The Allo Podcast

On listener request, Bethany and Molly dedicate an episode to the friends and family of the alloimmunized mother. They reintroduce themselves, explain alloimmunization and HDFN and what to expect from an alloimmunized pregnancy, and give concrete advice on how to support someone navigating this disease. 

Read a description of HDFN on the National Organization for Rare Disorders website written by AHF: NORD: HDFN

Mental health burden in alloimmunized pregnancy: AJOG: Mental Health and HDFN

Donate to AHF: Donate

AHF Merch: Merch

Watch this episode on YouTube: Allo YouTube

Join the AHF patient support group: Facebook Group

www.allohopefoundation.org

In true Bethany and Molly fashion, the hosts open with laughing at inappropriate stories and end in happy tears sharing the most heartfelt moments of love and appreciation for each other and this special community. One Tiny Thing is a compilation of patient-provided “tiny things” that happened to them and changed everything. 

Bethany and Molly discuss listener answers to these special questions:

What is one tiny thing that could have saved your HDFN baby’s life? 

What is one tiny thing that did save your HDFN baby’s life? 

What is one tiny thing that someone said to you that changed your perspective on this experience? 

Donate to AHF: https://allohopefoundation.org/get-involved/donate/

AHF Merch: https://allo-hope-foundation.myspreadshop.com/

Watch this episode on YouTube: allohope youtube

Join the AHF patient support group: 

https://www.facebook.com/groups/antibodiesinpregnancy

Bethany and Molly return to record with Dr. Markham, a well-loved maternal fetal medicine specialist who has treated many HDFN babies. They cover many questions submitted by allo moms including: 

Does a high titer or low titer mean the baby is antigen positive or negative? 

If mom’s antibodies are too low to titer, what does that mean for the rest of the pregnancy? 

Is it too risky to pursue another pregnancy with a titer of 2,048? 

Is it safe to have an external cephalic version (ECV) for breech babies in alloimmunized pregnancy? 

What is the best mode of delivery for an alloimmunized pregnancy? 

When should we deliver if the pregnancy didn’t need IUTs? If the pregnancy is low titer? 

Can antibodies cause hydrops or death without a high MCA Doppler ultrasound first? 

How has a patient made you, the doctor, feel valued? 

Can obesity make IUTs more difficult? 

The women close with some patient-submitted stories of the most shocking thing that happened during an IUT, with Dr. Markham sharing a hilarious one of her own. 

Delivery timing 37-38 weeks:  ACOG Medically Indicated Late Term and Early Preterm Deliveries. 

Donate to AHF: https://allohopefoundation.org/get-involved/donate/

AHF Merch: https://allo-hope-foundation.myspreadshop.com/

Watch this episode on YouTube:

Join the AHF patient support group: 

https://www.facebook.com/groups/antibodiesinpregnancy

S3E2: Low Titer Alloimmunized Pregnancies 

Over half of alloimmunized pregnancies begin with a low antibody titer, and a portion stay low throughout the pregnancy. Others begin low and later rise to critical levels. This episode is dedicated to management of the low titer pregnancy and how to anticipate a potential change in disease trajectory if titers increase. 

Bethany and Molly include management recommendations and stories submitted by low titer moms before transitioning to a special interview with allo mom Amanda, whose pregnancy began as a low titer pregnancy before taking a surprising turn. We meet Amanda in this episode before resuming the second half of her HDFN journey in this season’s final episode, Incredible HDFN Survival Stories. 

Key aspects of low titer disease management: 

1. Determine baby’s antigen status if possible. If not possible, monitor as if antigen positive. If the baby is certainly antigen negative, the pregnancy proceeds as normal and there is no need to do anything further beyond standard pregnancy care
2. Establish care with an MFM and determine up front if this MFM is able to do IUTs on your baby if your disease progresses. If not, have a referral plan set up
3. Check titers every 4 weeks in the first and second trimester, then every 2 in the third trimester
4. Weekly fetal assessment beginning at 32 weeks (Nonstress tests and biophysical profiles).
5. Delivery at 37-38 weeks
6. Follow all neonatal recommendations (establish a plan with pediatrician in advance if possible b/c they are likely to be doing the follow-up care) - bilirubin consistent with AAP guidelines which may include daily testing after discharge for a week or more, and hemoglobin/hematocrit weekly for the first six weeks and until hemoglobin/hematocrit increases or is in stable normal range for two consecutive weeks

Delivery timing 37-38 weeks:  ACOG Medically Indicated Late Term and Early Preterm Deliveries. ACOG Early Delivery Guidlines

AAP guidelines for hyperbilirubinemia after birth: AAP on Hyperbilirubinemia

Undetectable antibodies progressing to severe disease: Dajak S, Stefanović V, Čapkun V. Severe hemolytic disease of fetus and newborn caused by red blood cell antibodies undetected at first‐trimester screening (CME). Transfusion. 2011 Jul;51(7):1380-8.  Undetected Antibodies Research

