straight? I was holding him straight out like that because, I don’t know what to do.
It was a very short period, 30 seconds. He shook and shook and then went limp in my arms. I was still holding him like he had a stinky diaper on. I just watched his head like plop to the side. In that moment I thought I was holding my dead child. I thought he died, in my arms, right there. I remember the feeling of my heart falling into my toes, right into my toes and possibly slipping out of there.
I was still holding him like that when my husband came in and asked what happened. And I was like, “I don’t know, call 911.”
Now he has had nine [seizures]. His last one was July 2017. A month and a half ago was our one-year anniversary without seizures. He used to go [without a seizure] every two months, three months, and then we were able to go four months without one. We have found sort of like a regimen that has been working. He is on two different heavy medications. They are very strong, so it dulls him down. So I have a little zombie child.
If he doesn’t get that medication he can have withdrawal symptoms and go into seizures from not having the medication. So that gives me a lot of stress, because I have to cut his pills. At first, I had to cut it in quarters. Cutting a pill in half is bad enough, and making sure you have just the right half, but then cutting a pill in quarters, oh my goodness. It is really stressful, because you know that if you give too little a withdrawal seizure could happen and that is on you. It’s just so much pressure.
The seizures have traumatized me. He has dream-to-wake seizures, so seven out of nine of them have been in bed. He is just sleeping peacefully, and then all of a sudden you hear a gasp and then he starts shaking. That gasp is what I anticipate and wait for because all of them have had that gasp before it starts. And then something is just taking over their body. And, at that moment, during seizures, you cannot do anything for them, all you can do is put them on their left side. And just wait it out.
To just watch the seizures and know that, when this is over, there is a chance that your child is dead. There’s a chance air flow did not go to the brain and he will have brain damage in a serious way. Or, at least, he's gone through one of the most taxing things that can happen to a human body.
The seizures have gotten longer and longer. The first one was 30 seconds, and they have gotten progressively worse. In my nightstand drawer: I have the emergency medication, thermometers, a timer, ready for me to just press on and off, and I am constantly going and just checking the timer, to see if the batteries are OK. I just want to be as prepared as possible, then maybe we can somehow figure out how to stop them or how to be better about them.
I have calculated the number of minutes all together of all the seizures and it is around 20 minutes. And that 20 minutes is why [all] I do now is fear: When’s the next one coming? I remember all the dates of all the seizures, exactly the dates, where we were. And it is because those were moments that could have been death days for Iman. They could have been days where I would have had to say goodbye, but I didn’t. I got the chance to keep him. I got the chance to love him another day.
That sound that he makes during seizures has turned into other sounds I hear: like a tea kettle whistling or even notifications on my phone if I am feeling a certain way.
So those dates are etched my mind, but they are etched in my mind in a — and this is where the trauma and the faith combine — because the trauma is the fact that this was a difficult thing to see, but there’s the faith that he didn’t pass away and I had another chance with him. So [on month anniversaries] I pray two extra, special prayers. And I make sure to take time out in that day to reflect. I count days. And I am constantly thinking, “Wow, it is eight months, 13 days, and 2 hours." And I am like that because I am just thankful for every moment that I have with him that hasn’t turned into saying goodbye.
Now my trauma, that sound that he makes during seizures has turned into other sounds I hear: like a tea kettle whistling or even notifications on my phone if I am feeling a certain way. Or certain sounds at the airport. My first panic attack was at the airport and a man was complaining about his suitcase. I was holding on to Iman and the man just raised his volume a little bit and he scratched his suitcase on the floor a little bit and that sound triggered something inside of me. I couldn’t breathe. I didn’t know why I wasn’t able to breathe. I’m a New Yorker, and I am the kind of person who can overlook a lot of craziness, nothing really bothers me. So I was really shocked, and temper tantrums, at the airport? I mean, come on, that’s normal. But for some reason in that moment I was sitting in the airport and that suitcase scratch and the way that man spoke had me not being able to breathe. Since then I have been having panic attacks.
