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

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 info@allohopefoundation.org 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.

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

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

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

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

• Amazing new stories of resilience, heartbreak, and survival told by the Allo moms from the US, Europe, and Africa.
• Conversations with top MFM's in the field including Dr. Kara Markham and Dr. Ken Moise.
• New information about medical advancements in the treatment of HDFN.
• Exclusive data from research conducted by the Allo Hope Foundation
• And, of course, Bethany Weathersby and Molly Sherwood are back to brighten your day.

New episodes begin streaming on Tuesday September 12, 2023. So, shine up your earbuds, get ready to be inspired and empowered, and follow the Allo Podcast wherever fine podcasts are streamed.

Bethany and Molly discuss the history of HDFN and Alloimmunization. From the 1600s with a strange record of infant mortality to early attempts to hit an umbilical cord with a needle using only an x-ray and paper clips. They tell the story of the true state of disease management today using direct quotes from affected families. They also look to the future with hopes of new preventative medicines that could change the treatment of HDFN. 

Episode themes: 

• The first reported case of HDFN
• Rhesus monkey tests and the Rh factor 
• Early treatments for fetal anemia 
• William Liley’s first treatments 
• The discovery of the middle cerebral artery (MCA) and relationship with anemia 
• Rhesus immune globulin (RhoGAM)
• Using Cell Free Fetal DNA to test for Alloimmunization 
• The prediction of a medication to block the antibody 
• Soapbox moment: the state of this disease today

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

Guests: Dr. Ken Moise https://partnersincare.health/directory/kenneth-moise

Links mentioned in this episode: 

The History of HDFN (timeline on AHF website): https://allohopefoundation.org/library/history/

Mari’s article on MCA Dopplers: https://www.nejm.org/doi/full/10.1056/nejm200001063420102

Dr. Moise’s editorial from New England Journal of Medicine: https://www.nejm.org/doi/full/10.1056/NEJMe068071

Nipocalimab trial:  https://clinicaltrials.gov/ct2/show/NCT04951622

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

Okay, we’ve had the podcast baby, now what? Molly and Bethany discuss the medical measures needed to keep the baby healthy after they join us on the other side. As our new patient is born we have a new series of information and tips to keep baby safe until baby is finally cleared of mom’s antibodies, usually by 12 weeks of age. 

Episode themes: 

• Why baby is still affected by mom’s antibodies after birth
• Two major effects of HDFN: hyperbilirubinemia and anemia
• Monitoring bilirubin via blood test or photo sensor.
• Transfusions: exchange, top-up and IVIG, and tips if your baby needs one
• Delayed onset anemia: why a baby with no symptoms at birth needs to be monitored
• Weekly blood tests for reticulocyte count and hematocrit/hemoglobin
• When to treat anemia and hyperbilirubinemia
• When we’re done with HDFN
• HDFN babies do not need iron supplements: request ferritin tests before care teams give iron supplements
• Special considerations in babies who received intrauterine transfusions (IUTs) in utero
• Baby’s pre-birth medical history is not automatically recorded in baby’s medical record

Terminology used in this episode: 

• Bilirubin: The substance formed when red blood cells are broken down. Bilirubin is part of the bile, which is made in the liver and is stored in the gallbladder. The abnormal buildup of bilirubin causes jaundice.
• Exchange transfusion: A blood transfusion in which the patient's blood or components of it are exchanged with (replaced by) other blood or blood products.
• Hematocrit: The ratio of the volume of red blood cells to the total volume of blood
• Hemoglobin: A protein inside red blood cells that carries oxygen from the lungs to tissues and organs in the body and carries carbon dioxide back to the lungs.
• Hyperbilirubinemia: High levels of a product produced when red blood cells are broken down. In the case of alloimmunization, they are broken down by the mother’s antibodies. Excess bilirubin can cause jaundice, kernicterus, hearing loss, tooth enamel problems, permanent brain damage or even death if left untreated.
• Kernicterus: Bilirubin-induced permanent brain damage as a result of high levels of bilirubin, also called bilirubin encephalopathy. Signs of Kernicterus are considered a medical emergency and include: a high pitched cry, arched back, and an inconsolable infant.
• Reticulocyte count (Retic): This is a measure of how many immature blood cells are in the bloodstream. These are future RBCs and can give an idea of how quickly a baby is making new blood to replace what the antibodies are destroying. It can be used to decide if a top up transfusion is needed or if another check in a couple days will suffice.
• Top-up transfusion: Adding blood or blood products without removing any blood, these are also known as simple transfusions.

