High E Antibody
My name is Kristin and I have been married to my wonderful husband Ryan for almost 8 years. We have been friends since high school and fell in love 10 years ago. We knew we wanted a family and began to try right away. After 7 years and 6 still unexplained miscarriages we had our first child in February 2008 a little boy. We were so blessed and so happy. Little did we know that 10 months later in December of that year we would be blessed again with our second son. Some say we are crazy for having children so close but we wouldn't change it for the world.
Little did we know that the birth of our 2nd child was where this story really began. We decided in late summer of 2010 that we wanted another child and we got pregnant almost right away. We were still cautious about losing the pregnancy and so we told only immediate family. At my 10 week appointment I felt a lot better about letting our friends know since we not only got to hear the heartbeat but I got to see our little one in an ultrasound. We immediately began telling our friends.
A few days later I received a phone call from our Nurse Practitioner she had some news about my test results. I was instantly nervous since I hadn't ever had a call before. I usually just waited for the results in the mail. But she told me that I had an unusually high antibody level and in particular the E antibody. So of course I had a lot of questions and as I began to ask I got the worst answer ever. She began to tell me that she had not had another patient with this issue ever and really she couldn't answer any of my questions. So she was going to have the Perinatal clinic at Methodist call me to schedule a consult and see what they could do.
I hung up my phone feeling terrified and confused. I instantly called my husband who tried to get me to relax since we had no idea what we were panicking about yet. So I did the next thing I could think of and I jumped on the internet. After hours of searching I kept coming up with nothing. And then finally, I found some information. I can't say that I was thrilled when I did. I was a little more terrified. Everything that I found was so scary. Most of the women I found had wound up requiring intra-uterine blood transfusions, babies were born very early, babies spent 2 days to 6 weeks in the NICU etc. It was all a lot to take in. And to top it off it had been 2 days and I still hadn't heard from the clinic about even scheduling an appointment. After reading all of this, I decided to call them. I finally got an appointment but it still wasn't for a few weeks. So I kept researching and finally found a thread on facebook with a bunch of women who were going through this Anti-E issue right now. It was nice to hear from some others who went through this and who have healthy happy children now.
I finally got into the perinatal clinic to see the high risk doctors. Luckily I had seen them with my first child due to IUGR issues and was very comfortable with them. I went in and they did an ultrasound to check her measurements and be positive of how far along we were. After this I had my consult with the perinatologist. Even one of the nurses sat in since this apparently was very rare and she was curious. I have never left an office feeling so conflicted in my life. On one had they explained everything to me in full detail about how my antigens were e/e and my husbands were E/e. My 2nd child was also E/e and during delivery when our blood combined my body stored the memory of the E antigen so in the future it could build up antibodies against it should it come in contact again.
And this is the case with our current pregnancy. My daughter has a large E and so my body began to build up antibodies to attack the E in my system. But in all reality it was attacking the red blood cells of our unborn child. I was so scared since, I felt totally normal and couldn't "feel" that something was wrong. They explained to me that there was a chance that our child will become severely anemic and require transfusions while in the womb. If that was the case they would do them every 2 weeks from 20-34 weeks and then deliver her. If not we would be able to just check on her every 2 weeks by ultrasound.
We now go into Methodist hospital every 2 weeks to check the blood flow through the main artery in her brain. We know that if it begins to speed up that she is in trouble and she will need the transfusion. So far we have been very lucky and so blessed that she is doing great and looking healthy. We still have a little bit of time left and will continue to be monitored. But we know that she will be taken at 37 weeks since once she is out my system can't harm her anymore. They have recently begun preparing us for the possibility of a required transfusion after she is born. We didn't know that even though she may look great now that once she is born her levels may be to high for her to regulate on her own so the transfusion may be required.
We are staying positive and praying a lot that things will go well. I truly feel that God gives us what we can handle and we, as a family have been through a lot already and it has all made us stronger. We also know that this has the tendency to get worse with each pregnancy so we are praying for answers to whether or not another child is right for us after this little girl comes to us.
I am so thankful for all of the people I have met over the internet who are dealing with this condition too. And for the amazing care I have been receiving and the Perinatal clinic in Methodist hospital. Our doctors and nurses are amazing and I pray that someone else who is dealing with this rare antibody issue will see this story and know they aren't alone.
We are so excited to meet our little girl on the 13th of April and will keep praying that God will watch over her and us as a family and keep us growing together. And that this will make us stronger.
to Other Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.