ARPKD| CHF Alliance
Regional Support

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Regional Support
 

Shannon Hall, Coordinator
Woodland Hills, CA
Phone:  818-883-2421
Email: shannon_frost@yahoo.com

First child: born in 2002, diagnosed at 32 weeks, no amniotic fluid at that time. Delivered by c-section at 36 weeks. On ventilation in the NICU. Passed away after 2 weeks.

Second child: born in 2003, diagnosed at 22 weeks during pregnancy, no amniotic fluid, underwent amnio-infusions to add fluid to amniotic sac starting at week 24. Delivered at 34 weeks by c-section. Spent 5 weeks in the NICU. 

Not transplanted, not much liver involvement. Current medications include: Captopril and Propranolol (for blood pressure), Bicitra (for acid levels), Calcium Carbonate (for
phosphorus levels), iron (for anemia), Procrit injections (for anemia).

 

   

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