by Althea Grace | In Recognition of Infantile Spasm Awareness Week 2021
About the Author
In addition to being a self-described ‘medical mama’ to her daughter Lennon, Althea Grace was a Top 40 contestant on ABC’s American Idol and continues to work as a recording and touring artist, singer, songwriter, guitarist, and bassist. You can follow her journey on Instagram at @altheagracemusic.
My daughter, Lennon, was born with a rare genetic disorder called Tuberous Sclerosis Complex (TSC). TSC causes benign tumor growths in any (and every) organ system in the body. For Lennon, this means tumors in her brain, heart, and kidneys. And furthermore, seizures.
Lennon was originally diagnosed with Infantile Spasms (IS) which led to a blanket diagnosis of Epilepsy. She is now on two anti-seizure medications and we don’t leave the house without a rescue med loaded in my purse. She is enrolled in many different therapies to help support her development and receives supplemental feeds through her gastric tube (g tube).
Lennon was not diagnosed with TSC at birth. She was born a perfectly healthy baby who went home with no issues and lived a typical life as a newborn. She was born with ash leaf spots (white-colored skin spots typically that can be common with TSC) but we were told they were birthmarks and went on as normal.
When Lennon was 10 months old, I noticed something was off for the first time. She started making subtle movements that seemed to be involuntary. She had sudden jerking of her arms and legs, quick eye movements, and momentary spells of blank staring. I immediately hopped on the computer and started googling. Within a few moments, I was watching videos of babies having infantile spasms, and they were identical to Lennon’s movements.
I called Lennon’s pediatrician and brought her in to see him. I videotaped every spasm I could and showed them to him. He immediately agreed the movements were concerning and called a neurologist. This was a Friday and he secured us an urgent appointment for the coming Tuesday.
On Saturday, I noticed the episodes were happening more frequently and I became more and more concerned. When left untreated, Infantile Spasms only get worse and more difficult to treat.
Sunday came and Lennon was at the point of “seizing” all day. It went from hours between episodes to just minutes. I put her in the car and drove straight to the emergency room of the hospital where Lennon’s soon-to-be neurologist worked.
Upon arrival, I said to the intake nurse, “I believe my daughter is having seizures,” and I was met with an untrusting and skeptical look. Nonetheless, the ER team decided to admit Lennon to run an electroencephalogram (EEG) to monitor her brain activity.
The next morning, I met the neurologist. By this point, I had spent the entire night in the hospital researching every possible diagnosis imaginable. I even came across TSC and connected the dots that the “birthmarks” Lennon was born with might be those trademark ash leaf spots.
I explained to the neurologist every episode I had witnessed and even presented him with the possibility that Lennon might have TSC. He asked me to show him the videos of her spasms. He watched 30 seconds of a video, looked at me, and scoffed, “You think these are infantile spasms? My EEG will show us if that’s true, but I don’t think so.”
Within a few hours of the EEG, Lennon was diagnosed with infantile spasms. Her team ordered an MRI to see if they could find the source of her spasms. Because Lennon was still an infant, they needed to perform an echocardiogram before proceeding to make sure she would be safe under anesthesia.
The echo showed tumors in her heart.
Lennon’s neurologist came back into her room a few hours later sheepishly. He sat me down and said, “I am so sorry I doubted you. Your daughter has tumors in her heart and I am clinically diagnosing her with Tuberous Sclerosis Complex.”
I have never felt more devastation and simultaneous relief than in that singular moment.
From the very first moment we walked into the hospital, I was met with hesitation and disbelief. Doctors and nurses looked at my “normal” looking baby and assumed I was scared for her health for no good reason.
I was a first-time parent (and a single mom to boot) and, more often than not, felt like I had no idea what I was doing. Lennon has had a long and difficult journey with her health. She’s been in a hospital bed more days than not, received countless treatments for countless illnesses, and even required a liver transplant when she was 1 year old. The specific reason for each hospital stay can vary, but they all start with me noticing that she needs help and trusting my intuition.
Every trip to the ER has started with the same statement: “My daughter seems okay, but I just know she’s not.” And, I have never been wrong.
The connection parents have to their children is inexplicable. Children can’t always tell us what they’re feeling or what is wrong. But I now strongly believe that when you know, you know.
I have learned so much during my three years as a medical mama. I used to sit in her hospital room feeling helpless and like I had no say in what was happening to my child. But now, I’ve discovered my own strength and knowledge and the important role those play in her care. I know which nurses to page when Lennon needs an IV placed. I know the difference between “a little under the weather” and “this is an emergency.”
I never went to medical school. I haven’t read a million books or taken a bunch of classes. But I’ve learned my child, and in that area, I am the expert. I’ve learned her cues. I’ve tuned myself into the “feeling” I get when something is off. There has never been a day when I thought I might need to take Lennon to the ER and didn’t. Babies and young children do not have the ability to advocate for themselves. So if, even for a second, I think something may be wrong, I act on it.
The greatest advice I can give to any parent is to trust your intuition, whether it’s something as major as a diagnosis like Lennon’s or just knowing that your baby needs extra cuddles when they don’t feel well. There will always be doctors, teachers, family members, or strangers that push back on your decisions as a parent, but no one will ever know your child like you do.
I am so proud of my daughter for the strength she has had throughout this medical journey we’ve been on. And I am proud of myself too. I am proud of myself for standing my ground and believing in myself when every health care worker I met didn’t. I am proud of how far Lennon and I have come, thanks to my trust in my own intuition.
To learn more about infantile spasms, visit the TSC Alliance website: https://www.tscalliance.org/about-tsc/signs-and-symptoms-of-tsc/brain-and-neurological-function/infantile-spasms/