Our twin boys came into our lives in March of 2016. They were only 18 months at the time. Even though we knew little of their history for their first year and a half, we did know that these two sweet boys needed a loving home. So that is exactly what we did, we brought them home with us and we became a family. Because of my background in the medical field and my experiences, I believed that some delays might be expected but we took on the task of parenthood regardless of the unknown and little information provided.

As an Occupational Therapist with experience in the newborn to 3-year-old program, I knew of developmental delays and issues that could occur. I was equipped with the ability to carefully watch for signs and behaviors that needed attention. With Matthew, I first saw he had issues eating solid foods. He was thrusting his tongue forward while eating and it was accompanied by digestive issues. Another sign, I quickly picked up on that something wasn’t quite right, was seeing him take steps that were uncertain and uncoordinated. Due to Matthew falling a lot and tripping frequently, he mostly resorted to crawling everywhere. Then his left eye began turning inwards. There were so many issues that Matthew was afflicted with, but he was still my curious, active and bright son. I loved seeing him explore and investigate the things around him, but something was off with him. Once more, another symptom became prevalent and needed attention.

A month or two after our sons came to live with us, we started noticing these staring spells Matthew would have, lasting usually no more than 45 seconds. We discussed the symptoms we were seeing with his pediatrician and were told, “He is young, it is most likely inattention.” I was left with the advice to “keep an eye on him.” While I did my best to care for my boys, in January of 2017, Matthew ended up in the emergency room. We rushed him to our local hospital here in Alamogordo, NM after he had multiple staring spells and then went limp. The PA stated that he was postictal and referred him to a neurology clinic in Albuquerque, NM which is not only 3.5 hours away but it would require us to wait another 2-3 months for an appointment after the referral came in. There was nothing we could do but to anxiously await the answers and solutions for our sweet boy. My husband and I were finally told that the cause of the staring episodes was most likely due to partial complex epilepsy. They stated that these types of episodes do not show up on EEGs which, of course, did not in his case. It was frustrating to wait for the appointments, to not have tests to show the problem, and to top it off, the medication prescribed to treat Matthew was not working. He was placed on the medication for three months, yet he was still exhibiting staring spells. At his next check-up, when I tried to advocate for my son that this medication was not working, their solution was to increase the medication and wait another six months before even seeing Matthew again. So, we waited and at the following appointment, I again informed the medical team that the medicines were not working and asked for more tests such as an MRI. However, we were told that this test would not be done until Matthew turned three years old.

At this point, several months had passed since our first visit to the emergency room and Matthew’s “episodes” (as we called them) had escalated significantly. He would go completely limp and unresponsive. These episodes were now lasting from 5 – 60 seconds. Things took a dramatic turn on Halloween of 2017. It was one of his first big major limp episodes. My parents had taken the boys to Walmart for Halloween candy. Matthew’s limp episode began in the store and he was out for two whole minutes. I called the neurology clinic because it was clear my son was not getting better, but much worse and he needed immediate medical attention. The clinic advised me to take him to the emergency room near their location, which was still three and a half hours away. It didn’t make sense to me because I could get Matthew to El Paso Children’s Hospital quicker since it was only an hour and a half away, clearly the faster choice. At that moment I decided it was better to go somewhere closer in order to get Matthew the attention he needed right away. That choice would prove to be instrumental in receiving accurate diagnoses, medications, treatments, and life-altering procedures my son desperately needed.

El Paso Children’s Hospital staff were fantastic. Matthew was able to receive a Keppra drip to treat his episode and then we were released home! While there, I heard about Dr. Fierro-Stevens for the first time and was interested in his care for Matthew. However, we did not get to see him until later down the road since Matthew was already under the care of a neurologist. Two days after our visit to the El Paso emergency room, we made the long trip up to see the neurologist located in Albuquerque for a follow up on Matthew’s increasing problems. While there, the clinic decided to admit him there for three days for a video EEG. That was the beginning of what already seemed like a nightmare. He was taken off of all medications under the stunning statement that nothing in fact was wrong with him. The medical team up there believed that the staring episodes described were not typical seizures partly because they couldn’t catch them on video within those three days of admission. My mom and I begged for an MRI seeing as he was now three, the previous requirement, and we were still turned down. Again, they stated there was no need for an MRI. We were made to feel like we wasted their time and we couldn’t get anyone to believe us! It was such a nightmare when you don’t know how to help your son and when you try to advocate for him, but instead, get ignored. No one listened or wanted to help anymore. You know how defeated I felt when they said, “do not call our office we will call you to schedule an appointment in six months”? We never did hear from them again and his episodes gradually continued to worsen. But as his mom, I couldn’t give up and refused to stop looking for answers.

Matthew’s coordination was becoming poorer. He tripped and fell more often, even began dropping things frequently. He had severe headaches and said he had “monster eyes”. We started him on a gluten-free diet because his stomach aches were so bad. I was willing to try anything to give him a better life. However, in May of 2018, things escalated once again. I got the worst call of my life – Matthew had been out for over five minutes and EMS had to be called. Yes, he was breathing, but I needed to get to my baby. I remember running up the stairs where I worked crying and shaking uncontrollably. My co-worker had to drive me to my parents’ house. When I got there, he was starting to come out of it, but then he ended up having another episode in the ambulance on the way to the hospital. It wasn’t as long, but I remember thanking God that someone else saw what we have been seeing for 2 years. That someone else could validate our experiences, that there was someone who could say, “yes, this is happening.” It was terrible to see my boy under those conditions but finally someone saw it too and I am not crazy. However, our local hospital still discharged us that same day and he continued to have multiple episodes. At this point, we decided to go for a second opinion at El Paso Children’s Hospital. It’s the only place we had been taken seriously and that had the resources to treat our son.

