*SPECIAL GUEST* - Dr. Jacqueline Vidosh

Dr. Vidosh is a practicing OBGYN and proud Mother of a baby boy, Noah, diagnosed with Edwards Syndrome. She takes us through the story of her pregnancy, the arrival of Noah, and her experience with him has changed how she practices medicine and counsels patients. 

Stay tuned next week for part 2 coming this Saturday, March 18th!

Resources:

Support Organization For Trisomy (SOFT)

*SPECIAL GUEST* - Sasha Griffith, RN, BSN, CHPPN, CPLC

We have not one but two special guests this week! Delaney Herman is back this week as my co-host to help me interview Sasha Griffith from our palliative care team. 

Sasha walks us through the complexities of palliative care covering the following:

• The difference between palliative care & hospice care 
• What it looks like for a patient to be discharged home on hospice care
• What kinds of providers & healthcare professionals form a palliative care team
• The role of palliative care in the hospital/inpatient setting
• Counseling patients and families on how to talk about their baby's diagnosis with other young children in the family and also adult family members and friends 
• The process of developing a care plan or delivery plan for a family in need of palliative care

*SPECIAL GUEST* – Dr. Amy Coffey

Pediatric pathologist & Hematopathologist

Dr. Coffey leads our discussion on the role of autopsy after a stillbirth or infant loss covering the following topics:

• Process/procedure of an autopsy
• Types of autopsies
• Non-invasive autopsy testing
• The ‘four hour’ guideline to get the fetus/neonate to the morgue
• Estimating time of death for an IUFD based on physiologic changes using autopsy
• Conditions or diseases where autopsy can be helpful in guiding future pregnancy treatment
• Funeral service options after an autopsy
• Genetic testing options after an infant or neonatal loss
• Role and significant of placental pathology
• Placental pathological findings including funicitis and fibrin deposition in the placenta
• Placenta reserve capacity
• What pathologists look for to rule out a placental abruption
• Who pays for the autopsy?
• How long results take to return on an autopsy

*SPECIAL GUEST* - Delaney Herman, LCSW

This week continues our discussion on stillbirth, infant loss, and neonatal loss. Delaney starts out by telling us a bit about her background, how she came to be a social worker, and what the role of social worker is in our particular clinical setting.

In this episode with discuss the following:

·       The spectrum of loss we see in our practice including miscarriages, fetal loss, and infant/neonatal loss

·       Is there a correct way to grieve?

·       What grief may look like shortly after a loss

·       How grief can differ, fluctuate, and change throughout the grieving process

·       Differences between social workers, licensed professional counselors, psychologists, and psychiatrists

·       Warning signs/symptoms that family members and loved ones of those who have lost a baby should look out for to seek emergency help

*TRIGGER WARNING* this episode discusses stillbirth, infant loss, and fetal loss and may be distressing or trigger for some listeners. Listener discretion is advised.

We’re continuing our discussion on stillbirth this week getting into a bit more of the nuchal cord aspect of the House of the Dragon – The Black Queen episode. This week we talk about the following topics:

·       Umbilical cord issues including nuchal cord (single, double, triple) and their prevalence

·       Work-up for a stillbirth

o   Maternal labs

o   Amniocentesis vs. fetal tissue for chromosome analysis

o   Placental culture/pathology evaluation

o   Introduction to neonatal/fetal autopsy

*TRIGGER WARNING* this episode discusses stillbirth, infant loss, and fetal loss and may be distressing or trigger for some listeners. Listener discretion is advised.

In this episode of Debunking Dramatizations we’re going to talk briefly about House of the Dragon Season 1 Episode 10 – The Black Queen. This is the fourth. Yes, the FOURTH obstetrical delivery depicted in just this one season of House of the Dragon. This is also Raenyra’s 4th child, which appears to be stillborn with a nuchal cord, and a possible placental abruption?

In this episode we start by talking about what a nuchal cord is and also explain what happens in a placental abruption. Then we talk a bit more about stillbirth covering the following topics:

• How stillbirth is defined
• The prevalence of stillbirth
• Maternal and fetal risk factors for stillbirth
• Preventing stillbirth utilizing antenatal testing such a growth scans, biophysical profiles (BPP), non-stress test (NST), and the modified BPP
• Kick counts
• Method of delivery for a pregnancy resulting in stillbirth
• Future pregnancy deliveries and surveillance after experiencing a stillbirth

Stay tuned for Part 2 next week! Then we have our wonderful social worker, Delaney Herman, that will give us some perspective and resources for the psychosocial aspect after experiencing a neonatal or infant loss.  

The cherry on top of our season on HDFN and alloimmunization. This week we're talking about the future potential medical therapies for this disease including nipocalimab. See below for the episode outline and topics Dr. Moise discusses this week!

