Description

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/