'I Was Told That My Child Was Fine, Then I Discovered the Truth'

My son, Logan, was born on March 13, 2020. His birth was unexpected; I was at home when my water broke. Luckily, my mom was with me and she helped deliver Logan.

But when he was born, he was completely silent and gasping for air, which I now know to be agonal breathing—this is how one would breathe when oxygen isn't reaching their brain. My mom and I called 911 immediately, and I was advised to give him CPR until a medical team arrived.

At the time, I was in shock. I didn't feel scared because my main focus was keeping Logan alive, so my motherly, fighting instinct took over. But of course, when we arrived at the hospital, I began to feel scared and overwhelmed because the doctors didn't know if he would live through the night.

I later found out that he wasn't breathing at birth due to hypoxic ischemic encephalopathy (HIE), which is a brain injury.

Hope Riley is a Mom of One
Hope Riley (pictured) gave birth to her son, Logan, in March 2020. He was then diagnosed with infantile spasms when he was 4 months old. Hope Riley

I began to process what had happened when I saw Logan the next morning in a neonatal intensive care unit. He was not responsive because he was sedated; it was difficult for me to see that.

The doctors had treated Logan with therapeutic hypothermia, which is when they lower body temperature for a short time in an effort to stop his brain from acquiring more damage due to the lack of oxygen. Logan was in an intensive care unit for 16 days and I felt relieved when I was able to take him home.

When Logan was discharged, I thought that he was fine, though he had experienced a brain injury. I was told that the only thing that I should worry about was the fact that he may be visually impaired.

I asked if he would have epilepsy, but I was told by doctors that he most probably would not. Luckily, I began doing a lot of research for myself. I noticed that Logan began showing signs of a developmental delay when he was 3 months old. He wasn't picking his head up very well, and wasn't using his hands as much as he should have been. He also didn't move as spontaneously as some young babies that age typically would.

Being diagnosed with infantile spasms

Just before Logan turned 4 months old, I had also noticed that he had begun crunching forward in a fetal position. He would jolt forward, his arms would go into a fist motion, and his legs would come up. At first, I thought that he was trying to move his body, but I had never seen a baby do that movement before, so I felt that it wasn't normal.

That same week, Logan had a neurology appointment and when I showed a doctor a video of his movements, they said that it appeared normal.

A week later, in the morning, when I was getting ready to take Logan to therapy, he was in a baby rocker chair. Suddenly, he began doing the same crunching movement, but this time repetitively, and it continued for twenty minutes. That's when I knew that Logan needed to be seen by a doctor urgently. So, I rushed to take him to the emergency department.

I had a feeling that Logan may have had infantile spasms because two weeks prior to this, I had joined a support group for hypoxic ischemic encephalopathy. Thankfully, because of that, I knew the early signs of infantile spasms, some of which are a sudden stiff bend at the waist, subtle head nodding, and a loss of balance. I was also aware that Logan's type of brain injury is one of the common causes of infantile spasms.

At the hospital, I was nervous and scared. I knew that infantile spasms were dangerous and that they should be treated quickly and aggressively. When I arrived at the emergency department, the doctor took a look at a video that I had taken, and immediately said that Logan may have infantile spasms. I felt validated. I had been right, and it prompted me to trust my instincts more.

Hope Riley is a Mom of One
Hope Riley and Logan Riley (pictured). Hope Riley

Shortly after, Logan was hooked to an electroencephalogram (EEG) to get a firm diagnosis. It took roughly 40 hours to capture his brain pattern.

After his diagnosis, Logan immediately began taking a high dose steroid, which is a frontline medication for infantile spasms. This was very important because infantile spasms typically lead to developmental regression and with him already having a brain injury, he was at risk of having developmental problems.

Logan took medication for two weeks, and then he weaned off of it for two weeks, as advised. Thankfully, the infantile spasms stopped after nine days, and I was relieved. But the next day, after we had stopped his medication, he began having focal seizures and myoclonic seizures, which I now know isn't uncommon for someone with a brain injury.

I was always very worried about him because I wanted him to be healthy and happy, but when he started having seizures, I was scared that it would hurt his brain more.

During that time, I remember feeling constantly scared. Logan began having many seizures a day, which filled me with anxiety. I desperately wanted somebody to help him.

A relapse of infantile spasms

I was constantly in and out of the emergency department at a children's hospital that was ten minutes from our house in Georgia. But after seeing that Logan wasn't getting the help I felt he needed, I ended up switching hospitals to another that was three hours away.

During our first visit, Logan was put on an EEG to monitor his brain activity for five to six days, and during that time he appeared to me to be having infantile spasms again.

He was discharged and when we arrived home, Logan began having infantile spasms again. They were very frequent, and it was then that I knew that he had relapsed.

Logan Riley Had Infantile Spasms
Logan Riley (pictured) is 3 years old. Hope Riley

I drove 12 hours to take Logan to Le Bonheur Children's Hospital in Memphis, Tennessee and as soon as we had arrived, he was admitted right away and diagnosed with a relapse of infantile spasms. He was 7 months old when he had a relapse and I believe that before the relapse was officially diagnosed, he regressed a lot developmentally.

For example, Logan had very good head control and he used his arms and hands functionally. Immediately after his relapse of infantile spasms, he stopped using his hands and arms completely. Since then, he has managed to gain control of his left arm, but his hands are fisted a lot.

Logan's head control also completely went away for a long time, although now it's back. But he isn't able to sit upright anymore, which is difficult. He is working on it in therapy. I feel that in the medical community, there is not enough education or awareness of infantile spasms and I encountered this with some of the doctors I met.

A bright future for Logan

However, at Le Bonheur Children's Hospital, I felt that my concerns were validated. I do not feel anxious about Logan's well-being because I know that he is being taken care of. And, if I have a concern, I am able to take a video and send it to a specialist through a portal online, and I receive a response within 24 hours.

Thankfully, Logan went a year without having any seizures, but they returned in May 2022 so he has started medication for that. Currently, he has roughly eight to 10 small seizures a day, but they don't bother him, and of course, we are still working to get them under control.

I can't stress the importance of knowing the signs of infantile spasms enough, because had I not gotten that education from my support group, Logan may have had infantile spasms for months.

I am thankful to be able to help others going through a similar situation. I have become an advocate, raising awareness of infantile spasms. Logan is hilarious, loving, and very smart. He just has some adversity he has to overcome. He's almost 3 years old, and he has helped me find my voice. I had to learn how to stand up for him and trust my gut.

Hope Riley uses her platform to raise awareness of infantile spasms. You can find out more about her here.

All views expressed in this article are the author's own.

As told to Newsweek associate editor Carine Harb.

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