Linked mentioned in this episode: 

AAP hyperbilirubinemia guidelines:  

https://www.aap.org/en/patient-care/hyperbilirubinemia/

AAP treatment chart for hyperbilirubinemia in HDFN babies (also available within the overall guidelines linked above): 

https://publications.aap.org/view-large/figure/10539368/PEDS_2022058859_f3.tif

Get free HDFN Prenatal and Postnatal information booklets: 

https://allohopefoundation.org/library/booklets/

Untreated hyperbilirubinemia leads to kernicterus in 25% of cases, see HDFN review of current trends and treatments:

https://pubmed.ncbi.nlm.nih.gov/34675752/

Post-birth guidelines from Netherlands: Smits-Wintjens, V. E. H. J. (2012, February 15). Neonatal management and outcome in red cell alloimmunization.

https://scholarlypublications.universiteitleiden.nl/access/item%3A2894186/view

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

For more on tests during pregnancy, see our prenatal testing guide at https://allohopefoundation.org/library/prenatal-testing/

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

Eventually, a pregnancy story becomes a birth story. Molly and Bethany cover the various things to expect with an Alloimmunized birth, and talk about the many things you can do to prepare for your birth, and some choices you can make to have your birth experience be your own. 

Episode themes:

• Delivery timing and how IUTs affect your delivery time
• Why home births are not indicated
• What to look for in a NICU
• What tests to request at delivery
• Requesting crossmatched blood, just in case 
• Maintaining your empowerment  
• Creating a birth plan 
• What to pack for your delivery
• How to give birth. No, really. 

Terminology:

• Direct Antiglobulin Test (DAT): This test looks for antibodies that are bound to red blood cells and is typically done on infants. With specific antibodies, this test can be negative even when the baby is still affected and needing treatment. 
• Bilirubin (Bili): A product created when red blood cells are broken down. In the case of alloimmunization, they are broken down by the mother’s antibodies. Excess bilirubin can cause jaundice, kernicterus, hearing loss, tooth enamel problems, permanent brain damage or even death if left untreated.
• Complete Blood Count (CBC): This is a laboratory test that checks the levels of a variety of blood cells and includes hemoglobin, hematocrit, neutrophil count, reticulocyte count, and more.

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

Guests: Dr. Thomas Trevett http://www.georgiaperinatal.com/dr-trevett/

Links mentioned in this episode: 

ACOG Medically Indicated Late-Preterm and Early-Term Deliveries (guideline on delivery timing): https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2021/07/medically-indicated-late-preterm-and-early-term-deliveries

Freya Positive Birthing App: https://thepositivebirthcompany.co.uk/freya-hypnobirthing-app

Request a patient booklet: https://allohopefoundation.org/library/booklets/

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/

Most episodes of the Allo Hope Podcast discuss the effects of alloimmunization on mom and baby, but on this episode we talk to partners. Bethany and Monique interview eachother’s partners and discover how they found out, what they felt, and how they supported their wives and children during the difficult pregnancies. Visit Bethany and Monique’s individual story episodes to learn more about their alloimmunization journey.

Episode themes: 

• The discovery of a partner’s struggle 
• How to advocate for your partner and baby’s care 
• Dealing with loss and what it means for your partner, family, and future 
• Searching for stability in a time of unexpected issues 
• Options for dad 
• What to do in the NICU

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

Guests: David Kinney and Josh Weathersby 

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

The Allo Podcast is produced and edited by 

https://www.mediaclub.co/

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

In our quest to share the experience of Alloimmunized moms, Bethany interviewed Monique Kinney, a contributor to the Allo Hope Foundation. Monique founded the premier Facebook support group for Alloimmunized moms before the Allo Hope Foundation was started in 2019. 

Episode themes: 

• Monique’s proactive discovery of her Anti-E antibody status
• The Bad Number
• Advice for post-birth
• Mid-Pregnancy Postpartum Anxiety
• Advocacy against hospital policy
• Being your baby’s medical record

Terminology used in this episode: 

• Antibody Evanescence: The waning of antibodies over time following an exposure to the immunized antigen. Once a patient develops antibodies, the antibodies never truly disappear. Fewer than 30% of antibodies are estimated to be detectable by current methods.
• Antibody Boostering: When an antibody undetectable during cross-matching is suddenly detectable again. Antibody boostering happens in patients who were earlier found to have alloantibodies, but then experienced antibody evanescence. Boostering can result in the antibodies coming back in an anamnestic manner, including hyperhemolysis.

