S3E1: Top 5 Things to Save HDFN Babies
Bethany and Molly begin Season 3 with a review of the episodes ahead before challenging each other to list what they think are Top 5 things that would keep the most HDFN babies safe. The episode takes a turn when they reveal that they have signed themselves up for plenty more than 5 things (listed below).
Donate to AHF: https://allohopefoundation.org/get-involved/donate/
AHF Merch: https://allo-hope-foundation.myspreadshop.com/
Watch this episode on YouTube:YouTube The Essential 5
Join the AHF patient support group: https://www.facebook.com/groups/antibodiesinpregnancy
Top 5 Prenatal Things (in no particular order):
Bethany:
- Quick referral to MFM (and a list of MFMs worldwide who specialize in treating alloimmunized pregnancies)
- Preventative medications accessible to all women who need them (Rh immune globulin/RhoGAM; intravenous immune globulin, plasmapheresis for severely affected pregnancies)
- Weekly, accurate MCA scans beginning at 16-17 weeks for those with critical titers or previously affected babies; for those with early onset severe disease, starting sooner
- MFMs who collaborate with other experts and refer when necessary
- IUTs performed on time, using fetal paralytic meds, by providers with ample experience performing IUTs who know to space and attempt the last IUT at 34-35 weeks if possible
- (Honorable mention): Referring all women with positive antibody screen to Allo Hope Foundation
- (Honorable mention): Delivery at 37-38 weeks unless you are certain baby is antigen negative
Molly:
- Immediate referral to MFM after positive antibody screen
- Weekly MCA scans for critical titer/previously affected pregnancies (Weekly MCA recommendation from the group who developed MCA scans: www.academia.edu)
- Establishing global referral centers for IUTs
- An awareness that the seriousness of the disease can change at any time (e.g., low titers can jump up, first pregnancies can be severely affected - will result in closer monitoring)
- Go in if you notice a change in baby’s movement or something doesn’t feel right about your treatment or monitoring
Top 5 Neonatal Things (in no particular order):
Molly:
- Establishing neonatal care in advance of delivery (NICU/hematology in cases where pregnancy has needed treatment or high titers; pediatrician for lower titers)
- Create a fetal care record for your baby (AHF is developing this and it is not yet publicly available: e-mail us at [email protected] if you would like to use a draft version in the interim)
- Following bilirubin closely after birth and doing a trial off of lights before discharge (AAP hyperbilirubinemia guidelines: aap.org/pediatrics
- Weekly hemogobin/hematocrit after discharge until consistently trending upward or stable in a healthy range for 2+ weeks (Neonatal management from the Netherlands: research.rug.nl
- Follow the trend. Do not rely on one laboratory reading. Two readings are needed for a trend. Bili should be trending down; hemoglobin/hematocrit increasing.
Bethany:
- Continuity of care from MFM to neonatologist to pediatrician to pediatric hematologist
- Test cord blood at birth (hematocrit/hemoglobin, bilirubin, Direct Coombs Test (DCT))
- Providers who understand how hemolytic jaundice and hemolytic anemia work (as opposed to newborn jaundice and iron deficiency anemia)
- Close monitoring and aggressive treatment for hyperbilirubinemia (see AAP guidelines linked above)
- Follow-up blood tests weekly after hospital discharge