The Allo Podcast

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/

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.