The Newborn and Infant Stage
Oftentimes there is a misconception that if your titers stay low or you make it to the end of a pregnancy without intervention there is no longer any concern. We also will sometimes hear that baby's provider team believes that even though they needed intrauterine transfusions they no longer need monitoring or treatment after they are born.
These misconceptions can have CATASTROPHIC outcomes!
All babies who are affected by maternal red blood cell antibodies need close monitoring after birth. Whether this is during the newborn period only or also through infancy will depend on several factors, but is is just as essential to follow through with this as during pregnancy. In fact you may find yourself needing to be even more of an advocate than during pregnancy.
During delivery expect your care team to be paying close attention to how baby is tolerating labor. A severely affected baby may not tolerate a vaginal delivery and delivery plans may have to change unexpectedly. At delivery expect your baby to be assessed quickly. Their providers will be looking for signs of severe anemia and hyperbilirubinemia(jaundice). Also expect them to run blood laboratory tests to assess these things. The tests will likely include a DAT(direct anti globulin test), blood type and antigen typing if unknown, a total bilirubin and also a baseline direct bilirubin, as well as a CBC(complete blood count) with differentials. They may also opt to run a metabolic panel at this time depending upon baby's clinical exam. If you baby needs stabilizing this will happen now too.
During your hospital stay:
a mildly affected baby:
During yours and baby's hospital stay be prepared that your baby may spend all or some of their time in the NICU (neonatal intensive care unit). When this happens it is make sure that your baby receives the level of care they require based upon how they are being affected by the antibodies.
If your baby is DAT positive or showing signs if being affected by the maternal red blood cell antibodies then you should expect for them to continue to receive blood draws for both total bilirubin and the CBC. Typically bilirubin will be checked every 6-8 hours in the first 48 hours of life and CBC every 12-24 depending upon previous results.
During your hospital stay:
a moderately affected baby may need:
If your baby is born and is stable enough to room in with their parents or be in the well baby nursery, they may or may not still require NICU care as the hours progress.
Oftentimes babies who are affected by maternal red blood cell antibodies will be born well, but as the hours progress they may need phototherapy, IVIG (intravenous immune globulin), or even an exchange transfusion in order to control their bilirubin levels and prevent brain damage. They also may be born without anemia, but within hours or days become anemic and require a red blood cell transfusion.
This is why, just like during pregnancy, proper monitoring is extremely important.
During your hospital stay:
a severely affected baby:
If your baby is born and severely affected by the antibodies they will be quickly assessed and stabilized however needed.
This may feel like a scary and hectic time for you and your support persons. Some things that can be present when a baby is born with severe HDFN are hydrops or ascites (types of fluid buildup in the baby's body). This can cause respiratory distress, but make ventilation difficult. If this is the case your baby's care team may need to drain some of the fluid in order to stabilize your baby's breathing or ventilation.
They will also likely put in several IV lines for baby, including umbilical lines, which will be used to deliver medications, fluids, and and blood products that baby needs.
Some baby's are also born with severe hyperbilirubinemia (jaundice) that requires an immediate exchange transfusion and phototherapy treatment. Feeding may be interrupted during some of these treatments, but be assured your baby's care team wants you to hold and feed your baby as soon as it is safe for them!
Have a discharge plan including follow up in the next 12-24 hours:
When your baby is stable for discharge it is essential to work with your inpatient team to establish outpatient care. This can be in the form of an appointment with your baby's pediatrician if they are prepared to care for a baby with HDFN from small cell antibodies, or an appointment with a pediatric hematologist, or both. This can also look like outpatient visits to the NICU.
What is most important is that you have a clearly written plan of care for post discharge to have your baby seen within 12-24 hours after they leave the hospital. This is a shorter interval to a well baby, but we suggest this is especially important as many baby's in our communities have negative outcomes when this close care plan is not established.
In particular it is suggested that you have this care plan set up if your baby is less than 6 days old at discharge, if your baby has discontinued phototherapy in the last 24 hours, or has had a red blood cell transfusion before or after birth.
The first 6 weeks
It is very important to continue to monitor your baby even after the first few days of life.
Total bilirubin should be monitored until it is both below phototherapy treatment levels and has dropped levels without treatment for two labs in a row.
Your baby's provider will need to monitor them with CBC's at least every 7-10 days for the first six weeks of life. This will allow them to know if your baby is becoming anemic or having secondary neutropenia due to HDFN. Even if your baby has a normal hemoglobin at birth or is no longer jaundiced they can still become severely anemic and require a blood transfusion. These blood draws are essential to keeping your baby healthy. If at 6 weeks your baby has reached nadir and their hemoglobin and neutrophil count has stayed within normal limits (WNL), most providers will feel comfortable to stop monitoring at this age. If it has not then they should continue to mentor every 7-14 days depending on rate of drop. Once baby's hemoglobin has returned to WNL and has risen without transfusion two times consecutively and neutrophil count is back to normal they will likely be discontinue monitoring hemoglobin.
Babies with HDFN
Post birth care can look very similar to a "typical" full term, uncomplicated pregnancy. It can also be filled with unexpected experiences. We have gathered some photos so you can get a visual. We think it is important to remember that this is a short season in our baby's lives and that the monitoring and treatment is medically necessary in order for our babies to live full, healthy lives. Please slide through to see some photos of post birth care for a baby with HDFN