When you bring your baby home from the hospital, you’re told to expect sleepless nights, endless diaper changes, and new-mom anxiety.
What TikToker Maggie Matthews (@magmatthews_) did not expect was to be the only person who sensed that something deeper was wrong with her newborn.
Her son was born missing part of his brain, and it wasn’t caught until he was four months old. The rest of his brain has defects as well.
“There were no complications; there were no red flags, no markers or anything,” said Maggie. “After we brought him home from the hospital, he started having really brief and subtle seizures.”
“No one else really picked up on them other than me. I just thought that it was postpartum anxiety, but something in my gut was just telling me that it was not normal.”
When she took her son to see the pediatrician, her concerns were dismissed. She was told that he was colicky and nothing more. At first, she was relieved to hear this, but the strange behavior kept happening.
She took him to the emergency room, and the doctor told her to stay off the internet because she was making herself paranoid. After the ER visit, they went to see another pediatrician, who referred them to a neurologist to help alleviate Maggie’s worries.
At the appointment, the neurologist pointed out that her son’s head circumference was pretty small. When Maggie showed the neurologist a video of her son, he stated that her son was definitely having seizures.
After performing some tests, a team of doctors revealed that her son was born missing part of his brain, and the rest of his brain has many malformations.
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A couple of months later, Maggie did genetic testing and was diagnosed with a genetic mutation, TUBA1A-related tubulinopathy. Her son has cerebral palsy, cortical visual impairment (CVI), microcephaly, epilepsy, and complex brain malformations.
Every diagnosis he has is because of the genetic mutation. Her son is now almost five years old. He uses a wheelchair and eats with a feeding tube.
“If you would have told me that our life would be so positive and so full of joy despite his disabilities, I don’t know, I probably wouldn’t have believed you,” said Maggie.
“But I just felt the need to share that because I know there are other parents going through what I went through, and you just feel like you’re hit by a bus, and you’re left on a deserted island by yourself, and there’s no hope, and no light at the end of the tunnel.”
“But there’s so much light and so much love, and it’s just so amazing.”
Looking back, she actually feels grateful for how things worked out.
By Emily Chan
Emily Chan is a writer who covers lifestyle and news content. She graduated from Michigan State University with a degree in... More about Emily Chan
