I have anti-Jka antibodies. I had to advocate with my own OB, and found that all of the nurses that I had talked with didn’t seem to understand exactly what condition I had. Once my titers hit a certain level, I saw the MFM weekly. I was told that biweekly visits were the norm, but they allowed me to come every week. We made it through the pregnancy with no transfusions.

When I went in for delivery, I had the packet about HDFN printed out – all of the nurses read it when I was in the hospital. It seemed like shifts and the people caring for my baby changed so often that it was hard to know how much knowledge was being transferred between shifts. My doctor had the baby’s specific blood set aside at my induction in case transfusions were needed after birth. If he was given blood with the Jka antigen in it, my anti-Jka antibodies would destroy it. After birth, my son was under lights for 24 hours in the NICU due to high bilirubin levels. Afterwards, we were sent home with a biliblanket for a week

Do you have any advice or encouragement for families dealing with HDFN?

Bring information with you to help others learn about this rare disease.

If you could say something to health care providers everywhere, what would it be?

It’s hard for us to understand patients rights and what to advocate for. As medical professionals, we look to you as the experts to help advocate and communicate to the care team on our behalf. The medical system can be confusing and scary. The more that you educate yourself about our disease, the more high risk patients are put at ease and it makes a world of difference in our pregnancies and birth experience.

If you could ask something of the scientific and research community, what would it be?

Conduct, consolidate and publicly share more research and reports that can help women, healthcare workers and communities with understanding antibodies and the affect they have on pregnancies and babies.