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When Vanessa Schreckengast gave birth to her youngest son, Merritt, she felt a sense of “relief.”
The Colorado mother-of-three, now 36, had undergone extensive monitoring throughout what doctors termed a “geriatric pregnancy,” with additional blood tests, growth scans and an early induction after several potential concerns were flagged.
Doctors monitored Merritt’s kidneys after scans suggested fluid retention and also noted a possible issue near his spine. At 37 weeks, his head was measuring closer to that of a 34-week-old fetus, while the rest of his body was in the 90th percentile.
“I remember asking if that was a problem,” Schreckengast told Newsweek. “The doctor reassured me that I probably just had babies with small heads. They said his head was not two standard deviations away from normal and therefore there was no concern for microcephaly.”
Understanding Microcephaly
Microcephaly is a rare neurological condition in which a baby is born with a head significantly smaller than expected because the brain has not developed or grown normally. It affects an estimated two to 12 babies per 10,000 live births, with outcomes ranging from mild developmental delays to severe lifelong disabilities.
When Merritt was born healthy, many of Schreckengast’s fears seemed to disappear. Although she noticed he had “a lot of extra skin” on his head, hospital staff told her his head circumference was in the 40th percentile.
“That is when I really felt good,” she said. “‘Phew, we avoided the problem.'”
A Mother’s Instinct
Everything changed 13 days later when Schreckengast’s sister, who had been pregnant at the same time, gave birth.
“When I held her baby, I just knew it,” she said. “I knew Merritt’s head was way too small, and I got this gut feeling that something was wrong.”
She raised her concerns with her pediatrician, who immediately referred Merritt to specialists.
“I felt like everything spiraled out of control from there,” she said.
A Devastating Diagnosis
Merritt was eventually diagnosed with microcephaly and a simplified gyral pattern, a brain abnormality affecting the folds of the brain.
Doctors explained that outcomes vary widely. Some children experience relatively mild challenges, while others develop conditions including epilepsy, cerebral palsy and significant developmental disabilities.
“We hoped he would be on the mild end,” Schreckengast said. “But when Merritt developed infantile spasms at 7 months old, and we couldn’t get them to stop, we knew we would be severely impacted by his disability.”
Living With Daily Seizures
Now, Merritt experiences between 10 and 15 seizures a day, each lasting up to 15 minutes.
According to Schreckengast, every seizure effectively “resets” his brain, making it harder for him to learn and retain skills. Medication helps control the episodes but can cause nausea, vomiting and mood changes.
“Merritt isn’t always smiley and happy, and we can go months without seeing much in the form of smiles or laughs at all,” she said. “He works really hard at therapies, but he can lose his skills or regress because of his seizures.”
Further testing revealed Cerebral Visual Impairment (CVI)—a brain-based visual disorder—as well as hearing loss.
“Learning he has hearing loss has also been a lot because it has required us to start over when it comes to understanding what he is hearing and how he is processing language,” Schreckengast said.
Redefining the Future
Before Merritt was born, Schreckengast worked full-time as a teacher. Today, she works part-time while dedicating much of her time to caring for her son, from preparing his keto-friendly meals to taking him to appointments.
She admits she once grieved for the future she had imagined. Doctors have warned there is a significant possibility Merritt may not live beyond age 5.
“His life is not a guarantee, and it is therefore pointless to worry too much about the future,” she said. “I try to just make sure he knows he is happy and loved every day of his life.”
She added: “I hope that he lives a long and happy life. I hope he knows he is loved every day, and I hope to help advocate and work hard for him to have the most fulfilling and highest-quality life I can give him.”
Building Community
Sharing Merritt’s journey online with videos posted to TikTok under the handle @movingmerritt has connected Schreckengast with families facing similar challenges. “It feels like a huge army sometimes, trying to fight for equity, inclusion and visibility, and I am just proud to be a part of that,” she said.
The family has set up a support page to help cover the cost of Merritt’s treatment and therapies. For Schreckengast, however, the goal remains simple: helping her son live the fullest life possible, one day at a time.
Contact Newsweek editors on this story: Rebecca Flood and Emma Lee-Sang
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