A journal is an effective way of keeping track of the treatment and symptoms experienced by your hemolytic disease of the fetus and newborn (HDFN)-affected infant.
At times, it can be difficult to remember exact events and dates in the often stressful context of the NICU. Journaling can help you keep track of everything you want to remember that also serves as medical notes to share with your healthcare team.
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.
The importance of keeping a journal
People living with complex health or symptom burdens often keep a written record of their symptoms as they occur. It takes the pressure of trying to remember the details at a later stage and it provides first-hand, real-time information on the evolution of symptoms, the efficacy of medication and the onset of side effects from medication.
A parent with a child affected by HDFN can also utilize a journal. For example, if an infant shows symptoms of jaundice or anemia, doctors may ask how long it the symptoms have occurred. A parent who kept a log of daily symptoms may be able to give the doctor more accurate information than one who didn’t.
Journals aren’t only good for logging symptoms. For example, when test results are available, such as Coombs test results, reticulocyte counts and bilirubin levels, they can also be recorded in the baby’s journal. The parents then have a record they can reference and can track their evolution.
Learn more about HDFN treatment and care
Having a detailed account of your HDFN-affect baby’s experience helps your communication with your healthcare team and the NICU medical staff. It guides treatment decisions and allows you to play an informed role in managing your baby’s care.
Information to track in a journal for your HDFN-affected baby
Any information that concerns your baby’s experience is of value. Start with your baby’s name, date of birth and your names and contact details as parents. Your healthcare team’s details are also essential.
Then, keep track of the following:
Symptoms: how they are evolving, improving and hopefully, dissipating.
Treatments: which treatments, associated dates, side effects and your observations on their impact.
Lab results: all results received from blood tests but also any feedback on IVIG, phototherapy, erythropoietin or blood transfusions.
Your baby’s behavior: a daily record of the feeding, sleeping, level of fussiness, skin color, energy levels.
Doctor visits: your exchanges with doctors, as well as their comments and recommendations
In terms of format, keep things simple. If you prefer a written journal to a digital version, do what makes sense for you. Be consistent and maintain a daily record, as it may be valuable for your child’s ongoing care and medical follow-up.
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