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.

A powerful episode that you may not know you needed. Bethany and Molly share from the heart in this special episode that will open you up to an awareness and understanding you may not have considered before. Grief and trauma are more common than you think across the motherhood journey, but especially in pregnancies affected by alloimmunization. This episode is intended for any listener who has experienced loss related to pregnancy and motherhood, no matter how big or small, and for those who want to better support a person who has experienced pregnancy trauma and grief. Bethany and Molly share about grief from the loss of a child, and also grief from the loss of expectations, loss of trust, loss of hope for what pregnancy and motherhood would feel like. With the help of insights from previous guests, they discuss a path toward hope and healing the wounds we suffer with loss of a child, the burden of high risk pregnancy, and how to honor our losses.

Show Themes:

• Defining trauma and grief: it’s more than pregnancy loss
• Identifying the types of trauma with this disease
• How to find support in times of need
• Specific coping tips for loss and grief
• How to support a person who has lost a child
• Finding hope in the darkest moments

Links:

• Why high risk pregnancy causes trauma
• Articles on Losing Lucy and Finding Hope
• Books on finding hope and accepting grief
  • “A Grace Disguised” by Jerry Sittser
  • “An Exact Replica of a Figment of my Imagination” by Elizabeth McCracken
  • “A Grief Observed” by CS Lewis
  • “I Will Carry You” by Angie Smith
  • “A Path through Suffering” by Elisabeth Elliott
• Effectiveness of a counseling intervention after a traumatic childbirth: a randomized controlled trial

If you or a loved one are having thoughts of suicide contact your national suicide prevention hotline https://988lifeline.org/.

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.

The onset of a strange itchiness results in the discovery that pregnant Emily Rusch is experiencing cholestasis. A lack of adequate medical attention results in the death of Emily’s baby in the NICU. Emily shares about her experience as a bereaved and newly sensitized mother as she navigates alloimmunization in her subsequent pregnancies. 

Show Themes: 

• Pregnancy related itching and cholestasis 
• Losing a child 
• Discerning and pursuing medical malpractice litigation
• Finding ways of maintaining control in difficult situations 
• Advocacy in the NICU and post-discharge for HDFN babies
• Anxiety of motherhood and the burden of being your baby’s best advocate 

References: 

• Cholestasis
• HDFN Newborn calculators and tools

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.

Bethany and Molly chat with Dr. Kara Markham, (M.D. University of Cincinnati Medical Center)  a maternal fetal medicine specialist and expert in the pregnancy management of alloimmunization and HDFN. They ask questions from the allo community, and end with Bethany and Dr. Markham in a trivia competition about HDFN. 

During this grab bag episode, Bethany, Molly and Dr. Markham discuss the following, and more:

• Whether antibody titers can be lowered
• Whether to use Rh immune globulin ("Rhogam") in early pregnancy bleeding
• Cross-matching for more than just the D antigen before transfusion
• Breastfeeding HDFN babies
• Checking titers before pregnancy
• When to do plasmapheresis and IVIG
• When to conduct MCA Doppler ultrasounds
• How to ask for different care

Resources mentioned in this episode:

• AAP guidelines for hyperbilirubinemia: LINK
• Zimmerman et al. study (with Mari) discussing the utility of weekly MCAs in discussion: LINK
• Dr. Markham's paper on women with multiple antibodies: LINK
• Sensitization Rates:
  • Buhari HA, Sagir A, Akuyam SA, Erhabor O, Panti AA. Distribution of Maternal Red Cell Antibodies and the Risk of Haemolytic Disease of the Foetus and Newborn in Sokoto Nigeria. Journal of Complementary and Alternative Medical Research. 2022 Dec 23;20(2):22-9.
  • Fan J, Lee BK, Wikman AT, Johansson S, Reilly M. Associations of Rhesus and non-Rhesus maternal red blood cell alloimmunization with stillbirth and preterm birth. International journal of epidemiology. 2014 Aug 1;43(4):1123-31.
  • 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.

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

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

Amber already had a difficult and rare blood disorder (TTP) but treatment for her unknown disease resulted in her developing antibodies, resulting in alloimmunization in her first pregnancy. A chance visit with a different doctor made the difference with her first child, but extraordinary measures were needed when she became pregnant with twins. Bethany and Molly are in for quite a tale of HDFN in already unusual circumstances. 

Show Themes

• Pregnancy with secondary disease
• Managing alloimmunization with twins
• When to get an IUT
• Making difficult decisions with twins 
• After birth in the NICU and preemie challenges 

Links

• TTP information Platelet Disorders - Thrombotic Thrombocytopenic Purpura (TTP) | NHLBI, NIH
• TTP and Pregnancy TTP and pregnancy | Blood | American Society of Hematology (ashpublications.org)
• MoM calculator Calculators & Tools - Allo Hope Foundation
• IUT outcomes with hydrops Liden  https://www.sciencedirect.com/science/article/abs/pii/S0002937801313728 
• Nystagmus Nystagmus: Definition, Causes & Treatment (clevelandclinic.org)
• NEC Necrotizing Enterocolitis (NEC): What is it, Causes & Treatment (clevelandclinic.org)

Navigating maternal alloimmunization and having a baby with HDFN is a high-stress, difficult, and sometimes dangerous experience. Sometimes you may want to make a choice to navigate around these difficulties. What are your options? Molly and Bethany discuss options available to Allo moms and families, and Bethany shares her own past experiences considering each option and even attempting adoption. Remember, at the end of the day, the decision is always yours. 

