In the heart of Kentucky, a mother’s instincts were put to the test when she felt something was amiss with her infant son. Vanessa Hickle, concerned about her three-month-old son Easton, faced a frustrating journey with medical professionals who initially dismissed her worries as mere ‘new parent anxiety.’

In 2022, Vanessa noticed unsettling symptoms in Easton. His legs would turn purple, and he exhibited unusual shaking. Despite being born at a healthy weight of 7 pounds 2 ounces, Easton wasn’t hitting typical developmental milestones—he struggled to roll over, couldn’t grasp objects, and had poor head control.

Despite multiple visits to her local practice, Vanessa encountered dismissive attitudes. Doctors attributed Easton’s symptoms to his being ‘chubby’ and assured her he just needed more time to develop, downplaying her concerns as overreaction typical of new parents.

Reflecting on these interactions, Vanessa shared, “The doctor insisted Easton’s delays were due to his weight. He was only a couple of pounds heavier than other children his age, nothing out of the ordinary.” Still, her instincts rang alarm bells. “As a mother, you just have those instincts,” Vanessa explained, standing by her conviction that something more serious was at play.

Hickle said: ‘The doctor said, “He just needs time.” He said Easton was chubby and that was causing him to be delayed. He was a couple pounds more than the other children his age, nothing too crazy. 

‘My gut feeling was telling me something was wrong. As a mother, you just have those instincts.’

When Easton still had not made progress in those milestones at nine months old and his legs were still turning purple, Hickle sought help from a different doctor, who urgently referred the infant to a children’s hospital in a neighboring state.

‘Within five minutes he said, “Something is wrong with Easton’s brain,”‘ Hickle said.

When Vanessa Hickle’s son Easton (pictured here as a baby) failed to meet his milestones, doctors insisted he was just ‘chubby’ and his parents were anxious

Easton, pictured here with Hickle, was diagnosed with rare brain conditions and epilepsy, which have caused developmental delays

Easton underwent blood tests, MRI and electronystagmography (ENG) scans, which measure inner ear and eye movements. These revealed cortical dysplasia, a brain malformation that occurs when the outer layer of the brain forms incorrectly in the womb and causes brain cells and neurons to become ‘disorganized.’

The condition is thought to be caused by a genetic mutation, though the exact pathway is still unclear. There is no public data tracking the number of cases in the US and worldwide, but experts believe it affects five to 25 percent of those with focal epilepsy, which causes seizures that start in a specific area of the brain.

Of the three million Americans with epilepsy, 60 percent, or 1.8million, have focal epilepsy. 

Doctors told Hickle and her husband, Daryl, that Easton would have seizures when he was older, but they were shocked when their son had three separate instances on the same day he was diagnosed. Hickle was forced to perform CPR before an ambulance rushed him to the hospital. 

‘It was an unexplainable feeling, like a nightmare,’ Hickle said.

‘We realized we were right, and for nine months we were told he was perfectly fine and chubby and we were worried for no reason.

‘Me and my husband couldn’t believe it. We were hit with grief for the life we thought we’d have.’

Easton was also diagnosed in 2023 with epilepsy and Joubert’s syndrome, a rare genetic disorder that causes areas of the brain like the brainstem and cerebellum, which controls movement, to form abnormally in the womb. Experts estimate it accounts for one in 100,000 births worldwide. 

Children with Joubert’s syndrome often have decreased muscle tone, crossed eyes, developmental and intellectual delays, a cleft lip and palate and a protruding tongue.  

Easton, pictured in the hospital, began suffering seizures shortly after his diagnosis of cortical dysplasia

Now three years old, Easton (pictured here) is in occupational and speech therapy to help him meet milestones

Easton, now three years old, is non-verbal and non-mobile. He also is on anti-seizure medication and Botox injections for muscle stiffness. He is in occupational and speech therapy to help him meet milestones. 

Hickle said: ‘It was very hard to accept, but I need to be the mom Easton needs. Life doesn’t look like I thought it would when I first had him. I’ve changed to the mother he needs me to be.

‘He can say “mom,” and there is hope he will eventually learn to talk more.’

Now, Hickle is urging other parents to trust their instincts and seek additional answers if they feel ignored by doctors.  

She said: ‘I felt absolutely dismissed, rushed out the door, felt like we were not listened to, and to blame it on new parent anxiety, that’s not okay.’