Frequently Asked Questions
Find answers to some of the most frequently asked questions about Alloimmunization and Hemolytic Disease of the Newborn.
During Pregnancy Questions
1. I have so many questions and don't know where to start?
There is a Facebook Group, ISO Moms, with mothers from all over the world that have been in your same shoes. You can get connected here, but please make sure to answer all of the questions to be added.
2. I just found out I have antibodies in my blood, what does that mean?
Everyone has antigens on their red blood cells. You receive one copy from each parent. Having an antibody means you were exposed to an antigen that you don’t carry.
3. I have other kids and haven’t had this problem with them. How did this happen?
There are multiple ways to become sensitized. One way is during a previous pregnancy. Some common ways that can happen during pregnancy are if you had a silent bleed, even so small you don’t even realize it happened, trauma like a fall or car accident, or some blood mixing during the birth of your last baby. Another way is if you have had a blood transfusion.
4. I received a call saying my antibody screen came back with antibodies, what is the next step?
You will need your antibody titers checked monthly until week 26 and then they need to be checked twice a month. If your titers are critical, 1:8 for kell or 1:16 for all other antibodies, then you don't need them checked anymore and you would skip right to having Middle Cerebral Artery scans, or MCA's.
5. My antibody titers came back critical what does this mean?
Titers are a way to tell how many antibodies are in your system. If you have extremely high titers it doesn't necessarily mean baby will do poorly. Baby will need to be monitored with Middle Cerebral Artery scans (MCAs).
6. I need to have Middle Cerebral Artery scans (MCAs) what are these and when do they start?
The MCA scan is an ultrasound that measures the blood flow of the baby's Middle Cerebral Artery, click here for a picture of one. It is a non-invasive way to check if baby is becoming anemic in the womb. They can start between 16-18 weeks gestation. If they are started before 18 weeks they are less reliable. With a critical titer or with a previously affected baby standard of care is to have MCA scans weekly. This resource here will help you track: MCA calculator.
7. Is there anything that can be done instead of an Intrauterine Blood transfusion (IUT)?
When your baby is anemic enough to need a transfusion there is not an alternative aside from delivery and then a transfusion.
8. I was told baby's father needed a test. What test and why?
Baby's Father will need a simple blood draw to see if he carries the antigen. The test is called a phenotype. This will tell you if dad carries the antigen. If dad is negative then baby is fine and you will have a normal pregnancy. If dad is positive you will also find out if he is heterozygous, which means he carries one copy of the antigen or homozygous, carries two copies of the antigen. One copy means your baby has a chance of being negative for the antigen.
9. If the father is heterozygous then there is a 50% chance baby could be negative for the anitgen, is there a way to know?
The first option is the cell free DNA test, it can be done at 10 weeks gestation and is a simple blood draw that takes blood from the mother, it is 99% accurate. This is only available for certain antigens right now. The other option would be an amniocentesis which is when a needle is inserted through your abdomen and into the uterus to extract some amniotic fluid.
10. I have critical titers but MCA scans have been fine, does this mean baby won’t be affected at birth.
Some babies require nothing more than monitoring but some become very sick and require a lot of treatment with phototherapy and transfusions, unfortunately there is no way to predict how a baby will react post birth.
After Birth Questions
1. My baby was just born and the doctor's have told me he has antibodies from my blood. What does this mean? Will he be okay?
This means your body has made an antibody to a red blood cell antigen your baby has and the antibody is attacking his red blood cells. This can cause jaundice soon after birth and also anemia in the following days and weeks. With proper monitoring and treatment your baby will be okay and this should all be a distant memory soon.
2. I have critical titers but MCA scans have been fine, does this mean baby won’t be affected at birth?
Some babies require nothing more than monitoring but some become sick and require treatment with phototherapy and transfusions, unfortunately there is no way to predict how a baby will react post birth.
3. What are protocols for aftercare when it comes to birth?
When baby is born they should run a DAT (Coombs test), total bilirubin, and CBC off of baby's cord blood. They can base treatment and next testing intervals based upon those levels. Bilirubin should be tested at least every 6 hours for the first 24 hours of life.
4. The Neonatologist says baby's bilirubin is too high, what are the treatment options?
You can track your baby's bilirubin levels here to see if they are in treatment range. The first line of treatment is usually phototherapy. Other treatments may be needed including IVIG and an exchange transfusion.
5. What do bilirubin lights do and are they safe?
Bilirubin lights are a type of phototherapy that is used to treat jaundice. Baby must have protective eye wear on when under lights. They are safe and usually quite affective. Your baby is used to dark, warm places so don't be afraid that they dislike the mask, they are used to darkness and it s protecting their eyesight!
6. Coombs(DAT)...positive and negative. What does that mean?
The Coombs test is an antibody screening to test if the antibodies crossed the placenta and are attached to baby's red blood cells.
7.My baby is two weeks old and we just left the NICU. We saw our pediatrician for a follow up and he cleared baby and said we didn’t need any more monitoring is this true?
No, this is not true if your baby has antibodies in their bloodstream. Your baby may need continued monitoring of their bilirubin levels if they are not within normal range and they also will need weekly CBCs through 6-12 weeks of life. Delayed anemia is very common in babies with HDFN.
8. What does it mean if baby needs a blood transfusion?
There are two types of transfusions: an exchange which is usually done because of very high bilirubin levels that aren't coming down with other treatment. This involves two lines going into baby...one where they take blood out and another where they replace the blood. This is done by a skilled doctor. The second is a simple or top up transfusion for anemia. Depending on the hospital and any other things baby has going on you should be able to be there with baby for a simple transfusion. Most first affected babies don't need a transfusion, but monitoring is important.
9. The doctor is wanting to put my baby on iron because his hemoglobin (HGB) has dropped?
Because baby is struggling with Hemolytic Disease of the Newborn (HDFN), that means it is hemolytic anemia, not iron deficiency anemia, iron will not help. For more info please look here under the Iron section.
10. Will my baby require lifelong treatment?
No, the antibodies clear within 3-6 months. If baby had transfusions it might take a little bit longer.
11. I just took my one year old for a routine check up and hemoglobin is low. What does this mean?
It's very common for babies to be slightly anemic at around 12 months old. Baby isn't dealing with the antibodies anymore, so the anemia is most likely iron-related. There can be other things that cause anemia, but they're not as common. Our babies aren't supposed to have iron when they are dealing with the antibodies because of the possibility that they may need a transfusion with iron-rich adult blood. However, once they have moved past that stage, around six months it's okay to give them iron.