I was there for my first routine Prenatal Appointment. To listen to the baby’s heartbeat or, if it was still too early, look for it on a little portable ultrasound machine. It was the first time I’d see our new little peanut. I wasn’t thinking about my routine blood work that had been taken a couple of weeks earlier. I just wanted to see that little heart beating. And I was caught off guard.
“Unfortunately, something showed up in your blood work.”
Wait…what blood work?
“I’m not a specialist, so I cannot explain this to you, but you tested positive for something called anti-E.”
“I’m sorry that I cannot tell you anything else. We need to get you in right away to see our prenatal specialist. If you stop at the desk on your way out, they will get you scheduled for a counseling session. Your husband should be with you.”
Wait, hold your horses…counseling? My heart dropped. Something is wrong with the baby? How do they know that already? I’m only 9 weeks along!!
With a sinking heart I managed to mumble: “Anti-what?”
“Anti-E. You can do some research on it if you want to, but make sure you go to reputable sources online.”
“You can’t tell me anything?”
“No, you really need to talk to our high-risk specialist. I do not really understand the condition myself. We will make you an appointment for next week.”
Counseling. High Risk. Anti-E. Is there a pro-E? What the heck is an E? Who tells you to google a “condition?” I had to wait a week to get in to see the specialist, and in the mean time we did a bit of research into what I now know is a pretty rare condition. I have gone back and forth on whether or not to share this with more people than just immediate family, not wanting to create more drama than there needed to be…but in the long run, I decided that I covet the prayers of those of you, my friends and family, who will stand with Sam and I throughout this pregnancy. Since we live far away from most of you, we decided that it would be a good idea to write it out here, to let you read it “from the source.”
What it is:
Everyone, you, me, your grandmother, your great-nephew…we all have a variety of proteins on our red blood cells that the medical community labels with letters: A, B, C, D, E…Most people would never know, and most blood is never tested for these proteins. They do not usually cause any problem. The Rh factor associated with pregnancy is the most well known issue regarding one of these proteins.
What happened in my case is that Oliver must have gotten the protein “E” from his dad, and I am E-negative (meaning that I do not have the E protein in my blood). Throughout the course of the pregnancy, there was some mixing of Oliver’s blood and my blood. There always is a certain amount of mixing, but in our case, the amount was greater – which could have been due to a somewhat weaker placenta, or perhaps the c-section…they are not sure how it happened. When my red blood cells (without an E) came in contact with Oliver’s red blood cells (with an E), my immune system basically freaked out. It viewed his blood as “foreign” and created an antigen to fight against the E. Which means that now my blood contains “Anti-E” antigens.
What this means:
For me: The level of the antigens in my blood is low, which is good. But, I now am supposed to wear a medical bracelet at all times, alerting medical professionals (in case of emergency) that if I should need a blood transfusion, it has to be specially tested to make sure that it does not have the E protein – or my body will fight it, reject it, and create more and more of these anti-E antigens.
For the baby: If our baby does not have the E protein, there should be no problems. Which is my prayer. However, since Oliver had the E, which means Sam has the E, there is a high possibility that this baby will too. The way they will monitor this is by testing my blood every 4 weeks for the first half of the pregnancy, and every 2 weeks for the second half. If the levels of this antigen in my blood increase, they will assume that the baby has the E protein, and my body is “fighting” against it again. As long as the level of the antigen in my blood does not hit what they deem a “critical” level, the pregnancy should be able to carry on as “normal,” but with extra monitoring, blood tests, ultrasounds, non-stress tests, etc. If the pregnancy goes full term with no major problems, the baby could be very jaundiced and slightly anemic when he/she arrives, possibly requiring a few extra days in the hospital or regular (daily) checkups for the first couple of weeks.
If the antigens in my blood reach a critical level (which would mean that a sizeable amount of my anti-E antigens would pass to the baby) then my blood would attack and kill the baby’s good red blood cells – causing him or her to become severely anemic. If it happens late enough in the pregnancy, they will take the baby early (even risking a stay in the NICU) because it would be safer outside than in. Further testing would be necessary to see the baby’s lung and liver development before that move. The baby could need a blood transfusion upon arrival (or multiple transfusions over the course of several months) , and likely an extended stay in the NICU. I would be referred to an area hospital with a good NICU if my doctor feels as though our little tyke will need that extra care.
Worst case scenario: If my levels are critical too early and the baby could not be safely taken out, more invasive testing (amniocentesis, etc.) would take place. The anemia in the baby could become so severe that it would cause his or her little heart to overload – it is a fatal condition. At that point I would then be transferred to another hospital for the baby to undergo a cord-blood transfusion (A blood transfusion into the umbilical cord while the baby is still in the womb). This is a very risky procedure, but because the anemia would be fatal, they would take the risks in an attempt to save the baby.
What you can do:
Pray with us. Pray that God would either expel the antigens in my blood all-together (miraculous healing), that the baby would not have the E-protein and we would have no issues, or that the baby would be miraculously protected from my anti-E antigens and that none would pass to this precious little life and destroy his or her healthy blood!
Pray for Sam and I…it is not easy knowing that your red blood cells could be fighting or hurting the unborn child inside of you. It’s scary. Things like amniocentesis and cord-blood transfusions and NICU stays are scary. On a petty level, I don’t like the thought of blood draws every 2-4 weeks or more for the entire pregnancy – so many pokes! And I know that I will be anxiously answering the phone listening to the results each time. So, pray for peace. To walk this journey, to trust our God (that I know is bigger, greater, and mightier than any diagnosis), and to have the grace that we will need every step of the way. It’s a condition that I will have for the rest of my life, and depending on how this pregnancy goes, may dictate whether or not we can have more children in the future.
Thank you for standing with us, and for praying for this precious new little member of our family. I will be seeing the high-risk specialist throughout the remainder of this pregnancy, and she will be monitoring me (and the baby) very closely. My recent blood work has been very encouraging – the levels of the antigen in my blood have not risen so far, actually they appeared somewhat lower when they were tested in early January. Yay God!! 🙂 We are hoping and praying that it stays that way throughout the remainder of the pregnancy.
Trusting that God will protect this precious little life inside of me,