A Genetic Condition & The Great Physician

Former Secret Service Officer, a wife, mom, and Founder and President of the Hive and Hope Foundation

These are Elizabeth's favorite scriptures...

Elizabeth shared her story on Truth, Talk & Testimonies

Elizabeth's testimony is also on VictoryEmbraced: Truth, Talk & Testimonies podcast platforms

Before you had your precious son, Becket, your first child, you had a few challenging pregnancies. Could you share about these?

Absolutely. My husband and I got married in October 2020, and we felt the Lord tell us to start trying to grow our family in the summer of 2021, so we obeyed the Lord and got pregnant almost immediately, which was wonderful and such a blessing, and then, unfortunately, we lost that baby early on. Nobody had ever spoken to me about miscarriages or what to expect or anything, so quite honestly, I didn’t even know I was going through a miscarriage until it was over. I went to the OBGYN, and she confirmed that I had a miscarriage, and it was heartbreaking. After I got cleared by the doctors to try again, we prayed about it, and we felt peace to try again. After a few months, we got pregnant with triplets. That was a giant shock, but multiples run in my family. We were ecstatic and said, “Oh my gosh, the Lord is blessing us with a double portion." We made it almost until the second trimester, and I began cramping, and I said, “Well, there are three of them in there, so it could be normal that I’m feeling this way.” Then, I passed one of the babies at home, and immediately, I told my husband we had to go to the emergency room. Thankfully, the emergency room was less than five minutes from our house, but unfortunately, that’s where I passed my babies, and that was very hard because I knew what was happening at that point. The experience felt like a stolen promise, and it was a devastating time for us both. I had to take off of work to mourn the losses of my four babies. After losing our four kids, I would rather not try again for a while because I was afraid, traumatized, upset, and sorrowful. However, after much praying, we got cleared by the doctors. We waited a few months, tried, and then got pregnant with our son Becket. Becket was born in October 2022, and it was such a blessed pregnancy and easy—the only thing that wasn’t easy was just being paranoid and battling anxiety because of my previous losses, so of course, I was terrified. Still, I had to fight a lot of fear during that time, and the Lord spoke to me during pregnancy and gave me worship songs and scriptures and had random people from the church that I didn’t even know what happened previously come up to me and say, “This child shall live and not die.” They prophesied life over my son. I had Becket, and then about when he was five weeks old, on Thanksgiving Day of 2022, we started to notice these episodes—we didn’t know what happened or what could have caused it. Still, he began to shake uncontrollably; his eyes were fluttering, his extremities were tensing up and then shaking, and my husband and I were so scared. We had never seen anything like that before as first-time parents, so we took him to the emergency room that night.

Did they give any indication of what was going on with Becket? Did they have any idea at that point?

Unfortunately, no. The episode stopped, and Becket’s vitals looked fine, so the emergency room doctor checked him as much as he could and told us to bring him back if it happened again. They had no answers, so this began the long journey of my husband and me researching, reading, trying to see what was going on, and watching YouTube videos to try to link what happened to our son to what information could be out, to what the cause could have been.

You shared, too, that you went through postpartum depression. When did that come into play? Was that with your pregnancy with Becket?

My postpartum happened after I gave birth to Becket. I was a brand new mother and very sleep-deprived; the challenges that came with nursing and being unfamiliar with my baby started postpartum, and then Becket’s episodes drove it home and were a kind of the nail in the coffin for postpartum for me. I didn’t know what was going on with my baby, and I had no idea how to help him—he was suffering, and I had no idea what to do. 

I know that postpartum could present itself with different symptoms for different women. What were your symptoms?

I went through a lot of rage. I think that was my number one symptom, and also I had a lot of anxiety. Furthermore, I didn’t eat very much, and then other days, I overate. It was hard for me to go outside, even though I knew I needed to go outside, and I was not pleasant to be around. There’s a difference when you’re tired and sleep-deprived and all the usual things that come with having a brand new baby, but then there’s the other side where your heart is hard, and you treat people differently than you usually would. I was particularly nasty to my husband, father, and stepmother-in-law because they came from Florida to help me, and I didn’t treat them very well.