• The neonatal Fc receptor is the FcRN (Neonatal crystallizable fragrant receptor)
• Where FcRN receptors are located in the human body
  • Endothelial cells of blood vessels in the skin & muscle
  • Placenta
• Function of FcRN receptors
• Definition an FcRN blocker
  • Monoclonal antibody or fragment that blocks the FcRN by connecting to it
• How monoclonal antibodies are made
• Human applications for FcRN blockers
  • Vvygart made by Argenx for myasthenia gravis
  • Warm autoimmune hemolytic anemia
  • Idiopathic thrombocytopenia purpura (ITP)
  • Chronic demyelinating polyneuropathy
  • Pemphigus vulgaris
  • Grave’s exophthalmos
• Autoimmune disease, the inflammatory pathway and the FcRN blockers role in the bigger picture
• How FcRN blocker medications are administered
• How an FcRN blocker could be used in pregnancy
• Diseases in pregnancy that could potentially be treated with an FcRN blocker:
  • Hemolytic Disease of the Fetus & Newborn (HDFN)
  • Fetal Neonatal Alloimmune Thrombocytopenia (FNAIT)
  • Gestational Alloimmune Liver Disease (GALD)
  • Congenital Heart Block / Neonatal Lupus
• Current drug trials for FcRN blockers in pregnancy
• FDA drug trial process – pre-clinical, phase I, phase II, phase III, and phase IV for drug trials
• Potential risks of FcRN blockers
• How FcRN blockers may affect vaccines in pregnancy
• Other clinical conditions where FcRN blockers have been successfully used

Send us your questions on HDFN & alloimmunization for a Q&A episode! Email us at [email protected]

In this episode we’re going to discuss future pregnancy & conception options after alloimmunization sensitization. Dr. Moise starts by briefly touching on Bethany Weathersby’s story after her loss to HDFN and her pregnancies that followed. Bethany is the mother of five living children, the CEO and founder of The Allo Hope Foundation, and one of the hosts of The Allo Podcast. about her pregnancies affected by alloimmunization and after a loss from alloimmunization. Dr. Moise takes us through the future pregnancy options for alloimmunized mothers including:

• Adoption
• Surrogacy also known as a gestational carrier
• IVF pre-implantation testing (heterozygous Dad’s only)
  • Confirm paternal zygosity first – refer to our Episode 8 ‘Who’s yo Daddy’
• ‘Snowflake’ babies – donor embryos
  • Although rarely have any DNA testing for blood type prior to freezing
• Donor insemination
• Chorionic Villus Sampling (CVS) and the effects on an alloimmunized pregnancy
• Future medical therapies and potential noninvasive treatment options

Send us your suggestions for future episodes or questions for us to cover!

Instagram: @newswomb

Email: [email protected]

Bili is back and so is Dr. Lopriore!

Last week we talked about Phase 1 of neonatal management of HDFN and alloimmunization. This week we’re moving into Phase 2 while we discuss the following:

• Phase 1: intensive phototherapy – usually lasts about 1-2 weeks
• Phase 2: monitoring neonatal hemoglobin & hematocrit
• Outpatient neonatal monitoring – measuring hemoglobin, hematocrit, and reticulocyte counts
• Neonatal red blood cell production
• Why HDFN babies do NOT need supplemental iron
• The role of erythropoietin (EPO) in HDFN and the latest studies on it
• How HDFN treatment varies in different countries
• Other rare neonatal diseases related to HDFN
  • Inspissated bile syndrome or “bronze babies” – elevated direct bilirubin as a complicated or cholestasis
  • Neonatal hemochromatosis – elevated ferritin levels
• Difference between a ‘top-up’ or ‘simple’ transfusion vs. exchange transfusion
• Anecdotal evidence on the role of maternal phenobarbital prior to delivery
• Breastfeeding, hyperbilirubinemia, and phototherapy
• Reticulocyte count of 2% for two consecutive weeks to ‘graduate’ from pediatric hematology (in the US)
• Long term outcome & developmental expectations for children with HDFN

Articles:

• Antenatal maternal phenobarbital
  • doi: 10.1016/j.ajog.2004.08.016
• The LOTUS study: neurodevelopmental outcome after intrauterine transfusion for hemolytic disease of the fetus/newborn
  • doi: 10.1016/j.ajog.2011.09.024
• Updated AAP Neonatal Hyperbilirubinemia Management

A special thank you again to Dr. Lopriore for his time and all his contributions to this field!

Special guest on our episode this week and next, Dr. Enrico Lopriore from Leiden University. He sat down with us at IFMSS in November to do a special episode on the neonatal portion of alloimmunization and HDFN. 

This week we start by discussing Dr. Lopriore's background and training and then cover treatment and management of HDFN in the neonatal phase. See below for more details!

• Hyperbilirubinemia – why is matters
  • How to measure it – direct bilirubin vs. total bilirubin
  • Complications of untreated elevated indirect bilirubin
• Treatment options in the neonatal course of HDFN
  • Phototherapy
    • Single vs. Double vs. Triple phototherapy
    • Biliblankets
    • Factors that affect efficacy of phototherapy
  • Exchange Transfusions
    • How they’re performed
    • Risks & complications associated with them
  • Intravenous Immune Globulin (IVIG)
    • Literature and research review on efficacy and its role in the neonatal phase of HDFN
  • Updated AAP Neonatal Hyperbilirubinemia Management

More to follow next week in Part 2!