For 28 years, Mieke lived with a persistent sense of being fundamentally different, a feeling of being out of sync with the world around her. Recurring mental health struggles led her through a series of evaluations, initially dismissed as behavioral issues in childhood and later considered, but ultimately rejected, as attention-deficit/hyperactivity disorder (ADHD) during adolescence. The root cause remained elusive, shrouded in a lack of understanding surrounding the long-term consequences of premature birth. Now, a diagnosis of brain injury stemming from her early arrival has finally provided answers, offering a sense of relief and a path toward understanding a lifetime of challenges.
Mieke’s early years were marked by frequent visits to pediatricians due to her emotional and behavioral difficulties. While she and her parents suspected a connection to her premature birth, healthcare providers at the time didn’t explore that possibility. This was a period when awareness of the lasting impact of prematurity was limited. However, in 1983, the POPS study (Prevention of Prematurity-related Sequelae) – a Dutch scientific investigation into the health and development of prematurely born children – was initiated. Unfortunately, the results of this groundbreaking research were not readily available during Mieke’s formative years.
A Search for Explanation and the Weight of Loneliness
As Mieke entered puberty, she sought help from several psychologists, who considered a diagnosis of ADHD. “I just didn’t identify with it,” she recalls. “No one seemed to understand what was really going on. Because I never received a clear explanation, my parents treated me like a ‘normal’ child, which led me to believe the problem was all in my head.” This lack of understanding fostered a deep sense of isolation. Mieke describes feeling as though she was fighting a solitary battle, which exacerbated her depressive symptoms.
By age 17, Mieke turned to alcohol as a means of coping. “It was the only way I could find peace,” she explains. Despite these struggles, she pursued a creative education and eventually found work as a graphic designer. “Traditional learning wasn’t for me. Creative work was the only thing I could do, but even that was difficult.” As she grew older, Mieke observed her peers achieving milestones – building careers, forming relationships, and establishing homes – while she felt stuck, unable to find her footing. Her mental health continued to deteriorate, leading to a decade of intermittent alcohol use as a way to numb her pain.
The culmination of these challenges led to a complete breakdown at age 28. “I burned out and couldn’t work anymore,” Mieke says. “I finally called my parents and told them I couldn’t go on. I didn’t want to live if things continued this way.”
Unraveling the Mystery: A Diagnosis After Decades
Mieke was admitted to a crisis mental health facility, where she expressed suicidal thoughts. It was there that a psychiatrist took her case seriously, recognizing the extensive history documented in her medical records. While acknowledging Mieke’s despair, the psychiatrist prioritized understanding the underlying cause of her struggles. A series of neurological examinations ultimately revealed that Mieke had sustained brain injury as a result of her premature birth.
“I felt such relief,” Mieke says. “You’d think a diagnosis like that would shatter your world, but I just thought, ‘Finally.’” The tests revealed that Mieke’s brain processes information at a slower rate. “The psychiatrist told me these were some of the most exceptional results she’d ever seen,” she explains. “My visual perception is strong, but my slow processing speed hinders my ability to utilize it effectively. This leads to overstimulation and a greater need for rest. Everything suddenly clicked into place. I finally had answers to the problems I’d been grappling with for years.”
Finding an Outlet Through Music and Advocacy
Following her diagnosis, Mieke embarked on a six-month rehabilitation program. “I had to relearn how to cope with overstimulation, fatigue, and how my body works – essentially, rehabilitate from something I’d been living with for 28 years. I also had to process the trauma that had resulted from all of this.” She was also declared unfit for work, forcing her to re-evaluate her future.
Mieke ultimately turned to music, a lifelong passion, forming a band called MIEKS with eight other musicians. “Sometimes it takes me three days in bed to recover, but I also obtain so much energy from it,” she says. “Through my lyrics, I can share my story and process everything I’ve been through.”
The Need for Specialized Care for Premature Birth Survivors
Mieke acknowledges that she still experiences a constant sense of restlessness, but now understands its source. “That will likely never go away, but understanding where it comes from helps me manage it. I’m finding more joy in life now, largely because I’ve found an outlet for my experiences through music.”
Throughout her life, Mieke has been searching for answers that she believes could have been found sooner with a specialized clinic for individuals born prematurely. “I really missed something like that,” she says. “It would be incredibly helpful if people born prematurely had a place to turn, where experts could assess their situation and provide appropriate support. More attention needs to be given to this issue, because premature birth marks you for life.” Research consistently demonstrates that individuals born prematurely are at increased risk for a range of neurodevelopmental challenges, including cognitive impairments, behavioral problems, and mental health conditions. A 2019 study published in *Pediatrics* highlights the long-term neurocognitive outcomes of exceptionally preterm birth.
If you are struggling with suicidal thoughts or are concerned about someone else, please reach out for help. You can call 113 or visit www.113.nl. Stichting Zelfmoordpreventie is available 24 hours a day, seven days a week.
Mieke’s story underscores the critical need for increased awareness and specialized care for individuals born prematurely. The Dutch healthcare system is currently evaluating options for improved long-term follow-up care for premature infants and their families, with a focus on early identification and intervention for potential neurodevelopmental challenges. The next step in this process is a parliamentary debate scheduled for November 2024, where proposed funding for these initiatives will be discussed.
Share Mieke’s story to help raise awareness about the lasting impact of premature birth and the importance of early diagnosis and support. Your voice can contribute to a more informed and compassionate understanding of the challenges faced by individuals like Mieke.
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