Bethany and Molly close out Amanda’s incredible survival story that began in Episode 2 of this season (Low Titer Pregnancies). After a rapid increase in titers from too low to titer to 2,048, Amanda’s referral to an MFM team went unnoticed for a few weeks. By the time she was seen, her son was very sick, but he was in the right hands with Dr. Snowise and his team. Listen to this miraculous story unfold. 

Then, Bethany and Molly reflect on AHF’s accomplishments and goals for the year and close with a powerful reflection that will touch the hearts of every listener, ending with a special dedication. 

References in this episode: 

Nipocalimab trial results: Nipocalimab

Use of cffDNA to find fetal antigen status for D, E, C, c, K, Fya: Fetal Antigen Study

ESAs for newborns with HDFN to reduce the number of transfusions: Transfusion Reduction

Donate to AHF: Allo Hope Donate

AHF Merch: Allo Hope Merch

Watch this episode on YouTube: Allo Hope on YouTube

Join the AHF patient support group: 

AHF Support Facebook

Bethany, Katie and Molly talk together about how their parenting is affected during and after the life-changing experience of an alloimmunized pregnancy.

Donate to AHF: Allo Hope Donate

AHF Merch: Allo Hope Merch

Watch this episode on YouTube: Allo Hope on YouTube

Join the AHF patient support group: 

AHF Support Facebook

Bethany and Molly interview Dr. Timothy Bahr, a neonatologist with a specialty in neonatal hematology about all of your HDFN questions for newborns. Dr. Bahr patiently answers many of the common challenges and questions in neonatal HDFN care. This is an advanced discussion of neonatal HDFN. For a primer describing disease presentation, visit our neonatal episode in Season 1.

Questions answered in this episode:

What does it entail to prepare blood for a neonatal exchange transfusion?

When and how do you use erythropoietin/darbepoetin (ESAs)?

When does an HDFN baby need to be referred to hematology after discharge?

Heel prick versus blood draw from a vein, does it matter?

Is it ok to do transcutaneous bilirubin readings (with a small device on the skin instead of blood draw)?

When is a baby cleared from HDFN?

Why can’t we have the same neonatologist throughout a baby’s NICU stay?

How can a mother politely insist on regular laboratory testing for their newborn with HDFN?

How can a mother explain to the team at birth that it’s very important to get an immediate bilirubin check at birth (through cord or placenta if possible)?

What’s the difference between neonatal and pediatric hematologist?

Publications mentioned in this episode: 

Delayed cord clamping in alloimmunization: https://www.sciencedirect.com/science/article/abs/pii/S2589933323003075

Iron overload in HDFN: https://scholarlypublications.universiteitleiden.nl/access/item%3A2881417/download#page=194

Systematic review on IVIG in the neonate for HDFN: https://fn.bmj.com/content/99/4/F325.short

Leiberman et al on IVIG in the neonate for HDFN: https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjh.18170

Darbepoetin to reduce the need for neonatal transfusion:  https://cdn.clinicaltrials.gov/large-docs/26/NCT03104426/Prot_000.pdf

Publications by Dr. Tim Bahr: https://pubmed.ncbi.nlm.nih.gov/?term=Bahr_TM

Publications by Tim’s mentor, Dr. Robert (Bob) Christensen: https://pubmed.ncbi.nlm.nih.gov/?term=Christensen_RD

Donate to AHF: Allo Hope Donate

AHF Merch: Allo Hope Merch

Watch this episode on YouTube: Allo Hope on YouTube

Join the AHF patient support group: AHF Support Facebook

Bethany and Molly interview Dr. Timothy Bahr, a neonatologist with a specialty in neonatal hematology about all of your HDFN questions for newborns. Dr. Bahr patiently answers many of the common challenges and questions in neonatal HDFN care. This is an advanced discussion of neonatal HDFN. For a primer describing disease presentation, visit our neonatal episode in Season 1.

Questions answered in this episode:

What is this research you’re doing on measuring hemolysis in a fetus from the mother’s breath?

Can you still have delayed cord clamping in alloimmunized pregnancies? 

Can I hold my baby for a few minutes before they are taken to the NICU?

Why are HDFN babies offered iron so often?

How quickly does a baby’s bilirubin level improve (go down) after an exchange transfusion?

What is your opinion on using IVIG on the neonate for HDFN, and when would you do it?