Amanda’s video blog of her alloimmunized pregnancy journey: Amanda's Video Blog

Donate to AHF: https://allohopefoundation.org/get-involved/donate/

AHF Merch: https://allo-hope-foundation.myspreadshop.com/

Watch this episode on YouTube: https://youtu.be/AA9J1pHPNUA

Join the AHF patient support group: 

https://www.facebook.com/groups/antibodiesinpregnancy

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:

1. Quick referral to MFM (and a list of MFMs worldwide who specialize in treating alloimmunized pregnancies)
2. Preventative medications accessible to all women who need them (Rh immune globulin/RhoGAM; intravenous immune globulin, plasmapheresis for severely affected pregnancies)
3. 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
4. MFMs who collaborate with other experts and refer when necessary
5. 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
6. (Honorable mention): Referring all women with positive antibody screen to Allo Hope Foundation 
7. (Honorable mention): Delivery at 37-38 weeks unless you are certain baby is antigen negative

Molly: 

1. Immediate referral to MFM after positive antibody screen
2. Weekly MCA scans for critical titer/previously affected pregnancies (Weekly MCA recommendation from the group who developed MCA scans: www.academia.edu) 
3. Establishing global referral centers for IUTs
4. 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)
5. 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:

1. Establishing neonatal care in advance of delivery (NICU/hematology in cases where pregnancy has needed treatment or high titers; pediatrician for lower titers)
2. 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)
3. Following bilirubin closely after birth and doing a trial off of lights before discharge (AAP hyperbilirubinemia guidelines: aap.org/pediatrics
4. 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
5. 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: 

1. Continuity of care from MFM to neonatologist to pediatrician to pediatric hematologist
2. Test cord blood at birth (hematocrit/hemoglobin, bilirubin, Direct Coombs Test (DCT))
3. Providers who understand how hemolytic jaundice and hemolytic anemia work (as opposed to newborn jaundice and iron deficiency anemia)
4. Close monitoring and aggressive treatment for hyperbilirubinemia (see AAP guidelines linked above)
5. Follow-up blood tests weekly after hospital discharge

The Allo Podcast is back for a third season! This season features:

• New stories of survival in the most critical of medical situations.
• Conversations with MFM Dr Kara Markham and Neonatal Specialist Dr Tim Bahr.
• New information about medical advancements in the treatment of HDFN.
• A live gender reveal from one of the podcast’s previous guests.
• And, of course, Bethany Weathersby and Molly Sherwood are back to brighten your day.

New episodes begin streaming on Tuesday November 5th. So, shine up your earbuds, get ready to be inspired and empowered, and follow the Allo Podcast wherever fine podcasts are streamed. Or, if you’re looking for some smiling faces and the occasional teary eye, join us over on YouTube. 

Over the Past 2 seasons Bethany and Molly have discussed the lack of consistent, accessible treatment and the current ways we can treat an alloimmunized mom and her children with HDFN, but on this episode with Dr. Moise we discuss a bright future. Can a simple carbon monoxide reader replace a needle procedure to monitor for anemia? Can a drug stop antibodies from crossing the placenta entirely? We look to the cutting edge of medical treatment for disease that brought these women together. 

Guest: Dr. Kenneth J Moise Jr, M.D. Dell Medical School – UT Austin
Director, Comprehensive Fetal Care Center Dell Children’s Medical Center

DONATE TO AHF AFRICA

Episode Topics: 

• Severity of subsequent alloimmunized pregnancies
• IVIG and importance of timely treatment
• Ideal newborn management of HDFN
• Antibody-specific differences in newborn HDFN presentation
• Erythropoietin to prevent or delay need for neonatal transfusion
• Cell free fetal DNA (cffDNA) (Billion To One’s Unity Screen) for fetal antigen typing instead of amniocentesis
• Exhaled carbon monoxide to monitor for newborn anemia
• Nipocalimab trial update
• State of alloimmunization/HDFN in Africa
• What can you do to help?

Links: 

• Leiden paper on disease severity in subsequent alloimmunized pregnancies
• PETIT trial on IVIG
• Leiden paper on neonatal management of HDFN
• Erythropoietin for newborns with HDFN to delay or reduce need for transfusion
• cffDNA for fetal antigen status
• Utah study on carbon monoxide to detect hemolysis
• Nipocalimab for HDFN:
  • Clinical trial listing (continuously updated)
  • Phase 2 results
  • AHF/Dr. Moise live webinar with allo moms on nipocalimab
• Ethiopia study
• Worldwide Initiative for the Eradication of Rh Disease
• Rhesus Solution Initiative (Nigeria)
• DONATE TO AHF AFRICA
• General donation to AHF

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 Media Club.