So now, if somebody has the kettle on or other things, or beeps, or with the Humans Of New York feature, my phone was, in a beautiful way, getting overwhelmed and inundated with love and messages and whatnot. I had to turn my phone off get away and slowly come back to it, because all of these things can be triggers for me to go back to the fear. And they have nothing to do with Iman, the tea kettle has nothing to do with Iman or the airport, but I just start to get into this place of panic and my heart starts to constrict, I feel like I can’t breathe.
I'm struggling with it. But what I do for my trauma is I have I am seeing a therapist. I was diagnosed with PTSD, by my doctor, because of the trauma of watching Iman seize. [My doctor] was able to just see how many times I came to her office and couldn't leave without crying. Even if it was just a cough, I couldn't describe my symptoms without falling apart every time. She started asking questions like, “How are you feeling?” And she would listen to me. And she would ask me “When was the last seizure?” That's where she would start because she knew that then she would be able to sort of gauge where I was at that moment. If it was a long time [since the last seizure], so she knew that I was in better spirits. If it was recent, she knew to be more sensitive.
She knew there was a connection between my physical health and my son's health. And that was nothing but motherhood and the toll that it takes, like the connection that a mother and child has. It's just not just a job. She knew that it was part of my mental health journey. And she diagnosed me with it. And she asked, “Have you ever heard of post traumatic stress?” I said, “Yes, like, what soldiers get when they come back?” That's literally what I said. And she said, “Yes, and you know why they get that?” And then she told me why. And I was like, OK, and she's like, “So you can you think of how that relates to you?” And I'm like, “I guess I see Iman like that, you know, and such a, you know, and like, soldiers are watching people die, I'm watching my son maybe die.“
I live every day in fear of that seizure coming. He still sleeps in the bed with me. I still check him multiple times at night. I don’t sleep regularly. I am always concerned with every single little sound in the house.
But I always say to people that I think the most traumatic thing, the thing that chips away at me the most, because I see it on daily basis, is the lack of ability to communicate with Iman. It has been 14 months since the last seizure, so I have been able to let go a little bit of my anxiety on that, and, and where it hurts the most, I think, is the daily struggle. And the daily struggle is not being able to talk to Iman.
I'm just talking to myself. Like, literally all day long. For three years, I have just talked to a human that does not talk back to me.
Iman has had seven words in his lifetime. At seven different times he has had seven words, not seven all together. One word at a time. And [every time] I’m like OK, we’re going to have some communication with our child. And then it just goes away.
So I'll say good morning to him. We have a routine of a prayer that I say, and he just sort of looks at me blankly. And then we go and brush our teeth. When I'm brushing his teeth, I'm singing a song or whatever, and I might get a smile. I might not get a smile. I might get a look in my eye. I might not. I might be able to reach the molars. And those are things that like I pretend and have pretend conversations. “Oh, you're gonna let me brush you back the back of your teeth. Awesome! Baby, that so great! I'm so proud of you. This is what good boys do. That's right. That's what we do. We, we brush our teeth, and we keep them clean. Oh, my goodness, Iman, you're growing so big.”
And I'm just talking to myself. Like, literally all day long. For three years, I have just talked to a human that does not talk back to me. And it's nuts. I just I literally talk all day long to a child that does not talk to me. Just in hopes that maybe even if he cannot ever talk to me, at least maybe he understands me and knows that someone cares to talk to him. Just for him to know that he's worthy. Even if he can't talk that doesn't mean somebody doesn't want to communicate with him, that somebody doesn't have the hopes of communicating with him. There's his Mama. She's ready to talk whenever he is. And I'll be waiting.
This interview has been edited for length and clarity.
Photography: Kisha Bari
If you or someone you know is experiencing symptoms of PTSD or a related condition, contact the National Alliance On Mental Illness HelpLine at 1-800-950-NAMI (6264), Monday through Friday, 10 a.m. to 6 p.m. If you are experiencing postpartum depression or anxiety, you can also contact the Postpartum Health Alliance warmline at (888) 724-7240 or Postpartum Support International at (800) 944-4773. If you are thinking of harming yourself or your baby, get help right away by calling the National Suicide Prevention Lifeline at 1-800-273-8255, or dialing 911. For more resources, you can visit Postpartum Support International.