She Thought Her Baby Was Just Small: Then Doctors Discovered A Rare Brain Disorder
When her daughter Poppy was born, TikToker Kaylee Massey (@poppy_and_kaylee) was not aware that anything was wrong with her.
Sure, she was smaller than average, but all babies are different. However, the family learned that Poppy had a rare genetic disease when she was around three or four months old.
After that, she would only live for one year before passing away. Poppy was missing part of her brain, and the condition was not detected during the ultrasound or the prenatal genetic screening.
Kaylee had two children and was excited when she got pregnant with her third. Her pregnancy was pretty typical. Poppy had a tiny head and came out easily.
Kaylee and her husband brought her home from the hospital 24 hours later. Right off the bat, Poppy was having trouble eating.
When she was three days old, they took her to a pediatrician. The pediatrician had some concerns about Poppy and even discussed with other colleagues about her condition.
At the two-month appointment, the pediatrician said that Poppy was growing and developing, but her head was still so small.
A month and a half later, they realized something was really wrong with her. At first, it started off as concerns about her vision. Poppy seemed like she couldn’t see very well.
During the four-month appointment, the pediatrician noted that Poppy’s head had not grown. He did several vision tests and decided to refer her to a pediatric ophthalmologist. The doctor said Poppy’s eyes were fine, but something was going on in her brain.
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So, they took Poppy to get an MRI. Soon, the doctors discovered that Poppy was missing the center part of the brain, which is called the corpus callosum.
No one with this specific genetic disorder had ever been diagnosed before they were born, as it isn’t caught by the tests.
They started doing therapies for Poppy to help her thrive and grow. But at six months old, her feeding issues got worse.
The pediatrician connected Kaylee to a feeding team consisting of a dietitian and a physical therapist.
In addition to the feeding therapy, they were also doing occupational therapy in the home and meeting with a vision therapist. Poppy even got to go on two family trips to Oregon and San Diego.
After more tests were done, Poppy officially received the diagnosis of cerebral visual impairment (CVI) of the brain. Sadly, she died soon after.
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