It can be difficult to explain to family and friends the medical terms and potential complications that may arise with alloimmunizationAlloimmunization When a person’s immune system develops antibodies against foreign antigens from the same species—such as when an Rh-negative mother’s body forms antibodies against her baby’s Rh-positive red blood cells. and hemolytic disease of the fetus and newborn (HDFN).
I have found it’s easiest to use layman’s terms instead of medical terms and to be very clear and direct in my explanation.
What to say when asked to explain your baby’s diagnosis
Here is how I explained my baby’s HDFN diagnosis to avoid any confusion or miscommunication:
“My baby and I have incompatible blood types. My blood cells have identified and started attacking babies blood cells, causing the baby to become anemic in the womb. AnemiaAnemia A condition that occurs when the body doesn’t have enough healthy red blood cells to carry oxygen to its tissues. In HDFN, anemia occurs when maternal antibodies destroy fetal red blood cells. can be dangerous for a fetus, as they cannot create new blood cells fast enough to replenish the dead blood cells. This could lead to heart failure, fetalis hydrops, or in severe cases, death.
Luckily, there are interventions that can be taken to save the baby. One intervention is aninteruterine blood transfusion (IUTIntrauterine transfusion A procedure that delivers donor red blood cells to the fetus through the umbilical vein to treat severe anemia caused by HDFN.). This is a procedure in which they give baby blood by injecting it into the umbilical cord. This replenishes blood cells that were killed by my blood cells.
Doctors monitor anemia by using an ultrasoundUltrasound An imaging test that uses sound waves to monitor fetal growth, development and signs of complications during pregnancy. machine to check MCA doppler which is the blood flow in the baby’s brain. If the blood is moving fast, the baby is most likely anemic. Slow blood flow is good, meaning there are a lot of thick flowing blood cells. Based on the results of a middle cerebral artery (MCA) doppler ultrasoundDoppler ultrasound A non-invasive scan that measures blood flow speed in the fetus' brain to diagnose anemia. Specifically, it checks the middle cerebral artery peak systolic velocity (MCA-PSV). that measures blood flow in a fetus’s brain, a maternal fetal medicine doctor will recommend an IUT.”
Learn more about HDFN causes and risk factors
Handling reactions from your loved ones
I feel it is important to add that there is nothing that a mother can do to prevent anemia as a result of alloimmunization. I was always treated differently after my diagnosis by my family and friends. I was told to rest constantly. I finally had to tell them that no amount of rest or help was going to prevent the baby from becoming anemic. This was an important turning point for my mental health at the time. I had become depressed sitting and being told that I could not do this or that.
I believe it is important to live your life as normally as possible while pregnant due to the very unusual birth and NICU stay postpartum. I was very thankful for our friends and family that were able to show up and support us after our child’s birth. This was the time in which we needed the most help. From our experience, I believe that explaining the medical condition to loved ones is the best way to be open and build a great support system for our postpartum needs.
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