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

Guests: Monique Kinney 

Links mentioned in this episode: 

Facebook support group: https://www.facebook.com/groups/antibodiesinpregnancy

Mari et al. paper discussing 12% false positive rate for MCA scans: https://www.nejm.org/doi/full/10.1056/nejm200001063420102

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

The Allo Podcast is produced and edited by 

https://www.mediaclub.co/

Why do we have to advocate so hard for adequate care for Maternal Alloimmunization? This disease is so rare, many maternal fetal medicine doctors (MFMs) simply do not treat it often. Finding the right doctor with experience in this disease can change the outcome of your pregnancy experience and the health of your baby. 

Episode topics: 

• Common barriers to good care
• Doctor’s reflection on the patient/provider relationship
• Understanding your choices with an MFM 
• Establishing mutual trust with your Doctor 
• What to look for in an MFM
• Your body, your baby, your care
• The things to look out for in a doctor 

Green Flags:

• Doctor offers cell free fetal DNA tests if appropriate
• Doctor discusses all appropriate treatment options with you in a collaborative way
• Planning for possibilities of IUTs
• Doctor increases their own education on alloimmunization if needed
• Doctor follows up after birth 
• Provides ultrasound 24 hours after IUT 
• Gives paralytic to baby in IUT
• IUT in an operating room
• Doctor communicates with post birth care providers 
• Cares about your emotional and mental well being 

For a full list developed and approved by our Patient and Medical advisory boards, check out AHF’s Excellent Care Checklist: https://allohopefoundation.org/wp-content/uploads/2022/10/Alloimmunization-HDFN-Excellent-Care-Checklist.pdf

Bethany’s questions for Dr. Trevett (*note, this is an example that is relevant specifically to Bethany’s pregnancy. Your questions may be different depending on your disease and access to care):

1. Are you willing to collaborate with other doctors if needed for my care throughout my pregnancy?
2. Are you on board with this treatment plan?
   1. Permacath surgery at 8 or 9 weeks
   2. Plasmapheresis and IVIG at 9 or 10 weeks
   3. Weekly IVIG infusions until baby's first IUT
   4. cffDNA test for baby's antigen status at 14 weeks
   5. weekly MCA Doppler scans starting by 15 weeks

  3.  How comfortable are you with the IUT procedure?

  4.  How many IUTs do you usually perform per year?

  5.  What is your success rate?

  6.  What is the earliest IUT you have ever performed?

  7.  Walk me through your IUT procedure.

  8.  Do you use IPT, IVT or a combination of both for your IUTs?

  9.  Do you perform IUTs in an operating room?

 10. Do you sedate and paralyze the baby during an IUT?

 11. Do you provide IV sedation for the mother during an IUT?

 12.  What kind of monitoring do you provide after an IUT?

 13.  Do you scan the baby 24 hours after every IUT?

 14.  What gestation do you consider viable?

 15.  When do you administer steroids to the baby?

 16.  Do you usually give Phenobarbital to mother leading up to delivery for liver development?

 17.  Who handles my normal OB care? You or an OBGYN? Who delivers?

 18.  When do you usually do the last IUT?

 19.  When do you usually want patients to deliver?

 20.  How many alloimmunized patients do you usually see per year?

 21.  Does your hospital have a level 4 NICU?

 22.  Do you think my next baby would survive? Have the same chance of survival as my previous allo pregnancies?

 23.  Is there a Ronald McDonald House nearby?

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

Guests: 

Dr. Ken Moise https://partnersincare.health/directory/kenneth-moise

Dr. Thomas Travett http://www.georgiaperinatal.com/dr-trevett/

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/

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

Host and Allo Hope Foundation founder Bethany Weathersby tells the story of Lucy, her daughter, who passed from HDFN. Her loss sparked the blog Losing Lucy and Finding Hope, which grew into a resource for alloimmunized mothers seeking help and support. Lucy’s loss gave Bethany the drive to advocate for alloimmunized moms and HDFN babies around the world, and to advocate for the lives of her future children (more on that in Part 2). Lucy’s life has continued to impact the lives of countless babies with HDFN.

