Sonja: Advocacy, Intuition, High Risk Pregnancy and the Incredible Fight to Change Her Son's Future, Once Defined by Cystic Fibrosis
When an ultrasound technician uttered the words "his neck is sick" during a routine 12-week scan, Sonia's world tilted on its axis. What should have been a joyful glimpse at her second baby instead launched her family into a medical odyssey that would test their resilience, challenge their beliefs, and ultimately change the landscape of treatment for an incurable disease.
Sonia's story isn't just about giving birth in Switzerland (she gave birth at HUG in Geneva)—it's about the extraordinary measures a mother will take when faced with a devastating diagnosis. At 22 weeks pregnant, after a high nuchal translucency measurement led to deeper genetic testing (the story to get there is incredible in it's own), Sonia learned her unborn son had cystic fibrosis. With her first child just 10 months old and no family history of CF, the news was shattering. Faced with the impossible choice between termination and continuing a pregnancy that promised hardship, Sonia did what few would have the courage to do—she questioned everything.
What follows is nothing short of remarkable. Through relentless research, Sonia discovered Trikafta, an expensive, unapproved treatment that might help her son even before birth. She connected with researchers worldwide, joined tiny online support groups, and eventually sourced the medication through a CF patient halfway across the globe. Becoming only the eighth woman worldwide known to take this medication during pregnancy, she watched in awe as her son's previously invisible gallbladder appeared on ultrasound three weeks later—proof the medicine was working.
Despite placenta previa, multiple hospitalizations, and an emergency C-section at 35 weeks, Seth was born fighting. Though separated from him for twelve agonizing hours after birth (prompting a fierce confrontation where she told hospital staff "I am fucking going now"), Sonia's determination never wavered. Today at 20 months old, Seth exhibits none of the devastating symptoms typically associated with CF—no digestive issues, no lung problems, and remarkably, he'll be fertile, something previously impossible for males with CF.
This extraordinary journey showcases the power of maternal intuition, medical advocacy, and the courage to challenge established protocols. Through sharing her experience, Sonia has helped approximately 30 other babies worldwide access life-changing treatment. Her message is clear: trust your instincts, do your research, and never stop fighting for your child's future.
Cystic fibrosis, or CF, is a rare inherited disease that affects about 1 in 3,300 newborns in Switzerland - around 1,000 people nationwide and more than 105,000 worldwide.
CF makes mucus, sweat and digestive fluids thick and sticky, clogging vital organs like the lungs and pancreas.
Once a childhood killer, CF is now a condition where many children born today are expected to live into their 60s. New treatments may push life expectancy even further and research continues to work towards a hopeful cure.
Read more about Seth's story: https://www.instagram.com/cf_mama_on_trikafta/
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The SwissCast Podcast Network is here to amplify the diverse voices and unique stories of Switzerland—all in English. Whether you're a Swiss local fluent in English, an expat, or simply curious about Swiss culture, SwissCast offers engaging content that speaks directly to you. Our mission is simple: to create a space where Swiss life and English voices connect, bringing you meaningful conversations, expert insights, and compelling stories from all over the country. Our podcast shows are made by, for, or in Switzerland and range from Health, Business, Career, Travel, and more.
00:00 - Untitled
00:01 - Welcome to Season 2
01:32 - The Path to Parenthood
05:53 - Unexpected High-Risk Pregnancy
14:01 - Devastating CF Diagnosis at 22 Weeks
30:34 - The Decision to Continue the Pregnancy
43:16 - Finding a Miracle Medicine
52:57 - Placenta Previa and Emergency Birth
01:00:58 - Fighting for Access to Her Baby
01:16:37 - Seth's Life with Groundbreaking Treatment