Show Themes: 

• Making the decision to get pregnant again, natural or otherwise. 
• The options:
  • In-vitro fertilization (IVF) with preimplantation genetic diagnosis (PGD) 
  • Sperm donation
  • Surrogacy
  • Adoption 
  • Embryo adoption 
• Making a personal decision despite outside pressure. 

Reference:

• First cases of IVF with PGD for Antigen selection:

PGD for the K antigen in US, 2003: https://www.sciencedirect.com/science/article/pii/S0015028203011567

PGD for the D antigen in Austria, 2005: https://academic.oup.com/humrep/article/20/3/697/2356451?login=false

• Inducing lactation protocol for adoptive moms. Induced lactation: Can I breastfeed my adopted baby? - Mayo Clinic
• The Heart Gallery https://heartgalleryofamerica.org/

More Information: 

• IUI with sperm donation: https://americanpregnancy.org/getting-pregnant/donor-insemination/ https://www.healthline.com/health/artificial-insemination#success
• IVF: https://www.nhs.uk/conditions/ivf/
• PGD: https://www.reproductivefacts.org/news-and-publications/patient-fact-sheets-and-booklets/documents/fact-sheets-and-info-booklets/preimplantation-genetic-testing/
• Surrogacy: https://my.clevelandclinic.org/health/articles/23186-gestational-surrogacy#:~:text=In%20gestational%20surrogacy%2C%20the%20embryo,starts%20with%20selecting%20a%20carrier. 
• Adoption: https://creatingafamily.org/adoption/resources/

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

Navigating the American medical system is not new to a clinician like Katie, but experiencing it as a rare disease patient is a different story entirely. This week Bethany and Molly interview Allo Hope Foundation’s Director of Development, Katie Shanahan, a nurse practitioner who became sensitized after not receiving Rh immunoglobulin (RhIG, sometimes called RHOGAM). Her alloimmunization progressed rapidly as her son developed significant HDFN in her first alloimmunized pregnancy. Katie shares stories of IUTs and NICU life in such a relatable and informative way. Also, the women discuss the process of in vitro fertilization and how preimplantation genetic diagnosis can make Katie’s next pregnancy a very different experience. 

Show Themes:

• Low titer progressing to severe disease
• First alloimmunized pregnancy
• IUT protocols and timing
• NICU experience 
• Grief and trauma
• Reflecting on daily life after an alloimmunized pregnancy
• In vitro fertilization (IVF) using preimplantation genetic diagnosis (PGD) to have an antigen negative baby

Reference

• Study about missed Rhogam https://www.sciencedirect.com/science/article/pii/S2666577821000368
• More information about cffDNA testing through the Unity Screen https://unityscreen.com/conditions-fetal-antigens/ or Sanquin Laboratories https://www.sanquin.org/products-and-services/diagnostics/non-invasive-fetal-blood-group-genotyping 
• Fetal outcomes are improved if IUTs are conducted before signs of hydrops https://www.sciencedirect.com/science/article/abs/pii/S0002937801313728 
• Use of erythropoietin (EPO) in newborns with HDFN review https://www.sciencedirect.com/science/article/abs/pii/S0378378211002337 and ongoing clinical trial https://scholarlypublications.universiteitleiden.nl/access/item%3A3284942/download

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

In this episode, Bethany and Molly focus on obstetricians and other medical professionals who play the critical role of diagnosis and initial treatment planning for alloimmunized patients. To close, Bethany and Molly play a game to try to treatment plan for alloimmunized patients based on limited information, and find a new level of appreciation for physicians. 

Show themes 

• Telling a patient they have maternal alloimmunization: what every patient wishes they could hear
• Most important initial blood tests and their implications
• Determining how quickly a patient should see a high risk doctor
• The importance of finding the right MFM, not the nearest MFM

Reference

• ACOG conference information ACOG Annual Clinical & Scientific Meeting
• How to get a Allo Hope Foundation Patient Booklet Booklets - Allo Hope Foundation
• ACOG’s list of antibodies known to cause HDFN Management of Alloimmunization During Pregnancy | ACOG
• MFM provider checklist Provider Checklist - Allo Hope Foundation
• ACOG guidelines for Late Preterm/Early Term Deliveries Medically Indicated Late-Preterm and Early-Term Deliveries | ACOG

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

Welcome back to Season 2 of The Allo Podcast. Bethany and Molly return and begin the season with Brittany Pineda, an incredible mother whose antibodies were missed in her first two alloimmunized pregnancies. After suffering the loss of her son Kristian, she shares a story of hope as she stops at nothing to get the care she needed even with extremely aggressive disease. Brittany’s story demonstrates how doctors across multiple states can come together to create a comprehensive and effective treatment plan for even the most complicated situation. 

Show Themes: 

• Red flags in treatment
• Fetal loss
• When to find second opinions
• Severe HDFN (early onset)
• Plasmapheresis and IVIG for severe disease
• Coordination of care across multiple providers
• NICU experiences
• Iron chelation therapy in HDFN newborns with extremely high iron

Links: 

Study about missed Rhogam https://www.sciencedirect.com/science/article/pii/S2666577821000368

MFM question checklist Provider Checklist - Allo Hope Foundation

Fetal outcomes are improved if IUTs are conducted before signs of hydrops https://www.sciencedirect.com/science/article/abs/pii/S0002937801313728

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