Note that since the time of this recording, Allo Hope Foundation has changed its recommendation such that a critical titer for Kell is any titer (previously 4), consistent with the ACOG Practice Bulletin, available here: https://pubmed.ncbi.nlm.nih.gov/29470342/

Episode themes: 

• Diagnosis of alloimmunization
• Family life during an alloimmunized pregnancy
• The life saving power of advocacy
• Severe, early HDFN
• Fetal death, stillbirth  and grief

Terminology used in this episode: 

• PSV: the measurement gained from the MCA Doppler ultrasound. It is the maximum velocity (sometimes called Pmax) that blood is moving through the middle cerebral artery. Anemic blood flows faster than nonanemic blood. The PSV is used to calculate the Multiples of the Median (MoM) value to check for anemia.
• MoM: The result of the calculation to see if the baby is anemic. The peak systolic velocity (PSV) and gestational age are used to calculate the MoM. A result of 1.3 indicates mild anemia. Numbers of 1.5 or higher indicate moderate to severe anemia and signals the need for an intrauterine transfusion or delivery. Lucy’s was 2.5

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

Links in this episode: 

https://losinglucyandfindinghope.com/

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

Severe alloimmunization is surrounded by vague information and confusion, but this episode will prepare patients and providers for available treatment. Patients with previous fetal death, previous IUT before 24 weeks, or with a titer of 256 or higher may be diagnosed with severe disease. Remember, options do exist for severe situations, and prevention and monitoring are the key elements to having a healthy baby. This episode discusses IVIG and plasmapheresis, early MCA Scans and early IUTs, and phenobarbital. 

Episode themes: 

• Common misconceptions about severe disease
• Defining severe disease
• Delaying IUTs with IVIG and plasmapheresis treatment
• What to expect during IVIG and plasmapheresis
• Oral phenobarbital for mom to reduce need for newborn transfusion after birth
• Tips for patients entering a pregnancy complicated by severe disease

IVIG: Intravenous Immunoglobulin:  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. 

Phenobarbital: An oral medication given to an alloimmunized mother before baby’s birth to improve baby’s liver function, allowing the baby to more efficiently break down bilirubin and reducing the need for exchange transfusion after birth.

Plasmapheresis: The process of removing the plasma from the body whereby the blood is removed and run through a machine that separates the plasma from the red blood cells. The plasma is discarded and the red blood cells are returned to the body with fewer antibodies (which live in plasma).

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

Guests: Dr. Ken Moise https://partnersincare.health/directory/kenneth-moise

Dr. Thomas Travett http://www.georgiaperinatal.com/dr-trevett/

Links mentioned in this episode: 

PETIT study on IVIG:l https://pubmed.ncbi.nlm.nih.gov/29902448/

Ruma et al. on plasmapheresis & IVIG:  https://www.sciencedirect.com/science/article/abs/pii/S0002937806022058

Trevett et al. on phenobarbital: https://www.ajog.org/article/S0002-9378(04)00938-X/fulltext

Jansen nipocalimab clinical trials for severe disease patients: 

https://clinicaltrials.gov/ct2/show/NCT03755128

https://clinicaltrials.gov/ct2/show/NCT03842189

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.

Molly and Bethany discuss the when and how of intrauterine blood transfusions (IUTs). Bethany, possibly the world record holder for number of IUTs, has had 16 IUTs through her four allo affected pregnancies. IUTs come with their own risks, but in the hand of a trained and experienced doctor they are the most effective way to maintain the health of an anemic baby.

Episode themes: 

• Likelihood of needing an IUT
• When to perform an IUT (before hydrops is present)
• IUT procedure before, during and after
• Medications used during an IUT
• Spacing of IUTs when multiple are required
• Outcomes of IUTs in a skilled facility
• Tips for patients and clinicians

Questions for your MFM discussed in this episode: 

• How many IUTs do you do per year?
• How often do you do them?
• How many did you do last year?
• What is your success rate?
• Have you ever lost a baby to the procedure?
  • How many?
• Do you perform the IUT in an operating room?
• Do you provide mom with conscious sedation?
• Do you paralyze the baby for the IUT?
• Walk me through the procedure
• What does the monitoring look like after the IUT is finished?
• What do you use to decide when to space IUT?
• When do you do the last one in general?
• How early have you done them?
• Are you willing to refer me to a different MFM for IUTs if necessary? 

