Episódios
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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 CenterDONATE TO AHF AFRICA
Episode Topics:
Severity of subsequent alloimmunized pregnanciesIVIG and importance of timely treatmentIdeal newborn management of HDFNAntibody-specific differences in newborn HDFN presentationErythropoietin to prevent or delay need for neonatal transfusionCell free fetal DNA (cffDNA) (Billion To One’s Unity Screen) for fetal antigen typing instead of amniocentesisExhaled carbon monoxide to monitor for newborn anemiaNipocalimab trial updateState of alloimmunization/HDFN in AfricaWhat can you do to help?Links:
Leiden paper on disease severity in subsequent alloimmunized pregnanciesPETIT trial on IVIGLeiden paper on neonatal management of HDFNErythropoietin for newborns with HDFN to delay or reduce need for transfusioncffDNA for fetal antigen statusUtah study on carbon monoxide to detect hemolysisNipocalimab for HDFN:Clinical trial listing (continuously updated)Phase 2 resultsAHF/Dr. Moise live webinar with allo moms on nipocalimabEthiopia studyWorldwide Initiative for the Eradication of Rh DiseaseRhesus Solution Initiative (Nigeria)DONATE TO AHF AFRICAGeneral donation to AHFResearch 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.
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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/HDFNSevere HDFN MCA Doppler ultrasound to monitor for fetal anemia Intrauterine blood transfusion (IUT) Emergency c-sectionNICU experience with HDFN babyWelcoming a miracle while coping with the grief of previous lossHopeWhat 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.
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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.
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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 BelgiumReferences:
Nipocalumab trial Phase 2 resultsNipocalimab trial Phase 3 enrollment updateResearch 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.
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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 lossIdentifying the types of trauma with this diseaseHow to find support in times of needSpecific coping tips for loss and griefHow to support a person who has lost a childFinding hope in the darkest momentsLinks:
Why high risk pregnancy causes traumaArticles on Losing Lucy and Finding HopeBooks 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 ElliottEffectiveness of a counseling intervention after a traumatic childbirth: a randomized controlled trialIf 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.
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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 litigationFinding ways of maintaining control in difficult situations Advocacy in the NICU and post-discharge for HDFN babiesAnxiety of motherhood and the burden of being your baby’s best advocateReferences:
CholestasisHDFN Newborn calculators and toolsResearch 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.
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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 loweredWhether to use Rh immune globulin ("Rhogam") in early pregnancy bleedingCross-matching for more than just the D antigen before transfusionBreastfeeding HDFN babiesChecking titers before pregnancyWhen to do plasmapheresis and IVIGWhen to conduct MCA Doppler ultrasoundsHow to ask for different careResources mentioned in this episode:
AAP guidelines for hyperbilirubinemia: LINKZimmerman et al. study (with Mari) discussing the utility of weekly MCAs in discussion: LINKDr. Markham's paper on women with multiple antibodies: LINKSensitization 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
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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 diseaseManaging alloimmunization with twinsWhen to get an IUTMaking difficult decisions with twins After birth in the NICU and preemie challengesLinks
TTP information Platelet Disorders - Thrombotic Thrombocytopenic Purpura (TTP) | NHLBI, NIHTTP and Pregnancy TTP and pregnancy | Blood | American Society of Hematology (ashpublications.org)MoM calculator Calculators & Tools - Allo Hope FoundationIUT 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 donationSurrogacyAdoption 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 ClinicThe 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#successIVF: 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
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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 diseaseFirst alloimmunized pregnancyIUT protocols and timingNICU experience Grief and traumaReflecting on daily life after an alloimmunized pregnancyIn vitro fertilization (IVF) using preimplantation genetic diagnosis (PGD) to have an antigen negative babyReference
Study about missed Rhogam https://www.sciencedirect.com/science/article/pii/S2666577821000368More 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/downloadResearch 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
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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 hearMost important initial blood tests and their implicationsDetermining how quickly a patient should see a high risk doctorThe importance of finding the right MFM, not the nearest MFMReference
ACOG conference information ACOG Annual Clinical & Scientific MeetingHow to get a Allo Hope Foundation Patient Booklet Booklets - Allo Hope FoundationACOG’s list of antibodies known to cause HDFN Management of Alloimmunization During Pregnancy | ACOGMFM provider checklist Provider Checklist - Allo Hope FoundationACOG guidelines for Late Preterm/Early Term Deliveries Medically Indicated Late-Preterm and Early-Term Deliveries | ACOGResearch 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
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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 treatmentFetal lossWhen to find second opinionsSevere HDFN (early onset)Plasmapheresis and IVIG for severe diseaseCoordination of care across multiple providersNICU experiencesIron chelation therapy in HDFN newborns with extremely high ironLinks:
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
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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 FoundationAnd, 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.
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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 HDFNRhesus 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 todayAllo 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
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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 birthTwo major effects of HDFN: hyperbilirubinemia and anemiaMonitoring bilirubin via blood test or photo sensor.Transfusions: exchange, top-up and IVIG, and tips if your baby needs oneDelayed onset anemia: why a baby with no symptoms at birth needs to be monitoredWeekly blood tests for reticulocyte count and hematocrit/hemoglobinWhen to treat anemia and hyperbilirubinemiaWhen we’re done with HDFNHDFN babies do not need iron supplements: request ferritin tests before care teams give iron supplementsSpecial considerations in babies who received intrauterine transfusions (IUTs) in uteroBaby’s pre-birth medical history is not automatically recorded in baby’s medical recordTerminology 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 bloodHemoglobin: 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
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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 timeWhy home births are not indicatedWhat to look for in a NICUWhat tests to request at deliveryRequesting crossmatched blood, just in case Maintaining your empowerment Creating a birth plan What to pack for your deliveryHow 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/
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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 NICUAllo 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/
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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 statusThe Bad NumberAdvice for post-birthMid-Pregnancy Postpartum AnxietyAdvocacy against hospital policyBeing your baby’s medical recordTerminology 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/
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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 careDoctor’s reflection on the patient/provider relationshipUnderstanding your choices with an MFM Establishing mutual trust with your Doctor What to look for in an MFMYour body, your baby, your careThe things to look out for in a doctorGreen Flags:
Doctor offers cell free fetal DNA tests if appropriateDoctor discusses all appropriate treatment options with you in a collaborative wayPlanning for possibilities of IUTsDoctor increases their own education on alloimmunization if neededDoctor follows up after birth Provides ultrasound 24 hours after IUT Gives paralytic to baby in IUTIUT in an operating roomDoctor communicates with post birth care providers Cares about your emotional and mental well beingFor 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):
Are you willing to collaborate with other doctors if needed for my care throughout my pregnancy?Are you on board with this treatment plan?Permacath surgery at 8 or 9 weeksPlasmapheresis and IVIG at 9 or 10 weeksWeekly IVIG infusions until baby's first IUTcffDNA test for baby's antigen status at 14 weeksweekly MCA Doppler scans starting by 15 weeks3. 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/
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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 doctorPursuing other family options (sperm donation, adoption, preventative treatment) Preventative treatments for severe HDFNThe Rainbow BabyMaking the decision to continueUnexpected deliveries One more timeThe Blog: Losing Lucy and Finding HopeThe Allo Hope FoundationTerminology 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
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