Publications mentioned in this episode: 

Delayed cord clamping in alloimmunization: https://www.sciencedirect.com/science/article/abs/pii/S2589933323003075

Iron overload in HDFN: https://scholarlypublications.universiteitleiden.nl/access/item%3A2881417/download#page=194

Systematic review on IVIG in the neonate for HDFN: https://fn.bmj.com/content/99/4/F325.short

Leiberman et al on IVIG in the neonate for HDFN: https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjh.18170

Darbepoetin to reduce the need for neonatal transfusion:  https://cdn.clinicaltrials.gov/large-docs/26/NCT03104426/Prot_000.pdf

Publications by Dr. Tim Bahr: https://pubmed.ncbi.nlm.nih.gov/?term=Bahr_TM

Publications by Tim’s mentor, Dr. Robert (Bob) Christensen: https://pubmed.ncbi.nlm.nih.gov/?term=Christensen_RD

Donate to AHF: Allo Hope Donate

AHF Merch: Allo Hope Merch

Watch this episode on YouTube: Allo Hope on YouTube

Join the AHF patient support group: 

AHF Support Facebook

Bethany and Molly build on last season’s discussion of grief to expand to anxiety, stress, depression and PTSD during and after the experience of a high risk pregnancy. They talk through how these challenges present themselves, how they feel to an alloimmunized mother, and specific coping mechanisms. The close with a positive segment called “what’s in the bag”, where moms submitted lists of items that they packed for their delivery, IUT, and NICU visits.

Mental health burden in alloimmunized pregnancy: https://www.ajog.org/article/S0002-9378(23)01145-6/pdf

Donate to AHF: Allo Hope Donate

AHF Merch: Allo Hope Merch

Watch this episode on YouTube: Allo Hope YouTube

Join the AHF patient support group: 

AHF Support Facebook

Bethany, Molly and Katie talk through all aspects of Rh Immune Globulin (RhOGAM, WinRho, RhIG). They cover the history, how it’s made, its safety profile, understanding the RhIG shortage, and public health controversy. The women provide information for Rh negative women who are deciding whether or not to accept the RhIG injection for a pregnancy. 

Do you live in the U.S. and have Anti-D antibodies? You could be paid more than $100 per plasma donation (up to twice a week) with reimbursement for travel to a donation center. E-mail us at [email protected] and Bethany, Katie or Molly will respond to confirm your potential eligibility and refer you directly to our personal contact at Kedrion. 

Learn about Kedrion, the manufacturer of RhoGAM: https://www.kedrion.com/therapies/

RhoGAM website: https://www.rhogam.com/

Donate to AHF: Allo Hope Donate

AHF Merch: Allo Hope Merch

Watch this episode on YouTube: Allo Hope on YouTube

Join the AHF patient support group: 

AHF Support Facebook

Bethany, Molly and Katie talk through differences in HDFN care continent by continent. They review country-specific research, practice patterns, and patient stories. 

Donate to AHF: Allo Hope Donate

AHF Merch: Allo Hope Merch

Watch this episode on YouTube: Allo Hope on YouTube

Join the AHF patient support group: AHF Support Facebook

Cross-matching for Kell in Netherlands: Luken JS, Folman CC, Lukens MV, Meekers JH, Ligthart PC, Schonewille H, Zwaginga JJ, Janssen MP, van Der Schoot CE, van der Bom JG, de Haas M. Reduction of anti‐K‐mediated hemolytic disease of newborns after the introduction of a matched transfusion policy: a nation‐wide policy change evaluation study in the Netherlands. Transfusion. 2021 Mar;61(3):713-21. 

Iceland study: Gudlaugsson B, Hjartardottir H, Svansdottir G, Gudmundsdottir G, Kjartansson S, Jonsson T, Gudmundsson S, Halldorsdottir AM. Rhesus D alloimmunization in pregnancy from 1996 to 2015 in Iceland: A nation‐wide population study prior to routine antenatal anti‐D prophylaxis. Transfusion. 2020 Jan;60(1):175-83. 

South Korea study: Yang EJ, Shin KH, Song D, Lee SM, Kim IS, Kim HH, Lee HJ. Prevalence of unexpected antibodies in pregnant Korean women and neonatal outcomes. The Korean Journal of Blood Transfusion. 2019 Apr 30;30(1):23-32. 

Saudi Arabia study: Alkhaibary A, Ali M, Tulbah M, Al-Nemer M, Khan RM, Al Mugbel M, Al Sahan N, Hassounah MM, Alshammari W, Kurdi WI. Complications of intravascular intrauterine transfusion for Rh alloimmunization. Annals of Saudi Medicine. 2021 Nov;41(6):313-7.

Iran study: Niroomanesh S, Dadgar S, Shirazi M, Sharbaf FR, Golshahi F. Neonatal outcomes of Rh alloimmunization pregnancy treated with intrauterine transfusion. Med. Sci.. 2020;24(101):57-65.

Japan study: Mizuuchi M, Murotsuki J, Ishii K, Yamamoto R, Sasahara J, Wada S, Takahashi Y, Nakata M, Murakoshi T, Sago H. Nationwide survey of intrauterine blood transfusion for fetal anemia in Japan. Journal of Obstetrics and Gynaecology Research. 2021 Jun;47(6):2076-81.

Canada study: Jackson ME, Baker JM. Hemolytic disease of the fetus and newborn: historical and current state. Clinics in Laboratory Medicine. 2021 Mar 1;41(1):133-51.

Brazil study: Pares DB, Pacheco GH, Lobo GA, Araujo Júnior E. Intrauterine Transfusion for Rhesus Alloimmunization: A Historical Retrospective Cohort from A Single Reference Center in Brazil. Journal of Clinical Medicine. 2024 Feb 28;13(5):1362.

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