Knowledge Is Power...I Guess

Nap time today was spent in research.  The problem is, when you have a blood disorder that affects almost no one (literally), there's not a lot of lay information out there.  So I found medical journals.  

Fun.  

But I got to reading.  I wanted to learn as much as possible and then put together intelligent questions to ask my doctor.  (If I'm going to have a super-rare disorder, I may as well own it.)  With the lack of easily-understood information out there, I thought I'd share what I've learned today.

The antibodies don't directly attack Matt's red blood cells.  Instead, my blood increases the bilirubin levels in Matt's body.  That affects the kidneys and can progress to anemia.

Once you get pregnant post-sensitization, the antibody response takes 6 months to develop.  This is based on an average.  That coincides with my gestation very well, so it is not surprising that my blood tests previously came back too low to titer.  

A titer of 1:2 to 1:4 indicates a mild to moderate risk of danger to the baby.  1:8-1:16 is considered moderate to severe.  1:32 is extremely severe danger.  1:16 is what I call a "red flag" for most pregnancies.  The "red flag" is the point at which the doctors jump into high gear with your treatment.  Of course, a few factors can indicate that the "red flag" should be set at a lower titer level.  Two of these factors include having a previous sensitized pregnancy, and titers increasing at a rapid rate.  I have both of these factors, and my "red flag" has been set at 1:8.

Currently, at my 1:4 titer, the risk of Matt being adversely affected in any way is low.  There's a 90% chance nothing at all will happen to him...as long as I stay at this level.  However, we have to ensure it doesn't escalate.  From now on, I'll receive blood tests every two weeks and ultrasounds every 3-4 weeks.  The blood tests will check the titer level, and the ultrasounds will check Matt's growth.  At this level, our goal is to deliver around 37 weeks.

Of course, it is very likely that (given the previous rate of increase) my next blood test will show an increase to 1:8.  At that level, I will have an amniocentesis.  The amnio will tell us Matt's blood type (which at this point is almost certain), and his bilirubin level.  

The bilirubin level will then be charted on a Liley Chart.  This chart shows bilirubin levels in relation to gestational age.  It's divided into three zones--One being the least dangerous.  Where I fall on that chart determines our course of action.  There are multiple ways to monitor and react in this situation.

Ultrasounds are actually highly effective at determining the red blood cell count of the baby.  This is the least invasive method available.  Amniocenteses are much more dangerous because they increase cross-exposure of our bloods, which increases antibody production.  However, if Matt develops anemia, the only intrauterine response is fetal blood transfusions.  This means a needle is inserted through my abdomen into Matt's umbilical cord, and he is given a transfusion. 

So, the whole effort is then balancing Matt's bilirubin levels with his lung strength.  If I get to 1:8 or 1:16, our gestational goal is 34-36 weeks.  

Suddenly I'm exhausted.  If you have any follow-up questions that I should ask, please let me know.  I'm sure I need to know it as well!  Good night for now.  I hope no one ever again needs to find out this information.