Bethany’s story continues with the growth of her family, learning from the mistakes made in Lucy’s treatment for severe HDFN. After Bethany becomes pregnant she goes to great lengths to keep her babies safe, moving out of state, undergoing frequent plasmapheresis and IVIG, many IUTs, NICU time, and post-birth transfusions. While Bethany’s proactive pursuit of treatment leads to the delivery of 3 healthy children, the loss of Lucy motivates her toward activism and the founding of the Allo Hope Foundation. 

Episode themes: 

• Educating yourself 
• Finding an excellent doctor
• Pursuing other family options (sperm donation, adoption, preventative treatment)  
• Preventative treatments for severe HDFN
• The Rainbow Baby
• Making the decision to continue
• Unexpected deliveries 
• One more time
• The Blog: Losing Lucy and Finding Hope
• The Allo Hope Foundation 

Terminology used in this episode: 

Cell-Free Fetal DNA (cffDNA): This noninvasive test uses the fetal DNA that is found floating in maternal circulation to check the fetal red cell antigen status. It requires a blood sample from the mother. cffDNA can be used for pregnancies complicated by anti-Kell, anti-D, anti-C, anti-c, anti-E, and anti-e antibodies.

Intravenous Immunoglobulin (IVIG): An infusion of mostly IgG immunoglobulins that is made by extracting the immunoglobulins from the plasma of ~1,000 donors. It is thought to lessen the mother’s antibody response and delay fetal anemia. It can also be given after birth to newborns to treat hyperbilirubinemia. It may affect the efficacy of live virus vaccines for up to a year after administration.

Plasmapheresis: A procedure where the blood is removed from the mother, the antibody-rich plasma is removed, and blood cells are returned. This can decrease the antibody titer.

Allo Hope Terminology Library https://allohopefoundation.org/library/terminology/

Links mentioned in this episode: 

Losing Lucy and Finding Hope blog: https://losinglucyandfindinghope.com/

HDFN Newborn Care Booklet: https://allohopefoundation.org/wp-content/uploads/2022/08/AHF-Newborn-Booklet.pdf

Prenatal decision tree https://allohopefoundation.org/library/prenatal-tree/

Post birth testing https://allohopefoundation.org/library/infant-testing/

Provider letter: https://allohopefoundation.org/wp-content/uploads/2022/08/Letter-to-Providers-Final.docx

Research for this episode provided by Bethany Weathersby and Molly Sherwood of the Allo Hope Foundation. Find more information at https://allohopefoundation.org

The Allo Podcast is produced and edited by https://www.mediaclub.co