Continuing from last episode, Bethany and Molly listen to Rose Murage’s story. As Rose navigates the final few steps to the United States, she discovers that both the lack of quality care in Kenya and the trauma of her previous pregnancies will follow her to America. But tears of sorrow become tears of joy when she is finally in the hands of a provider who can offer empathetic, quality care, and the world and the podcast welcomes baby Lucas. 

Episode themes: 

• Traveling to another country to receive care for alloimmunization/HDFN
• Severe HDFN 
• MCA Doppler ultrasound to monitor for fetal anemia 
• Intrauterine blood transfusion (IUT) 
• Emergency c-section
• NICU experience with HDFN baby
• Welcoming a miracle while coping with the grief of previous loss
• Hope

What can you do as a listener?

• Please donate to the AHF Africa program. An antibody screen in Kenya costs $5, but most families cannot afford this additional expense. We need $12,000 a year to sustain this program. Learn more about what we do with your donations and make a donation here. Anyone who contributes a $50/month recurring donation will receive quarterly e-mail updates directly from Rose, AHF’s Ambassador to Kenya.
• Join O Negative Foundation Kenya if you live in Kenya and have a negative blood type.
• Follow or donate to Rhesus Solution Initiative, a Nigerian NGO dedicated to educating women about their blood type and providing access to Rh immune globulin to prevent alloimmunization.

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.

This special two-part episode of the Allo Podcast is intended for our regular listeners and for those who are unfamiliar with alloimmunization. A beautiful testament to the grace of humanity, Bethany and Molly sit on the floor of Molly’s bedroom with guest Rose Murage, a native Kenyan with a harrowing pregnancy journey. Rose shares the pain of watching her first two children die tragic, inexplicable deaths. But when Rose reached out to Bethany for help, a new journey began to diagnose Rose with red cell alloimmunization and find a way towards a living baby in a country with limited resources. Join us for the first part of Rose’s story as she tells of her life in Kenya, the short physical lives of Alexis and Max, the obstacles she overcame to seek treatment, and the gift of an American doctor and a network of activists to heal a family.

Definitions for the show notes as they appear in the episode: 

• Rhogam shot/Rh immune globulin/Anti-D injection: An injection for Rh negative women to help prevent them from developing Anti-D antibodies during pregnancy. This needs to be administered after pregnancy bleeding, at 28 weeks, and after birth. Access to this injection is limited in developing countries and often not affordable for the average family.
• ICT test: Indirect Coombs Test, a blood draw on the mother to see if she has red cell antibodies (alloimmunization) which can attack her baby's blood and cause HDFN. This is also called an antibody screen. 
• DCT test: Direct Coombs Test, a blood test that is run on babies after birth to see if mom's antibodies are attaching to their blood cells. A baby with a positive DCT usually means they have hemolytic disease of the fetus and newborn (HDFN).
• MCA Doppler scan: Specialized ultrasounds that detect fetal anemia. This is the best way to monitor a baby at risk for HDFN to determine if they need an intrauterine blood transfusion to treat their anemia. An MCA value of 1.0 is normal, and 1.5 means the baby is anemic and needs a transfusion. In Kenya, very few hospitals can conduct these MCA Doppler ultrasounds accurately.
• IUT: Intrauterine transfusion, currently the only way to treat a baby with HDFN in utero. This is a blood transfusion into the baby's umbilical vein using a long needle through the mother's abdomen.
• Rhesus positive: This means that a person has a positive blood type (D antigen positive). Rose's body is Rhesus negative and makes antibodies to Rhesus positive (D antigen positive) blood. Any donors for her baby would need to be Rhesus negative so that her antibodies do not destroy the newly donated blood.

What can you do as a listener?

• Please donate to the AHF Africa program. An antibody screen in Kenya costs $5, but most families cannot afford this additional expense. We need $12,000 a year to sustain this program. Learn more about what we do with your donations and make a donation here. Anyone who contributes a $50/month recurring donation will receive quarterly e-mail updates directly from Rose, AHF’s Ambassador to Kenya.
• Join O Negative Foundation Kenya if you live in Kenya and have a negative blood type.
• Follow or donate to Rhesus Solution Initiative, a Nigerian NGO dedicated to educating women about their blood type and providing access to Rh immune globulin to prevent alloimmunization.

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 Media Club.

Agne’s experience of growing up in the Soviet Union has left her with a vague medical record that doesn’t explain her severe antibody titer affecting her pregnancies. Bethany and Molly experience the culture shock of Agne’s uncommon options following the loss of her first child to a failed intrauterine blood transfusion, followed by two more unthinkable losses as she searches for the information she needs to have her rainbow baby even when it feels impossible.

Show Themes: 

• Alloimmunization and HDFN treatments in Eastern Europe 
• Parental antigen and antibody status testing 
• Conflicting issues between social views and medical treatment 
• Social customs on discussing loss and pregnancy complications 
• Experiencing the Nipocalimab trial in Belgium 

References:

• Nipocalumab trial Phase 2 results
• Nipocalimab trial Phase 3 enrollment update

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 Media Club.