"Life is always in the mix of joy and grief, and those things coexist. But this is how I’m going to deal with it." - Joanne De Simone In this episode of the Child Life On Call Podcast, Joanne De Simone shares her journey as a parent raising two sons with...
Episode 146 | Caryn’s Story – A daughter with ALCAPA Congenital Heart Defect
Podcast Show Notes
Caryn shares about her daughter Elaina developing ALCAPA, a congenital heart defect, and how they found out weeks after an uneventful pregnancy. Caryn will shed light on how she coped with Elaina’s diagnosis and how she strongly advocated for her along the way. You will feel moved by Caryn’s fierce love and commitment to her daughter
[2:25] Katie’s takeaways on numbing cream
[7:22] Caryn introduces her family
[10:16] Experiencing a wide variety of symptoms
[12:56] A visit to the emergency room
[15:16] Diagnosis of ALCAPA and emergency surgery
[18:40] Caryn was not able to go home to get belongings
[19:14] Thoughts about getting a second opinions
[20:56] Elaina quit eating after her first surgery
[21:58] Advocating for a transfer to a different hospital
[23:13] Elaina needed ventilation to recover from her first surgery
[23:47] Getting devastating news that Elaina may not pull through a repeat surgery
[25:00] She struggled with feeding difficulties
[27:29] Honesty and Empathy
[29:39] Crash course on the anatomy of the heart
[33:13] The early diagnosis was a better outcome for Elaina
[34:50] Caryn shares statistics about ALCAPA
[35:49] PTSD symptoms arise while Elaina is hospitalized
[36:57] Covid + Thanksgiving
[39:22] Everyone has their own pain
[40:37] Taking turns going home
[42:15] How she turned her own worry into company
[44:33] Why she wrote My Scar is Beautiful
[46:39] What Elaina has taught Caryn
[47:40] Heartfelt words of encouragement from one medical parent to another
Connect with Caryn
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Parents, download our free parent starter kit.
When you download our starter kit, you’ll learn how to:
- Give medicine to your child without it becoming a wrestling match
- Prepare your child (and yourself) for a shot so they can feel less anxious
- Create and use a coping plan for any medical appointment or procedure
The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.
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Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.
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