The number one thing that everyone asks is what do I do? Where do I start? Here are some first steps that will set you up for successfully keeping you and your baby safe.
Step 1: Get a medical alert card or bracelet. Antibodies are the second leading cause of fatal reactions during blood transfusions. Always declare your antibodies to your health care providers for life. You can read more and get a free medical alert card here.
Step 2: Start a notebook or binder. Keep all of your questions, notes, and results in it. There is a printable package you can download here.
Step 3: Get your current blood levels. They will be called titers or quants.
Step 4: Go back and read the Intro to Iso page to understand about your disease. When you're done with that, keep reading on this website. It will walk you through everything you may encounter with your pregnancy.
Step 5: Join a peer-to-peer support group. They can connect you with multiple resources. Check this one out: https://www.facebook.com/groups/antibodiesinpregnancy/
Step 6: Read up on your country's guidelines. You can ask your midwife or OB to print them out for you, or go to a hospital resource library (just call the hospital to ask if they have one), or a university.
UK and territories: https://www.rcog.org.uk/en/guidelines-research-services/guidelines/gtg65
Step 7: Get a referral to MFM for a treatment plan. When you arrive, ask questions such as:
How often should we draw titers?
When should I come back? When titers reach 1:8?
Will you consult with other doctors?
When will we start MCA scans?
How often will we do MCA scans? Every week?
When will we start BPPs? How often will we do them?
When will we start NSTs? How often will we do them?
Is IVIG an option?
What is the earliest start for IVIG?
What is the latest start date for IVIG?
Will the Dr do IUTs?
How many IUTs have you done?
What is your success rate?
What is the earliest the Dr can do IUTs?
What is the latest the Dr will do IUTs?
Will the Dr induce?
Induce at _____ weeks if titers are below critical.
Induce at _____ weeks if MCAs are good.
Induce at _____ weeks if MCAs are bad.
Step 8: Talk with your doctor about clinical trials that are out there including the M281 trial. Print off the trial page
and bring it in with you when you ask for that referral to the
specialist. Ask if you meet the criteria. Even if you do not, give your
doctor the information - you never know, it might save the next
patient's baby. It never hurts to make people aware of the new and
developing treatment options that are out there.
While You Wait
While you wait for that MFM referral, get some more blood work done on dad and baby. Get dad's antigen phenotype tested. It will give you two letters. You're looking for something that says EE or E+e-, or homozygous E. However it is phrased, it should tell you about Dad's antigen pair, not just one letter. This test absolutely should not be an antibody screen like they do on pregnant women. Below are some examples of the right test and the wrong test that were run on actual dads and shared in the Facebook group with permission. If Dad is negative for the antigen, then he cannot pass it on to baby. If baby is negative for the antigen that matches mom's antibody, then baby will be safe.
In the US the test is called Sequenome Sensigene (for anti-D moms only). You also have the option of sending blood overseas to the UK or Netherlands. cffDNA testing is now being done in Australia as well as some parts of Canada. Visit the cffDNA page for more information about testing around the world including instructions and forms.