How did you become Becket’s advocate? And how did the Holy Spirit help lead and guide you and your husband as you noticed more symptoms with Becket? 

So, after the emergency room visit, we noticed he had more episodes each day. It became a daily thing and then multiple times per day, and the symptoms presented about the same as before. There was eye fluttering and tensing up of his extremities, and then there were times when it sounded like he wasn’t breathing and struggled to breathe. We took him to his former pediatrician and showed her the logs we’d written, and we had a shared note in our iPhone where we wrote down the time of the episode, the characteristics, how long they lasted, and the frequency. We also took some pictures and videos to show her, and she looked at it and said, “Oh, it looks like it might be reflux—a severe form of reflux and maybe Sandifer syndrome.” We didn’t know what Sandifer’s was, so we looked it up, and it was just like she said: it’s a symptom of a reflex where it looks like a baby is having a seizure, but it occurs after they feed. So we thought that looked like what Becket was going through, but something inside us, the Holy Spirit, told us there was more going on and wrong, and we needed to investigate it more. During this time, of course, we sought the Lord and prayed, and at this point, we tried to figure out what was wrong with our son. At times, it was difficult to hear God, even though He was constantly speaking to us—it was hard for us to hear due to our anxieties. We kept advocating for Becket. After visiting the pediatrician initially, I would send her messages on this app called My Chart and give her updates at least once a week. I was that mom because I wanted to make sure they had all the information they needed to try to help my son. Eventually, I went to the pediatrician again, and he had an episode in front of her in real-time. She looked at me and said, “This looks like it could be a seizure.” Previously, though, she was saying it could be colic; it could be the period of purple crying, which purple stands for something, but I forget what it stands for. Still, until this point, she would say other things that could be so; after she saw the episode happen, she referred us to a neurologist. About a week and a half later, we got in to see the neurologist. Still, we didn’t know that it was via Tella Health at an off-site location, so when we went into the doctor’s office and went to the back, this computer rolled in front of us, and the neurologist was through the screen, and he asked us if we could show him a video of the episodes. We put our phone up to the screen and showed him one video, and within 10 seconds, the neurologist said, “Nope, it’s not seizures—it’s reflux.” My husband and I said, “Are you sure because you only looked at it for 10 seconds?” Something was still not sitting right with us. The physician’s assistant took him at his word, and the appointment ended. At that point, my husband and I knew we needed to get an EEG done to get further information that could tell if Becket was having seizures. We had to fight and advocate with the physician's assistant for a few minutes, but she finally said okay and referred us to have an EEG done. We felt we had a victory in getting what we asked for, and a few days later, we got admitted. Becket had the EEG, but no episodes appeared within the two hours during the test. The doctors said, “Hey, he’s not having seizures—he’s fine, so continue the reflex medicines.” My husband and I looked at each other again, and we asked the doctors, “Are you sure because he didn’t even have an episode—How can you know for sure?” We respect what the doctors do and their expertise, but we are the experts of our child, and we knew that something was still wrong, and the doctor kept saying he was okay. Nick and I took our sweet son back home, and the episodes continued and worsened. I did everything I could and went on a total elimination diet or TED. I eliminated a wide range of foods, including milk, dairy, and eggs, to investigate potential effects on my son’s health, which further complicated my breastfeeding journey, as I believed my son’s milk was causing him harm. We also put him on a formula that didn’t work—he was on a bunch of reflux medications that didn’t work, and he eventually went on a specialized amino acid-based formula that also didn’t work. We were so frustrated. It was around five months of constantly going back and forth, always, My Charting his pediatricians and specialists, everybody—and I was also called a paranoid first-time mom by one of the doctors, and it made me question if I was paranoid, but the Holy Spirit kept me strong. Both Nick and I knew there was something wrong. Eventually, I went to the specialist and said, “Hey, I’m taking my son to another hospital. I don’t trust you guys because you haven’t listened to us. I’m advocating for my son and know something is very wrong." At that time, I took him to a new pediatrician in another state who is still Becket’s current pediatrician. He had an episode in front of him, and the pediatrician looked at me and said, “What are you doing? You need to take him to the emergency room right now! This is a seizure.” God used my son’s current pediatrician to confirm that everything that we were feeling, everything that we were sensing, was correct. After his current pediatrician told us this, we took him to the emergency room in another state, and they admitted him and ran a 24-hour EEG, confirming that he indeed was having seizures. With this news, it felt like the floor beneath us just broke. We knew there was something more profound wrong, but to have it confirmed by a doctor was excruciating and very upsetting, so we both cried a lot and told the neurologist that he was going to be doing a genetic swab test in our mouth to confirm and help figure out a potential cause. Hence, they did a genetic test on Becket first, and we had the results back within a week and had a phone call. The neurologist said, “Your son has a rare genetic condition that is causing his seizures called Tuberous Sclerosis Complex, or TSC, which is a condition with no cure, and it produces non-cancerous tumors to grow in various parts of your body—in your eyes, brain, kidneys, lungs, and heart." A lot of the time, TSC is also the leading genetic condition for autism, so once we heard that Becket had TSC, the neurologist asked us if they could swab me and Nick to ensure that we didn’t have it. When we got the tests back, we discovered that Nick has TSC. It’s interesting because TSC is such a broad spectrum, and Nick has never had a seizure and presents no symptoms. In contrast, Becket has uncontrollable seizures despite several anti-epileptic drugs that he’s on.

