After my daughter’s birth and her short NICU stay, my husband and I were discharged and sent home with very limited instructions on navigating Hemolytic disease of the fetus and newborn (HDFN) .
Hospital admission following extreme fatigue
We were told that her labs were normal upon discharge, so no further testing or specialists were needed. However, after about a week at home, I noticed some changes in my daughter’s behavior. She began sleeping more, not awakening to eat her bottles. She physically could not wake up, no matter how much visible or auditory stimulation that I provided.
I immediately knew something was not right, so I called her doctor. Her doctor wanted to see her immediately, so we went into the office the same day. The doctor did a spot check on her hemoglobin and It was found to be very low. Our pediatrician immediately called the hospital and consulted with the emergency room doctor. The doctors agreed that her condition was urgent, and she needed to be seen at the hospital.
Read more about HDFN treatment and care
Treatment and care
Once we arrived at the hospital, more labs were taken to get a better idea of how anemic she had become since birth. By that time, it was after midnight. I gave the doctors and nurses a full run down of my daughter’s medical history, including previous intrauterine blood transfusions and premature birth. Due to the hospital not having a pediatric hematologist, they transferred us to Texas Children’s Hospital. Four very long hours later, we arrived and were admitted.
We were checked in to the Ronald McDonald House (RMH) in the hospital so that we could rest after the four hour drive and hard day we had to endure. That night, we got a call about our daughter’s hematocrit and red blood cell value dropping below the transfusion threshold. They wanted us to verbally authorize a blood transfusion. We consented to the procedure and then ran to her bed side.
The transfusion process
The process of a blood transfusion is very slow. They gave her one unit of blood in three hours. I was accustomed to the a much faster transfusion of one unit in less than 30 minutes. After the transfusion, I could almost immediately see a change in her skin tone. She was more alert and hungry.
I can only describe the change in my daughter’s health after the transfusion as miraculous. The NICU team monitored her for 24 hours to make sure she did not have any adverse reactions to the blood that she was given. After the monitoring period, we were discharged from the hospital. This time, we were referred to a pediatric hematologist to monitor her HDFN. We began seeing the hematologist the week after our daughter’s emergency transfusion. The doctor was very surprised that my daughter was not referred to a pediatric hematologist upon discharge from the NICU.
After that, my daughter endured two additional blood transfusions, but this time, they were administered in a more controlled environment: an outpatient transfusion facility. In total, our daughter had six blood transfusions before being cleared from her hematologist. I believe she would have needed more transfusions had she not received life saving medication. Our family is extremely thankful for blood donors who ultimately saved our baby girl’s life.
