After coming home from the NICU, my family and I had to adjust to a new normal, and we quickly realized bringing home a baby with hemolytic disease of the fetus and newborn (HDFN) was unlike bringing home a completely healthy baby.
There were certain things that the NICU nurses taught us that we had to take and adapt to fit my daughter Benelli’s specific needs. Those included feeding strategies, how to wake her up and how to keep her bilirubin levels down. HDFN caused her to become anemic. She never wanted to wake up for feedings, and she rarely would cry or show any interest in the world around her. She simply slept, because she had no energy to do anything else.
What is HDFN?
Hemolytic disease of the fetus and newborn (HDFN) is an immune-mediated red blood cell disorder that occurs when a baby’s RBCs break down quickly, which is called hemolysis. HDFN is caused by a mismatch between a mother’s and her baby’s blood type (A, B, AB, or O) or Rhesus (Rh) factor (Rh-positive or Rh-negative) during pregnancy.
I also had to adapt. I was not able to work for 16 weeks due to her medical condition and the traveling required for medical appointments We had to travel 424 miles round trip once a week for her hematologist check up. Generally, this appointment was every Thursday at 8:00 a.m., and we were told they were scheduled so early in case she needed a blood transfusion. We would leave around 4:30AM to make it to that appointment.
We also would have blood work checked by her pediatrician once a week. These were scheduled on Mondays to check and make sure her levels did not dip over the weekend. This only occurred once, in which our local ER transferred her to Texas Children’s for an emergency transfusion.
Learn more about HDFN treatment and care
I also took my daughter to monthly cardiology appointments to check on her heart. She was born with a small hole in her heart and a heart murmur. Having HDFN can cause additional heart problems, including heart failure.
With all of these appointments, I would have to miss two to three days of work a week, which was not feasible to keep a job. Luckily, FMLA kept me from getting fired, but I did have to petition for an extension. I had to give my daughter 90% of my attention, but it was all worth it in the end. After my blood cells died from her body, she was awake, alert, thriving, gaining weight and meeting milestones. I was able to return to work and adapt our routine to a little bit more of a “normal” lifestyle.
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