What happened at the end of 2023 that took a turn for the worse?

After doctors diagnosed Becket in May 2023, he received the necessary treatment, assistance, and therapies, and things looked good. In September, we decided to go to Minnesota to see his godparents and then, right after, go to Texas to see my mother-in-law to spend time with family. They all loved seeing him, and he had a great time being on a boat for the first time. All of a sudden, his seizures got so bad that he would have about 100 seizures per day, and although they were quick, they were frequent. It got to the point where his lips turned blue, and he stopped breathing with almost every seizure, even for a little so even though the seizures were short, they occurred so frequently that each time he stopped breathing, it was horrible for him. Nick and I laid hands on him and prayed; his godparents are strong Christians, and we were in an excellent household full of Christians who laid hands on him and worshiped around him, bringing so much peace. So, after these seizures kept occurring, we reached out to his neurologist back home via My Chart. We told her what was going on and jumped on phone calls and told them they were so bad and that Becket, Nick, and I weren’t getting any sleep because every time he was awake, he was having a seizure. After sharing this with the neurologist, she said, “You guys are going to Houston, so I know the neurosurgeon there. Maybe neurosurgery is your next step?” Becket was on a bunch of medication and a rescue medication that was strong and was supposed to stop his seizures once they met a particular criterion, but it didn’t stop them at all. We responded that we were 100% on board to talk about surgery. When we got to Houston, it was by God’s grace that we got to have an appointment with this neurosurgeon because, typically, it takes months to get on the books to meet with him. We met him within a few days of being in Houston, and he sat us down and gave us our options and said we needed to do a presurgical workup. He explained that the presurgical workup involved X, Y, and Z, and that we would likely need a two-week stay. They sent us home that day, and then Nick returned to West Virginia for work, while I chose to stay with my mother-in-law and Becket to ensure his well-being and allow for a quick return to the hospital if necessary. A lot was going on at that time. One day, while we were watching TV, Becket started to have a terrible seizure, and it lasted longer than usual. He wasn’t breathing, and the color of his face was changing. I looked at my mother-in-law and said, “We need to go to the emergency room right now!” She took us to Texas Children’s Hospital to the emergency room, and what was supposed to be a couple of days stay ended up being an almost three-month stay with a couple of emergency brain surgeries. I called Nick and told him everything, and they got us a room, and we went up to the epilepsy monitoring unit at Texas Children’s Hospital. They began the presurgical workup, which took a few weeks, and during that time, it was very lonely because Nick was back home for work—he didn’t have generous paid time off at the time and had no option to work from home. His job knew what was happening, so they tried to accommodate him as much as possible, but he still couldn’t stay with us, so it was me, the Lord, and Becket. It was isolating. After he got the presurgical workup done, he had his first brain surgery when he turned one-year-old. Nick and I were so hopeful. The whole day, Becket was in surgery, and I was a complete mess, but I tried to keep my mind busy. I walked downtown, drank much coffee, prayed, and wrote in. Then, about 8-10 hours later, I received a call that Becket was done, so I ran to the hospital, and Nick met me there after arriving at the airport. We saw Becket in the recovery room, and as