On Sunday August 24th 2014, I noticed my 5 month old daughter, Layla, start to drop her head and tense up her arms and legs. For the first few days, I just thought it may be something new she had learned how to do, so I didn’t pay any attention to it. Then, they got more frequent and intense. She began to have between 10-20 spasms in a row, only lasting about 2 seconds per spasm for 5 minutes about 6-7 times a day. I noticed a personality change, and a decrease in her development. She stopped smiling, cooing, laughing and rolling over. Anyone that knows Layla, knows she is a happy baby and always busy. When I talked to her, she wouldn’t respond: she wouldn’t turn her head to find me, she would react in any way at all. It was kind of like the expression “the lights are on, but nobody’s home.” I then grew extremely concerned and realized this was much more than a new trick she had learned.
Luckily, her 6 month appointment was scheduled in just a couple days. I took a video of the spasms she was having and took it to her pediatrician. Her pediatrician was not familiar with what Layla was having, so she referred Layla to a pediatric neurologist at Children’s of Alabama. Her pediatrician sent us home that day assuming these episodes she was having was not serious, but she wanted to have her checked out by a neurologist to make a more formal diagnosis.
That afternoon, I was talking to my mother-in-law about what Layla’s pediatrician had said. I told her that although the pediatrician didn’t seem worried, I still couldn’t shake the feeling something was seriously wrong. How could my happy 5 month old baby go from smiling, laughing and cooing when we talked to her to a blank expression all the time? And her pediatrician really thinks this may not be serious? I tried to put my feelings and emotions aside, thinking “I’m her mother, I’m making this a bigger deal than it really is. If the doctor thinks its not serious, then it can’t be, can it?” All I could do now was wait for the phone call from Children’s of Alabama with an appointment with a neurologist.
The next day, I took to Google and YouTube for answers. I googled her symptoms: head drop, tensing of extremities in a 5 month old. It led me to a potential diagnosis- Infantile Spasms. First glance of the words staring at me did not seem too serious. I thought to myself, “Infantile-infant. My daughter is an infant now. In less than a year, she will be a toddler. It seems like this will go away before then. Spasms- I have muscle spasms from time to time and they are not serious and they go away with no lasting effects. This cannot be too bad.” Boy was I wrong. Infantile Spasms are indeed VERY serious. What I found was disturbing, not at all what I had in mind. I found that these spasms onsets in infants from ages 4 months to 8 months. 80% of cases of infantile spasm are caused by and underlying neurological problem that could lead to death. Death. Not what I was expecting to read. I was speechless. No way this could be right. So I went to my second resort, YouTube. I looked up videos of Infantile Spasms and this is exactly what Layla was doing. After more and more research of this terrible diagnosis, I had to finally turn off my computer. I was sick. I could not believe what I was reading. My daughter did not seem to fit all the criteria for this diagnosis. To me, she was perfect. She had hit all the normal 5 month old milestones. The only thing was, she was starting to regress.
I waited four long days that felt like weeks for a call from neurology, but the call never came. I called the office and talked to Layla’s pediatrician’s nurse. She said it could be up to three weeks before they even made the appointment. I had explained to her my concerns and findings online, and she told me if I was worried to take Layla on to Children’s ER. At least that way, she would see a neurologist there and it would expedite the process. This seemed like the best decision for my daughter to give her the care she needed.
That afternoon, Josh (my husband) and I took Layla to Children’s of Alabama’s emergency room. The ER physician took a look at the video I had recorded of Layla’s spasms and was almost positive that what my daughter was experiencing was in fact, Infantile Spasms. While in the emergency room, the physician ran a black light over her skin looking for “ashy” spots. He was not able to find any, which turned out to be a good thing. That test ruled out a specific disorder that would cause the spasms, but that particular disorder was degenerative. If Layla would have had this condition, she would have continued to decline until she died. Needless to say, we were extremely thankful this test was negative.