Other Tips

• Have a friend or partner there with you when you get an IUT. 
• Communicate constantly with your nurses, doctors, and anesthesiologist 
  • Communicate needs and anxieties
• Speak up about your needs and comfort 
• Ask for and record the beginning and ending hematocrit 

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

• IUT: Intrauterine transfusion: using a needle through the mom’s belly to insert blood into the umbilical cord or abdomen of an anemic fetus. 
• Cordocentesis: a test done during the IUT process that determines that a fetus is definitely anemic before transfusing blood. 
• Ascites: fluid collecting in the abdomen of a fetus, a sign of fetal hydrops. This is a sign of critical distress and blood should not be infused into the abdomen. 
• IVT: Intravascular transfer: an IUT where the blood is transferred into the umbilical cord vein and therefore directly into the baby’s vascular system, treating the anemia right away. 
• IPT: intraperitoneal transfusion: transferring blood into the abdomen of a baby. Usually reserved for early gestation before an IVT is possible. Blood is later absorbed into the system when the baby needs it. Not to be done when baby shows signs of fetal hydrops. 

Guests: Dr. Ken Moise https://partnersincare.health/directory/kenneth-moise

Dr. Thomas Travett http://www.georgiaperinatal.com/dr-trevett/

Links mentioned in this episode: 

Canada Study on how often alloimmunized women need IUTs: https://onlinelibrary.wiley.com/doi/pdf/10.1111/trf.16061?casa_token=oeYAk0MeFNsAAAAA:LxM4QAUDqnTuadhT6Ya7gZrtZ5pMv1GzwtLdJGxIHOOglSCgdN-GzjhNfMXv7EwklB1q8n9-d4sT5iE

Dr. Moise’s article on UpToDate: https://www.uptodate.com/contents/intrauterine-fetal-transfusion-of-red-cells?search=interueteran%20transfusion&source=search_result&selectedTitle=6~150&usage_type=default&display_rank=6

Leiden retrospective analysis after 1678 IUT procedures: https://obgyn.onlinelibrary.wiley.com/share/MB8MU3HPWYVXSCUMIE7G?target=10.1002/uog.17319

Study on steroids affecting MCA scans: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8411792/

Redheads need more anesthesia: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1362956/

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.

Bethany and Molly discuss how to monitor an Alloimmunized pregnancy. This is the first step to treating a sensitized pregnancy. Monitoring the antibody titer can indicate when you need MCA Scans, and intrauterine blood transfusions to keep your baby healthy. 

Episode themes: 

• How babies at risk for HDFN are monitored
• Titers (purpose and frequency) 
• MCA Scans and MoM values (purpose and frequency)
• Specific MCA Scan tips
• What’s next after a high MCA scan
• Fetal outcomes and survival rates 

Terminology used in this episode: 

• Antibody Titer: A measure of antibodies in the mom’s blood, indicates threat to a baby who is affected. Antigen negative babies do not need titer monitoring. 
• Critical Titer: A titer level of 16 (or 4 for Kell) that indicates a need for in utero medical treatments. Remember, once you hit critical levels in a pregnancy you are considered always critical for each subsequent pregnancy and should start MCA scans at 15 weeks in that and each subsequent pregnancy. 
• MCA Scan:  (Middle Cerebral Artery Doppler Scan)  Special ultrasound often only used after a critical titer is detected. Scans the blood flow in the middle cerebral artery of the fetus. 
• MoM: (Multiple of the Median score) the final measurement of an MCA scan divided by gestational age of fetus. Scores of 1 are ideal, scores of 1.5 or higher indicate moderate to severe anemia and a need for intervention.
• Hematocrit: a score detected during a cordocentesis (blood drawn from the cord) to determine the red blood cell volume in the blood.  The normal hematocrit range for infants 0-6 months is 37.4 - 55.9% for females, and 43.4 - 56.1% for males. A fetal hematocrit of less than 30% is considered anemia. Cordocentesis tests can start at 15 weeks. 

Anti-E Pregnancy Study: Moran P, Robson SC, Reid MM. Anti‐E in pregnancy. BJOG: An International Journal of Obstetrics & Gynaecology. 2000 Nov;107(11):1436-8. LINK

Survival rates for fetuses receiving IUTs: Lee L, Nasser J. Doppler ultrasound assessment of fetal anaemia in an alloimmunised pregnancy. Australasian Journal of Ultrasound in Medicine. 2010 Nov;13(4):24. LINK

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

For more on tests during pregnancy, see our prenatal testing guide at https://allohopefoundation.org/library/prenatal-testing/

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.

