Information on Anti-E

I forgot to post this the other day. Its from a lovley lady who also had Anti-E and she sent me an email telling the story of her pregnancy/birth experience.

First and foremost, if this is your first pregnancy please know that things tend to go VERY NORMAL with NO COMPLICATIONS during your first effected pregnancy; we were told the chance of anything happening with a first effected pregnancy is less than 1%. However, with each effected pregnancy the risk of complication dramatically increases. However, there is no guarantee there will or will not be any problems with any pregnancy. Once you have one effected pregnancy your second is not guaranteed to be affected. You could go on to have several children with the same father and never have another effected pregnancy---it all depends on who’s blood composition the baby receives. Also, before I get too involved with this, I want to make this clear, I am not a doctor by any stretch of the imagination nor do I claim to be or understand everything they tell me. My medical knowledge/lingo is very limited so I ask them to tell me in "laymen’s terms" and that's how I explain it to other parents.

How do they test? What are they looking for?

In the beginning of your pregnancy they take an initial blood work up and that's how they discover the anti-e or E. What they will do is monitor your titer levels until you are around 24 weeks then they can really begin to monitor the baby through ultrasounds called MCA Dopplers. What they are looking for are signs of the baby becoming anemic. If this happens to the baby in utero it's similar to an adult having heart failure. I don't want to scare you but that's what this all boils down to and that's what they are looking for.

What are titer levels? What do they mean?

This is measured in "titer levels" and they are read as ratios (and each time they increase they double)...for example: 1:1 then 1:2 then 1:4 then 1:8 then 1:16 then 1:32 then 1:64 then 1:168 and so on. I've been told they don't start to monitor you and baby very closely until you are at 1:16 or 1:32 (depending on the doc). Mine started at 1:16 with the initial blood work up and in three weeks were up to 1:64. Titer levels do not guarantee or tell how a baby is doing; it’s just a standard they use to determine how closely they need to watch/monitor the mother and baby. With my experience once I got to the 24 week mark they never tested my titers again because they were using the MCA ultrasounds (this monitors the amount of blood flow to and from the baby’s brain) and they will also check the fluid levels in and around the abdomen and brain. The MCA Doppler U/S is a more reliable test than the titer levels. However, I have corresponded with women that did have their titer levels monitored while also having the U/S.

Does blood type (letter) matter?

Blood type does not matter, neither does race nor gender. The blood type (A, B, O, etc) does not seem to make a difference with the antibodies (c, C, d, D, e, E, Kell, etc). My husband and I are both A+, our first son is A+ (unaffected pregnancy) and our second son (first affected) is O+. The antibody is part of the blood composition not (letter) type, from what I’ve been told.

How do you get it?

The most common way to get this antibody is through a blood transfusion, if you have never had one then it came from the father of the baby—a blood transfusion just not in the ‘conventional’ way. (Same situation I had) This is not guaranteed to be a concern with every pregnancy. I have a 5yr old son (same father as Cameron---the baby I’m referring to) and we never knew anything about anti-e. My initial blood work never showed any signs of it (not that we knew to look for it but it’s a routine check with your initial blood work when you are pregnant). My husband also has an 12 year old daughter from a previous marriage and they never had any problems with this either. However, I have been told that now that I have the antibody it will stay with me forever. There are no adverse effects of having the antibody (for the mother) once the baby is born. If you are aware of the antibody and are not under a doctor’s care during pregnancy the mother could be harmed if the baby develops problems while in-utero.


Fetal Anatomic Ultrasound—what is it?

At approx 16 weeks they will most likely do a Fetal Anatomic Ultrasound---it's much more than just 'taking a look and finding out the sex' of the baby. We saw everything from the top of his head to his toes---to include organs, spine, little flap that is over your spine (I forget what it's called----again I'm no doc!). It was amazing and it took just over an hour for the ultrasound. What they are looking for at that point is to make sure the baby is developing "on schedule."

What happens if the baby becomes anemic while in-utero?

By now you may be asking yourself what happens if the baby develops anemia....If they determine the baby is developing anemia then they do an inter-utero blood transfusion (IUBT). They will do an IUBT up until 34 weeks (some docs won’t do one past 32 weeks but most will go as long as possible because of course the longer the baby has to develop on the inside the better)....if the baby develops anemia at 34 weeks or later they will take the baby (via c-section the majority of the time, depending on how far along you are, I suppose) and then do the transfusion. I was told the IUBT takes several hours. They will give the baby medicine to 'calm him down' make sure he responds okay to that, and then they begin the transfusion through the umbilical cord. Once the transfusion is complete you remain there for observation---depending on how you and baby are doing this can be a few hours to overnight.