They admitted us for further testing and observation. The ER physician said we would be getting a test called an EEG to check the electrical activity in her brain. When we got to our hospital room, got Layla admitted and everything settled down, this is when it all hit me and I started to break down. Everything I had been reading, everything I had hoped would not be true was. All my dreams for my little girl seemed to be going slowly, but surely, out the window. Would I ever be able to take her shopping for dolls, her school clothes, her prom dress, her first car, her wedding dress….would her daddy ever get to walk her down the aisle, would I get to play dress up with her? All these thoughts flooded my mind as I stood at my daughters side in her hospital bed and all I could do was cry and beg God to please spare my little girl. For this child I had prayed, and begged and pleaded for while I was trying so hard not to loose her while pregnant. Please don’t let me loose her now. At that moment, I began to pray and I prayed this same prayer over her every day until we got the final test results a month later. I prayed, “God, I know you can heal Layla. Your word says where two or more are gathered, there You will be in the midst. We have people all over the United States all the way to Africa praying for her. Your word promises us if we ask in Your name we shall receive. Lord we are asking, begging for Layla to be healed in Jesus’ name. I know You are the Almighty Physician and You are the same yesterday, today and forever. I believe with all my heart that the same God who allowed Lazarus to be raised after being dead four days, made the blind see and the lame walk can touch my little girl right now where she is and take this from her. There is power of life and death in the tongue and I am speaking life, and healing into my little girl. Your word says by His stripes, we are healed and I am claiming this for Layla in Jesus’ precious name.” It was then, my perspective had changed. I got the peace that passes all understanding that is mentioned in Philippians 4:7. At that moment, I knew she was going to be fine. It was the most unexplainable, peaceful feeling I had ever experienced. I promised God that I would not look up another thing about Infantile Spasms, that the only report I believed was His.
The next morning, God was at work. You could see His hand in everything. The EEG tech came to do Layla’s EEG. She explained the procedure and what she was going to be doing to Layla. She stated Layla may have to be on continuous monitoring for hours, it just depended on her. The neurologist assigned to Layla wanted to see her brain activity during a spasm to confirm her diagnosis. No sooner than the technician got all the electrodes attached to Layla’s head, she had a cluster of spasms. Layla only had to be attached to the monitor for 30 minutes.
The neurology team came in about a hour later to sit us down and discuss his findings. He stated her EEG showed a rhythm called “hypsarrythmia” which diagnosed her episodes as infantile spasms. He explained Infantile Spasms are categorized two different ways. Symptomatic and cryptogenic. Symptomatic Infantile Spasms have 200 different underlying neurological causes. Some of those causes meant she would never walk, never talk or could lead to her death. Cryptogenic Infantile Spasms meant they did all the testing, but found no reason for the spasms. He said we wanted to find no cause for the spasms, that if we didn’t, her outcome would be much better. He informed us we would be moving to the neurology unit of the hospital, where we would be admitted for at least a week. His plan of care was for Layla to undergo a MRI, blood work, urine tests, and a spinal tap. He explained the MRI would not be done for a couple days because Layla would have to be put under general anesthesia like she would if she was to have surgery, but the blood and urine would be done that day with the spinal tap the next day.
God had another plan for Layla. That afternoon, we were moved to the neurology unit of the hospital. Layla was asleep upon arrival, and the nurse told us the neurologist wanted to try the MRI while she was asleep. At the time transport arrived to take us to MRI, lab also came to draw her blood. The lab tech woke Layla up when she drew blood from her. Of course, she was not happy and it did not help that it was time for her to eat. Even with her screaming, they took us on to MRI. I fed her three of her small bottles while Josh filled out the paperwork. This particular feeding, Layla wanted a fourth bottle and I only brought three. Imagine that. She was screaming at the top of her lungs. Not even her pacifier was consoling her. The MRI tech said “this is not going to work with her crying, but the doctor wants to try so we will.” Josh then text messaged his grandmother and his aunt who was waiting in Layla’s room, to pray this would work. Having Layla put under general anesthesia was a scary thought. They called other church members and together, they all started praying. They only allowed one parent to go with Layla, so I went. She was screaming as we walked in the door of the MRI suite. As soon as I laid her down on the table, a peace overcame her and she fell sound asleep! The tech strapped her down and started the test. With seven minutes left in the MRI, the tech came back in to check on Layla. She had not moved or cried since I laid her down. He rolled her out and listened to her and she was still asleep. If you have ever had a MRI, you know those machines are LOUD! Even with earplugs, I did not know how she stayed asleep! Layla was sleeping through the whole thing! I can only imagine the sound of the angels voices singing to her and the touch of our Father as He embraced her during the MRI! She completed the test perfectly! The tech said it would be 24 hours before we would know the results of the MRI. At this time, we were escorted back to our room. Like I stated earlier, Gods plan for Layla was different than theirs. Within the hour, the neurologist came in and said they, along with the radiologist, had looked at the MRI and it was all normal! The neurologist said this ruled out a lot of what could cause the spasms, and we was headed in the right direction.
