My son Logan was born on March 13, 2020. His birth was unexpected; I was at home when my water broke. Luckily my mother was with me and helped Logan with the birth.
But when he was born, he was completely still and gasping for air, which I now know is painful breathing — that’s how you would breathe if oxygen wasn’t reaching your brain. My mom and I immediately called 911 and was advised to resuscitate him until a medical team arrived.
At that time I was in shock. I wasn’t scared because my main focus was keeping Logan alive, so my motherly fighting instincts took over. But of course when we got to the hospital I was scared and overwhelmed because the doctors didn’t know if he would survive the night.
I later found out that he was not breathing at birth due to hypoxic ischemic encephalopathy (HIE), a brain injury.
I began to process what had happened when I saw Logan in a NICU the next morning. He was unresponsive because he was sedated; I had a hard time seeing that.
Doctors had treated Logan with therapeutic hypothermia, in which they lower his body temperature for a short time to prevent his brain from suffering further damage due to lack of oxygen. Logan was in intensive care for 16 days and I was relieved to bring him home.
When Logan was released I thought he was fine even though he sustained a brain injury. I was told that the only thing I should be concerned about is the fact that he may be visually impaired.
I asked if he would have epilepsy, but the doctors told me that he most likely would not have it. Thankfully, I started doing a lot of research for myself. I noticed that by the age of 3 months, Logan was showing signs of developmental delay. He didn’t raise his head very well and didn’t use his hands as much as he should have. He also didn’t move as spontaneously as some babies of that age would normally do.
Diagnosis of infantile spasms
Just before Logan turned 4 months, I had also noticed that he had started to crunch forward in a fetal position. He would jerk forward, his arms would make a fist motion, and his legs would come up. At first I thought he was trying to move his body, but I’d never seen a baby make that movement before, so I figured it wasn’t normal.
That same week Logan had an appointment with a neurologist and when I showed a doctor a video of his movements they said it looked normal.
A week later, the morning I was getting ready to take Logan to therapy, he was sitting in a baby rocking chair. Suddenly he started making the same grinding movement, but this time repeatedly, and it lasted twenty minutes. I knew then that Logan urgently needed to be seen by a doctor. So I rushed to take him to the emergency room.
I had a feeling that maybe Logan was having infantile spasms because I had joined a hypoxic ischemic encephalopathy support group two weeks earlier. Fortunately, therefore, I was aware of the early signs of infantile spasms, some of which are a sudden stiff bending of the waist, a subtle nod of the head, and a loss of balance. I was also aware that Logan’s type of brain injury is one of the most common causes of infantile spasms.
In the hospital I was nervous and scared. I knew infantile spasms were dangerous and should be treated quickly and aggressively. When I got to the ER, the doctor looked at a video I took and immediately said that Logan might have infantile spasms. I felt validated. I had been right, and it made me trust my instincts more.
Shortly thereafter, Logan was hooked up to an electroencephalogram (EEG) to get a definite diagnosis. It took about 40 hours to capture his brain pattern.
Upon his diagnosis, Logan immediately began taking a high-dose steroid, which is a front-line drug for infantile spasms. This was very important as infantile spasms typically result in developmental regression and as he already had a brain injury he was at risk of developmental problems.
Logan took medication for two weeks and then weaned it for two weeks as recommended. Luckily the infantile spasms stopped after nine days and I was relieved. But the next day, after we stopped his medication, he started having partial seizures and myoclonic seizures, which I now know are not uncommon in 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 afraid it would damage his brain more.
I remember being scared all the time during that time. Logan had many seizures every day, which filled me with anxiety. I really wanted someone to help him.
A recurrence of infantile spasms
I was constantly in the emergency room at a children’s hospital ten minutes from our home in Georgia. But after seeing that Logan wasn’t getting the help I felt I needed, I ended up switching hospitals to another three hours away.
On our first visit, Logan was put on an EEG for five to six days to monitor his brain activity, and during that time he appeared to be having infantile convulsions again.
He was released and when we got home, Logan was having infantile convulsions again. They were very frequent and I knew then that he had relapsed.
I drove 12 hours to get Logan to Le Bonheur Children’s Hospital in Memphis, Tennessee and as soon as we got there he was admitted immediately and diagnosed with a recurrence of infantile spasms. He was 7 months old when he relapsed and I think before the relapse was officially diagnosed he had severely regressed.
For example, Logan had very good head control and he used his arms and hands functionally. Immediately after his infantile convulsions recurred, he completely stopped using his hands and arms. He has since managed to gain control of his left arm, but his hands are often clenched into fists.
Logan’s head control was also completely gone for a long time, although it’s back now. But he can no longer sit up straight, which is difficult. That’s what he’s working on in therapy. I feel like there isn’t enough education or awareness about infantile spasms in the medical community, and I’ve come across this with a few doctors I’ve met.
A bright future for Logan
However, at Le Bonheur Children’s Hospital I felt that my concerns were validated. I’m not worried about Logan’s well-being because I know he’s being taken care of. And if I have any concerns, I can record a video and send it to a specialist through an online portal and I’ll get a response within 24 hours.
Thankfully, Logan didn’t have seizures for a year, but they returned in May 2022, so he started the medication. He currently has about eight to ten small seizures a day, but they don’t bother him and of course we’re still working on getting them under control.
I can’t stress enough the importance of knowing the signs of infantile spasms because if I hadn’t received this education from my support group, Logan might have had infantile spasms for months.
I am grateful that I can help others who are 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 adversities to overcome. He is almost 3 years old and helped me find my voice. I had to learn to stand up for him and trust my gut feeling.
Hope Riley uses her platform to raise awareness of infantile spasms. You can find out more about them here.
All views expressed in this article are the author’s own.
As Carine Harb, Associate Editor of Newsweek, said.
Do you have a unique experience or personal story to share? Email the My Turn team at firstname.lastname@example.org
https://www.newsweek.com/was-told-my-child-was-fine-then-discovered-truth-1770224 “I was told my child was fine, then I discovered the truth”