My personal experience with an IUBT – we found out on a Tuesday that we had to have the procedure on Wednesday. That was the scariest time---the waiting. I was 31 ½ weeks at the time of the IUBT and they told me the would not do another one, if the baby continued to show signs of anemia after this IUBT they would do a c-section then do transfusions once the baby is born. They will do the early prep for a c-section before the procedure (just with giving you medicine) incase they need to an emergency c-section. Your spouse is not allowed in the OR with you for an IUBT but if they have to do an ER C-section they will try to get your husband for you. You are awake for the IUBT (most of the time). However I was not awake. They will do an amnio first to determine how anemic the baby is and how much blood the baby will need. That will determine how long the procedure actually takes. Ours took 45 minutes. Then we were monitored for 5 hours (it’s usually 4 hours) and sent home. We had to stay a little longer because I was having BH contractions and they weren’t stopping or slowing down---eventually they did and we went home. During the recovery/monitoring period after the procedure they will give the mother betamethodone (depending on how far along she is) the drug to help develop the baby’s lungs just incase they do need to take the baby early (before 35 weeks)---they are just being cautious and don’t want to take any chances.

What can happen once the baby is born?

This is the part that was the worst for us. At EACH and EVERY appt with our MFM we asked “what will happen once the baby is born?” and we were given the same answer each time “nothing, he will be fine once he’s born there are no complications to worry about.” That’s not always true. The most common effect once the baby is born is that the baby is jaundice. This is treated by either using a biliblanket, phototherapy or a combination of both. If the baby’s jaundice level reaches 25 it can begin to cause brain damage.

The other effect is a low hemoglobin and not producing their own red blood cells. The treatment for that is either IVIG (an immoglubin giving through an IV), a transfusion (sometimes referred to as a ‘top-off’ transfusion) or an exchange transfusion (in this procedure they replace all of the baby’s blood). My son has had several transfusions since birth and each one has taken 4 – 6 hours. Thankfully he did not need an exchange transfusion. Doctor’s do not like to do them because they are very risky---you are replacing a baby’s entire blood supply. That procedure is very lengthy as they remove some of the baby’s blood and put new blood in. This process is repeated until they have replaced all of the baby’s blood.
This is not to say all baby’s will have either of the above mentioned situations but it is possible. Again first effected pregnancy’s tend to go very normally.

Our experience (after my son was born) was the following: Our son was born on Monday July 24, 2006 at Duke University Medical Center and was in the NICU for 36 hours then moved to a special care nursery for 24 hours then moved into a room of his own on the pediatric floor for 3 ½ days—where we were able to stay with him. He was having problems with jaundice and a low hemoglobin. They gave him a dose of IVIG for the hemoglobin and had him on the biliblanket and 4 phototherapy lights. They released him on Saturday July 29 with a bili level (how they measure jaundice) of 14 which was too high. On Monday July 31 we had an appt with his pediatrician and he was immediately sent back to the hospital (thankfully a different hospital, Wake Medical Hospital) as his jaundice level had reached 22.5 and his hemoglobin was 6.8 (low). He was there until Saturday August 5. As soon as we got there they were ready and waiting for us----they had his incubator set up with a biliblanket and 5 phototherapy lights. He was also treated with another round of IVIG and blood transfusions throughout the week. His bili level came down quite quickly at first and then seemed to plateau at 13 but eventually went down to 8 and that’s when we were able to go home on Saturday around lunchtime. His hemoglobin was a like a rollercoaster between 6.5 and 8.5.

Once we left that hospital we followed up with his pediatrician and a pediatric hematologist/oncologist, through University of North Carolina at Chapel Hill Hospital (the specialties go together, don’t get scared that cancer is a possible side effect of anti-e or E----it’s just that blood and cancer go together). We had daily blood tests for a while then down to three times a week, then two times a week then weekly and they slowly tapered off. As of Sept 29 he finally tested negative for the antibody and for the first time showed signs that he was ‘reticing’ (making his own red blood cells). During our time from Aug 5 through Sept 29 he had several more transfusions. But he is okay now----as your baby will be too.



My goal is let other mothers and fathers know they aren’t the only one with this; they aren’t the first one to go through this. I am just trying to pass along the info I learned throughout my pregnancy and once my son was born. When we were first told about this antibody we didn’t have a clue and as you know by now, the info on the internet is very little. If you have any other questions/concerns/comments or just need to get some frustration out---I’m here. Please don’t ever feel alone while you are going through this.