We finally met with Dr. Fierro-Stevens and were asked to keep Matthew there for three days in order to get him on the right medication. It was a difficult beginning because Matthew’s heart rate kept dropping, but at least it was a concern shared with the attending physician. I didn’t get written off like in the past. They even did an EKG to ensure his health. Thankfully, everything was normal. We were released and came back to Dr. Fierro-Stevens office a week later. He ordered an MRI. Finally! We fought for so long to get the tests needed for Matthew, and this doctor was ready to listen and work with our family to figure out what the next step was going to be. Even if the diagnosis was hard to hear, we wanted to find it and so did this hospital and its staff. It was a completely different environment than what we had experienced in the last couple of years. We finally got the tests that needed to be done, and in June of 2019, we received a diagnosis. He was diagnosed with Arnold Chiari Malformation Type 1. Of course, I went to “Doctor Google” and scared myself, but I felt I had to stay calm and strong for Matthew as well as for my husband. Dr. Fierro-Stevens stated we were lucky because there was a new neurosurgeon in town that could possibly help us with Matthew’s condition. We were given a referral to see Dr. David Jimenez and hoped that our son would be accepted as the next candidate for decompression surgery. Thankfully, Matthew was selected but before we could even schedule the surgery, he had to have another MRI to see if there was a cerebral fluid blockage, which, unfortunately, there was. We had to wait for surgery to be scheduled and insurances to approve, during which time Matthew’s condition worsened and he was admitted to the hospital two more times. Once for the hallucinations caused by a new medication and another time for having 30 episodes in a day. It was difficult to wait and watch as my son lost almost all of his ability to speak, reverting back to mostly communicating through grunts and groans. He would choke several times when swallowing, wanted to stand on his head frequently, his heart rate would drop, and he had many episodes of passing out. I remember thinking the insurance needs to hurry up and approve his surgery. It took what seemed like an eternity for them to approve the surgery, all while watching my boy deteriorate before my eyes. More setbacks unraveled as it had to be rescheduled twice because of how long it took for the approval.

Finally, September 17th, 2019 came, the official date of the lifesaving surgery my son desperately needed. It was the longest five hours of my life as I waited for them to finish brain surgery on my precious little boy. During Matthew’s surgery, his CNP, Sandra, came out every hour to inform us about what was going on and how he was doing. They genuinely cared for us and wanted to keep us involved in the process. After the surgery, Dr. Jimenez came out and talked with us. He stated that Matthew had 28 pounds of pressure on his brain and it was a good thing we decided to do the surgery. We were walked through the whole process during the pre-op by Dr. Jimenez who stated that the first few weeks of recovery would be the toughest. Boy, he was not kidding. It was a difficult road of recovery, but I’m glad we had this hospital and medical team to walk it with us. Matthew was in the PICU for a day and then was transferred to the main floor. He had a difficult time holding anything down and we could not get him to eat. Trying to get him to take his medication was not fun. Due to the vomiting, we had to stay an extra two days for a total of six days. During this trying time, Dr. Jimenez and the nursing staff showed genuine concern for my child. No one tried to rush us out or pretend he was all better, but rather pursued the cautious route for his sake. There was one nurse in particular who advocated for my son to stay the extra days because we lived in Alamogordo and Matthew was vomiting every time he ingested anything. Dr. Jimenez and Sandra checked in on him daily no matter what type of day they may have been having. They ALWAYS had a smile on their faces which gave us a calming sense that everything was going well and would be okay.

After the two weeks, we saw a difference in Matthew; he had begun to thrive. It had been a while since I saw that mischievous smirk on his face. We are now a year out of surgery and let me tell you, he is my child who has to move constantly. He loves numbers and doing math. Matthew’s birthday was on September 24 and he is now a typical six-year-old. He is goofy, happy, active curious, and bright. I would not change the decision to have the surgery. He is now eating regular food, his coordination is not as jerky, fine motor skills are blossoming, and he is finally, finally speaking in long sentences and communicating. If I am being completely honest, I never thought he would have seen his sixth birthday, if it wasn’t for the doctors at El Paso Children’s Hospital. His symptoms became so severe so fast we had no idea what was going on. I cannot thank Dr. Fierro-Stevens and Dr. Jimenez and his staff enough for giving me my son back. For caring enough to see things through and trying everything possible. I didn’t feel crazy or like an annoyance to either of them but rather part of the team.

To the family that may be reading this wondering if this is the right place to be or the right doctor, or if we should even go through with the surgery. In my personal experience, the answer to all those questions will always be a “yes.” It was absolutely an answer to our prayers. There were times where we were so scared, we wanted to cancel but Dr. Jimenez is a miracle worker. I encourage families, especially ones like mine, where you don’t know where else to go, or you feel like you aren’t being heard, to try this hospital and these doctors. They care and will go the extra mile. Having Dr. Jimenez and El Paso Children’s Hospital so close means everything to my husband and me. We know that it is only an hour’s drive as opposed to a seven-hour round trip drive to get amazing medical treatment for both of my sons. It gives us peace of mind knowing that there is such a fantastic neurosurgeon and a great hospital close by to us. Matthew and I are thankful for the El Paso Children’s hospital and Dr. Jimenez’s staff. They were absolutely fantastic and a great resource in our journey to finding answers and seeking treatment for what seemed like a hopeless situation.

~Matty’s Mom