110. Nelly’s Birth Stories: Two Births and a Double Diagnosis of Spinal Muscular Atrophy

Podcast Show NotesEpisode Title: Nelly’s Birth Stories: Two Births and a Double Diagnosis of Spinal Muscular AtrophyEpisode Overview:Join your host Sophia as she interviews Nelly, a mom of two under two, living off-grid in Cazadero, CA, with her husband and a slightly chaotic assortment of animals. Nelly shares her deeply personal and inspiring journey through two wildly different births and navigating the diagnosis of Spinal Muscular Atrophy (SMA) for both of her children.This conversation touches on everything from home birth and VBAC to the realities of navigating the medical system while raising children with a rare genetic condition. Nelly brings raw honesty, strength, and a deep passion for spreading awareness of newborn screening, treatment, and support for families facing SMA.Key Topics Discussed: 1. Two Birth Stories • Nelly’s first birth: navigating a posterior presentation, cesarean section, and a challenging hospital experience. • Her second birth: an empowering VBAC (Vaginal Birth After Cesarean) with the challenges of geriatric pregnancy and a kidney infection. 2. Spinal Muscular Atrophy (SMA) • What SMA is: a rare degenerative genetic disease affecting about 1 in 10,000 births. • The importance of newborn screening for early diagnosis and treatment. • Navigating medical care and treatment options with two young children diagnosed with SMA. 3. Living Off-Grid and Parenting Two Under Two • The joys and challenges of raising a family in harmony with nature while managing medical complexities. • How Nelly and her husband balance daily life with animals, young children, and medical appointments. 4. Tandem Breastfeeding • Nelly’s experience with breastfeeding two children simultaneously and its role in their journey. 5. Raising Awareness • Why newborn screening for SMA is critical for early intervention and treatment. • Encouraging parents to advocate for their children and share their stories.About Nelly:Nelly is a passionate advocate for Spinal Muscular Atrophy awareness, a mom of two under two, and a nature-loving parent embracing off-grid life. Her resilience and commitment to spreading awareness highlight the importance of early diagnosis, proper treatment, and navigating the medical system while maintaining a grounded, loving family life.Recommendations by Nelly: • The Business of Being Born (Documentary)Connect with Nelly: • Instagram: @hughescandoitListen to the Episode: • Podcast Link: Spotify • Instagram: @sophiabirth, @bayareahomebirth, @bornwildmidwifery • Facebook: Podcast LinkFinal Thoughts:This episode is a heartfelt and educational conversation about the realities of parenting through challenging diagnoses, navigating birth choices, and advocating for awareness. Nelly’s courage and strength remind us of the power of family, love, and persistence in the face of life’s most unexpected journeys.Stay Wild 🌳