The next morning, the neurologist had come to make rounds and give us more good news! They had gotten back some of the blood work and urine test results, and it all was within normal limits! The neurologist explained that the majority of the blood and urine would be sent off for genetic testing and they would not know the results for another 2-3 weeks after we was discharged.
The plan for the day was a spinal tap. If the spinal tap was normal, we would be discharged. The neurology team gave us the option of going with Layla for her spinal tap, or waiting for her in her room. They told us if we went, she would more than likely cry and scream and we would not be able to comfort her. So we opted to stay in the room. Around noon, they came to get her for the spinal tap. When the procedure was over, the neurologist came by to let us know how it went. They said as soon as they laid Layla down and got her prepped, she fell asleep and slept through the whole procedure! Again, I can only imagine the sounds of the angels voices and the embrace of our Father comforting her! God is so good!
Around 3pm, the neurologist came back and said the results they had all was within normal limits and we would be going home! Like the blood work, some of the spinal fluid would be sent off for genetic testing and we would not know the results for 2-3 weeks after we was discharged. At first we were told that we would be admitted at least a week, now we are being discharged on day 2! God’s plan for Layla was better than the doctors.
They sent Layla home on a course of prednisone and zantac. Within three days of being home the spasms were completely gone! In the weeks after her discharge, Layla learned to sit up alone, eat off a spoon, reach and grab toys, coo, smile and laugh again. Josh and I, along with family and friends continued to pray for her. Layla’s condition continued to improve each day.
At her one month post discharge appointment, we completed another EEG and got all her test results. This was the day I had been waiting for. I knew she was healed. I prayed everyday and I believed it. No doubt in my mind. Layla’s neurologist came in and wanted us to see both EEGs. He showed us the first one and told us it was “bad, really bad”. Then he wanted to show us the one she had completed only hours earlier. He told us it was “miraculously better, it was perfectly normal”! He then gave us the rest of our lab results. All her genetic testing came back negative for any disorders or syndromes! There was a level detected in her blood that was elevated a little, but he said her brain was in such an electric storm that now everything is back to normal, he was confident this level would be too. He went ahead and retested that level to make sure, but told us not to worry, that he was not at all concerned. It was then, Layla’s neurologist hugged me and told me not to worry, she would “live a perfectly normal life. She will grow up to be a mean kid, go off to school and be very smart, turn 16 and drive, and she would get married one day”. I know this is God because I had stood at my daughters hospital bedside worrying about this particular thing. It was His reassurance to me, that I trusted Him with her life and He kept His promise and now my daughter has been healed. She has been made whole. I never doubted one time that He had healed my daughter. I never turned back.
In two months we go back for one more final appointment with the neurology team at Children’s Hospital, then we are finished with this chapter of our lives. I know not every infant diagnosed with Infantile Spasms has a happy ending. I am so thankful and grateful that God has healed my little girl. We now have a testimony of healing to share with the hopeless and Layla will too when she gets old enough to understand. I pray when she is older, she will want to testify for God’s healing and lead those around her to Him. After all she is a living miracle!!
“But he was wounded for our transgressions, He was bruised for our iniquities: The chastisement of our peace was upon Him; and by His stripes we are healed.”-Isaiah 53:5 NKJV