Tetralogy of Fallot (TOF): A Nurse Practitioner's Journey Through Her Daughter's CHD

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In this inspiring episode, we meet Sarah Michelle Boes—nurse practitioner, entrepreneur, and mom to Meadow, who was diagnosed in utero with Tetralogy of Fallot and multiple congenital heart defects. Sarah brings a powerful trifecta of perspectives: as a medical provider, mental health advocate, and dedicated heart mom.

We cover:
✅ Meadow's life-saving heart surgeries and long ICU stays
✅ How Sarah navigated new motherhood with OCD and anxiety
✅ The emotional toll of being both a medical provider and a parent
✅ Creating a connection through medical play to ease doctor visits
✅ How Sarah turned survival into purpose through national advocacy

Whether you're a fellow medical parent, healthcare provider, or mental health professional, this episode will leave you with real insight into the raw challenges and unexpected joys of raising a child with complex medical needs.

Key Topics & Highlights

[00:00] – Meet Sarah Michelle Boes

• Nurse practitioner, entrepreneur, and heart mom
  
  

• Her daughter Meadow's surprise diagnosis of Tetralogy of Fallot at 36 weeks
  
  

⏱️ [03:00] – From Business Success to Medical Crisis

• Selling her business weeks before Meadow's diagnosis
  
  

• The shock of learning Meadow had four heart defects
  
  

⏱️ [05:00] – Learning to Navigate as a Medical Parent

• How Sarah's medical background helped (and complicated) her parenting
  
  

• Teaching her husband how to advocate medically alongside her
  
  

⏱️ [07:00] – Mother's Intuition & Switching OBs

• Sarah felt something was wrong during pregnancy but was dismissed
  
  

• A new ultrasound revealed her daughter's heart looked "weird"
  
  

⏱️ [10:00] – NICU Rollercoaster Begins

• Meadow intubated within hours of birth due to medication side effect
  
  

• Sarah and her husband find strength in teamwork
  
  

⏱️ [14:00] – Advice for New Heart Parents

• The overwhelm of tracking vitals and data post-discharge
  
  

• Feeling more like Meadow's nurse than her mom
  
  

⏱️ [17:00] – The Unexpected Second Surgery & Major Setbacks

• Meadow's patch failed, requiring emergency open-heart surgery
  
  

• Her chest remained open for a week due to complications
  
  

⏱️ [21:00] – A Brain Bleed Diagnosis & Mental Health Spiral

• Sarah shares how uncertainty triggered her OCD
  
  

• Emotional trauma of seeing Meadow cold, still, and open-chested
  
  

⏱️ [25:00] – Living in the ICU Full-Time

• How Sarah and her husband made the hospital their home
  
  

• The benefits of being physically present 24/7
  
  

⏱️ [28:00] – Discharge Shock & OCD Diagnosis

• Meadow is stable—but Sarah's anxiety peaks post-discharge
  
  

• Diagnosed with OCD just 10 days after coming home
  
  

⏱️ [32:00] – Healing Through Gratitude & Giving Back

• Family vacation sparks the idea for a donation
  
  

• The heart institute is named in Meadow's honor with a mural
  
  

⏱️ [36:00] – Sarah's Ongoing CHD Advocacy Work

• Advocating for the Congenital Heart Futures Act
  
  

• Raising awareness for adult congenital cardiology and research needs
  
  

⏱️ [40:00] – The Power of Medical Play

• Meadow's echos improved after doing medical play at home
  
  

• Sarah incorporates play to help her daughter cope with appointments
  
  

⏱️ [43:00] – Reflections & Advice for Other Parents

• Learning how strong her partnership with her husband is
  
  

• Why having the right support person changes everything
  
  

⏱️ [45:00] – Where to Follow Sarah & Continue the Journey

• Website, LinkedIn, Instagram, and more
  
  

Connect with Sarah Michelle Boes

📲 Website & Heart Mom Resources: www.sarahmichelleboes.com
📷 Instagram: @sarahmichelleboes
💼 LinkedIn Community & Advocacy Writing: Connect on LinkedIn

❤️ Share This Episode
Know a heart mom, Tetralogy of Fallot parent, or healthcare professional who supports families with congenital heart defects? Share Sarah's courageous story to raise awareness, foster mental health advocacy, and connect families navigating similar journeys.

🧠 This episode also sheds light on the mental health challenges parents face—especially postpartum OCD—bringing compassion and visibility to an often-misunderstood diagnosis.

🎙️ Subscribe & Review: Help other heart families and caregivers discover this story by subscribing and leaving a review.

📩 Contact us: lyndsey@childlifeoncall.com

🎧 Listen Now and Honor the Strength of Heart Moms Like Sarah

#TetralogyOfFallot #HeartMom #CHDAwareness #OCDawareness #MaternalMentalHealth #ChildLifeOnCall #ParentingThroughCHD

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