Episode Summary: "Kalla & Ivy's Story: Fighting to Breathe"
Introduction
In this emotionally charged episode of The Medical Detectives, hosts Dr. Caleb and Emily delve into the harrowing yet inspiring journey of Kalla and her daughter, Ivy. This episode, released on May 7, 2025, underscores the relentless fight of a mother navigating through a labyrinth of medical uncertainties to save her daughter's life. From childbirth complications during the height of COVID-19 to a rare genetic diagnosis, Kalla's story is a testament to perseverance, advocacy, and the profound emotional toll of medical misdiagnosis.
Kalla's Pregnancy and Birth of Ivy
Kalla discovered she was pregnant with her second child in December 2019. Her pregnancy proceeded normally until the outbreak of COVID-19 introduced unprecedented challenges. She recounts the difficulties of giving birth under strict COVID-19 restrictions:
"I went into labor in July, end of July. So it was a full mask delivery... pretty normal delivery. And then I lost a lot of blood because the placenta didn't fully leave my uterus..." [01:50]
The delivery was traumatic, culminating in Kalla barely regaining consciousness and witnessing her newborn, Ivy, struggle to breathe immediately after birth.
Early Symptoms and Initial Medical Response
Ivy exhibited alarming symptoms from birth, including irregular breathing patterns where she would stop and start breathing unpredictably:
"She would go... and then she would just go on with her little day. And she would do that constantly." [04:15]
Kalla's concerns were initially dismissed by pediatricians who attributed Ivy's symptoms to "neurological maturities" and common neonatal issues. Frustrated by the lack of acknowledgment, Kalla persisted in seeking medical attention.
Struggles with Misdiagnosis
As days turned into weeks, Ivy's condition worsened. She wasn't gaining weight, was unable to breathe properly, and struggled with bowel movements. Despite repeated ER visits and consultations, medical professionals remained unconvinced of the severity of Ivy's condition:
"Everyone who spent any time with her... was like, there's something seriously wrong with this baby." [05:00]
Kalla faced a series of misdiagnoses, being told Ivy's symptoms were typical for a newborn when, in reality, they were indicative of a rare genetic disorder. The lack of proper diagnosis led to emotional strain and isolation for Kalla, compounded by the limitations imposed by the COVID-19 pandemic.
Emotional Toll on Kalla and Family
The prolonged uncertainty and dismissal of Ivy's symptoms took a significant emotional toll on Kalla. She describes a sense of numbness and the constant fear of Ivy's deteriorating health:
"I'm so scared, Ava's gonna die. I have to box it in... I need to live my life, and she can have a normal childhood." [58:00]
Kalla’s support system, including her husband and mother, provided crucial emotional backing. However, the continuous battle against medical skepticism led to feelings of doubt and fear, highlighting the psychological challenges faced by parents advocating for their sick children.
The Diagnostic Breakthrough
The turning point in Ivy's medical journey came after persistent advocacy from Kalla. Through comprehensive testing and a genetic panel, Ivy was diagnosed with Para Myotonia Congenita Snell (PMC Snell), a rare genetic disorder affecting muscle function and breathing:
"When she turned blue again, we headed to Mayo... We started the discovery." [54:00]
This rare condition explained Ivy's severe breathing issues and other neurological symptoms. Despite the rare diagnosis, treatment options were limited but provided some relief:
"She takes two different sodium channel blockers... She's also maxed out on them pretty high doses." [54:56]
Treatment and Current Status
Post-diagnosis, Kalla and her medical team implemented a treatment regimen involving sodium channel blockers, which significantly improved Ivy's breathing and overall health. While the medication managed some symptoms, Ivy still faces challenges:
"She is still not growing and not breathing right. So we have to wake her up and do dream feeds and everything." [14:18]
The diagnosis also necessitated lifestyle changes, including relocating to a more favorable climate for Ivy's condition and adopting emergency protocols to manage severe episodes.
Reflections and Conclusion
Kalla's story is a poignant reminder of the critical importance of trusting parental instincts and the profound impact of medical misdiagnosis. Her relentless fight not only saved her daughter's life but also brought awareness to a rare genetic disorder that could affect many more families. The episode concludes with a powerful message about the strength of medical mothers and the necessity of advocacy in the face of medical uncertainty.
Emily reflects on the societal biases that often undermine postpartum women’s credibility, highlighting the need for greater empathy and support:
"The stereotype of women being crazy post-pregnancy... got in the way of her child getting the care it deserved." [71:07]
Dr. Caleb emphasizes the significance of sharing such stories to foster a supportive community:
"By sharing these stories, I think we're going to uplift the whole community." [75:34]
Notable Quotes
- "If you don't fight for yourself, no one will." – Kalla [75:34]
- "This box isn't sad. This box is survival." – Kalla [68:31]
- "The diagnosis doesn't change reality. Reality is she has atonia and the severest form." – Kalla [53:03]
Resources and Support
Kalla encourages listeners facing similar struggles to join support groups, particularly highlighting a Facebook group dedicated to myotonic conditions. This community provides a space for shared experiences and mutual support, underscoring the episode's theme of collective resilience.
Conclusion
"Kalla & Ivy's Story: Fighting to Breathe" is a compelling episode that sheds light on the intricacies of rare medical conditions, the challenges of navigating a flawed healthcare system, and the indomitable spirit of a mother’s love. It serves as both a cautionary tale and a beacon of hope for those battling medical mysteries, emphasizing the importance of advocacy, support, and unwavering belief in the face of adversity.