soon as we walked into his room, he had a seizure. Nick and I couldn’t believe it; we thought it was a nightmare because we were so hopeful that he would be seizure-free after his surgery. The seizure was so bad that we needed to be transferred to the ICU, and as he was transferred to the ICU, his oxygen and heart rate tanked. There were several nurses there who were trying to bag him and ensure his heart rate and oxygen came back up—there were probably close to 15-20 people in the ICU room, trying to get him to breathe, so Nick and I almost lost him, and it was a tough time for us, but the doctors and nurses there are phenomenal, and they got him back to where he needed to be, but it was during that time when the neurosurgeon came up and said, “I’m so sorry—sometimes this happens. We’re going to try again; we’re going to do all the presurgical workups again, draw the labs, the MRIs, and all the scans to ensure that we can get this because something went wrong and we didn’t get what we needed to get.” He took responsibility and was humble. Dr. Howard Weiner is incredible. Nick and I were mad, upset, and scared, but God had us there for a reason, and regardless of what the journey looked like—we knew it would help many more people than our sweet son, so we stayed steadfast and partnered with Dr. Weiner and trusted it would work out. During this time, a lot of the nurses would come in to try to bag Becket with oxygen—his seizures were short but severe to the point where his oxygen would tank quickly, but then come up quickly. They would rush in to bag him because the monitor lagged, and they were bagging him when he was completely fine, so I advocated for him and said, “Hey, I understand what you’re doing. The monitors beeped, but he’s okay now.” I told the nurses this several times and let them know that I was watching him like a hawk and that I would let them know if things didn’t look good and that I understood that they were trained to do what they were doing, but as a person constantly watching him, he’s okay. That was a partnership that I needed to establish with our medical team. Fast forward, Becket got his new presurgical workup done, and then he had a second brain surgery about three weeks after his first. Nick and I were nervous wrecks—he just turned one in November. We prayed to God and told Him we trusted Him 100% with our whole hearts. We’re not going to lean on our understanding or what the doctors say, even though God uses medicine and doctors, and it’s an incredible blessing. However, we understand that His Word is final; His Word states that we are healed by His stripes. We kept declaring scripture over him and worshiping. We had other people from other churches that I didn’t even know come by and pray over us, visitors who gave us food, gift cards, and coffee. I lived off of coffee—I still do, but especially back then. Becket had his second brain surgery, and when he came out, he was babbling and laughing and being his silly self and wanted to eat, which was incredible. We were excited. Becket was seizure free for about six months, and then, unfortunately, his seizures came back last Easter. It has been an incredible journey with our sweet Becket. His seizures aren’t as bad as they were before surgery, which is such a blessing that he’s stable and still on medication, but he’s advancing so much. He’s almost two and a half, about to walk, babbling a lot, and has a few words under his belt, and he’s such a fantastic kid. We are still on this journey but strongly believe in the Lord. The Lord was and is so close to us; we have unshakable hope in Him.

Elizabeth Brown is the Founder and President of the Hive and Hope Foundation, whose mission is to improve the quality of life and bring hope to children with complex special needs and their families affected by critical illnesses, genetic conditions, and epilepsy.