Testing is the first step toward having a safe and healthy HDFN baby. This episode covers the importance of early tests that can determine how severely your baby will be affected by your antibodies. We include information about new tests, Rhogam, and how you can donate plasma to help other expectant mothers determine the antigen status of their babies. 

Episode themes: 

• Standard pregnancy screening for antibodies
• Antibody ID and titer blood test 
• Blood tests for baby’s father
• Cell free fetal DNA (cffDNA) for baby’s antigen status
• Rh Immune Globulin (Rhogam)

Plasma Donation: Southern Blood Services https://southernbloodservices.com/

For information on donating to create test kits email msertell@southernbloodservices.com

Terminology used in this episode:

• Antibody Screen: Part of mother’s blood work that can be used to determine the presence of antibodies 
• Antibody ID: followup screen on the mother that identifies what type of antibody the mother has
• Titer: test (and term often used to describe measurement) of the amount of antibodies present in the mother’s blood 
• Critical Titer: Kell 4, All others 16 
• Antigen Phenotype test: Test for the father to determine antigen that baby may inherit 
• Amniocentesis: drawing amniotic fluid by piercing the amniotic sack with a needle through the mother’s belly, can cause antibody titer to go up 
• MCA Doppler Scan: advanced non-invasive scanning technique used to determine fetal anemia 
• Cell Free Fetal DNA Testing: a test using the mom’s blood to determine baby’s blood type, not readily available in the United States. Can be used to detect D, Kell, E, c, and C antigen status. 

Cell Free Fetal DNA (cffDNA) information https://allohopefoundation.org/library/cffdna/ 

cffDNA direct from Sanquin Laboratories https://www.sanquin.org/products-and-services/diagnostics/non-invasive-fetal-blood-group-genotyping

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

For more on tests during pregnancy, see our prenatal testing guide at https://allohopefoundation.org/library/prenatal-testing/

Guests: Dr. Thomas Trevett http://www.georgiaperinatal.com/dr-trevett/

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.

Welcome to the Allo Podcast! This episode introduces our hosts, Bethany and Molly, our recurring guests from our Medical Advisory Board, the Allo Hope Foundation, and most importantly the diseases known as Maternal Alloimmunization and Hemolytic Disease of the Fetus and Newborn. Get the quick facts on how to monitor and treat this disease and how Bethany, Molly, and so many moms have used these treatments to deliver healthy babies. 

Episode themes: 

• Alloimmunization overview
• What to expect in an allo pregnancy
• How HDFN affects the baby
• How allo moms can protect themselves and their baby

Terminology used in this episode: 

• Alloimmunization: a disease in which a mother’s antibodies are primed to attack an incompatible blood antigen that may be present in the blood of their fetus.
• Hemolytic disease of the fetus and newborn (HDFN): a blood disorder in a fetus or newborn that develops when the pregnant mother’s antibodies pass through the placenta during pregnancy and attack the baby's red blood cells, breaking down the baby’s red blood cells (hemolysis) at a rapid rate and causing the baby to become anemic. 

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

Guests: Dr. Ken Moise https://partnersincare.health/directory/kenneth-moise

Dr. Thomas Travett http://www.georgiaperinatal.com/dr-trevett/

Links mentioned in this episode: 

Partners in Care HDFN Definition: https://partnersincare.health/conditions/hemolytic-disease-of-the-fetus-and-newborn

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

In this episode of the Allo Podcast we listen to Molly’s Story: how she found out she was alloimmunized, the steps that she took to maintain appropriate care, the pregnancies and births of her two subsequent sons, and its effect on her life and that of her family. 

Episode themes: 

• Low titer alloimmunized pregnancy
• Anti-S; Anti E antibodies 
• Partial D/Weak D antigen
• Rhogam
• Induced vaginal birth after cesarean (VBAC) 
• Miscarriage
• Hemorrhage
• Pain medication-free birth 
• Delayed onset fetal anemia

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

Explanation of Weak D and Partial D and its implications for pregnancy: https://onlinelibrary.wiley.com/doi/full/10.1111/bjh.12275

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

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 info@allohopefoundation.org 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