Naomi’s Anti-K Story

Naomi’s Anti-K Story

My Anti-Kell Alloimmunization Story:

I discovered I was alloimmunized at 13 weeks with my second child via a prenatal profile LabCorp test ordered by my midwife. I got an antibody result of Anti-Kell with a titer of 8. After speaking with my midwife, who let me know I was being referred to a MFM specialist an hour away, I immediately went and googled anti-Kell and found….essentially nothing. No Mayo Clinic or WebMD article. I panicked big time. Was this THAT rare? Was my baby going to be okay? Finally on page 3 or 4 of my google search I found Bethany Weathersby’s blog about her daughter Lucy. Thank goodness I found that! Because through Bethany I then found the Allo Hope Foundation and the associated Facebook groups, etc.

Since I have never had a transfusion or other event where my blood might have mixed with someone else’s outside of the birth of my son, we knew that my husband probably had the Kell antigen. We had him tested and sure enough, he was heterozygous for the Kell antigen, which meant there was a 50% chance our girl was positive for Kell. Our MFM specialist clinic recommended we have an amniocentesis to determine if our daughter was positive for the Kell antigen. We spoke to them about the cell free fetal DNA test, but unfortunately they informed us that they would not consider it to be diagnostic enough to make clinical decisions based on and therefore pushed us to do the amnio — which we decided to do.

The amnio procedure for me was unfortunately painful (it triggered a muscle to cramp severely) and caused me to have contractions, but they stopped about an hour after the procedure and did not proceed. The result of the amnio did in fact show that our daughter was positive for the Kell antigen. So we began weekly MCA doppler scans at 16 weeks. At 27 weeks, Sadie had her first MCA scan above 1.5 MoM, and we proceeded with her first IUT. Our hospital had us come in to Labor and Delivery (not the OR) for IUTs. Each procedure went fairly smoothly — the first being the most stressful. For the first procedure, the lab was not efficient at getting us the results to understand how much blood would need to be transfused, and so the needle was in for much longer than typical (45 min to an hour). I also had pretty consistent contractions during and for a bit after. Finally, I had an anxiety attack post procedure while I was still being monitored — scary! But by the next day, I was just a little sore and otherwise feeling good.

Sadie needed 3 IUTs in total, with the last one (at 32 weeks) being almost medically unnecessary as her starting hematocrit was at such a good place at 37. Since her hematocrit was so high to start, the team decided to allow us to wait a full 4 weeks prior to induction assuming she passed a biophysical profile weekly — which she did with flying colors. Huge answer to prayer!

At 36 weeks, I went in to Labor and Delivery for an induction. The induction methods used were a Foley bulb, membrane sweeping, pitocin, and manual breaking of my water. I labored for about 18 hours and then delivered our little girl after minimal pushing at about 6:30AM the next morning. She was 6 lbs 11oz, perfect and so very sweet! After about 2 hours of family cuddles while waiting on lab results, they took her down the the NICU to treat and monitor her for hyperbilirubinemia. She received one precautionary round of IVIG that day and was on triple lights for about a day and a half and then on a bili blanket for a few more days in the NICU. Her bili remained at moderate levels for the most part, and we stayed in the NICU for a week. Our neonatology team was particularly conservative in their monitoring approach or we likely could have gone home earlier (the last two days they really only kept her because they did not want to release her until they saw weight gain steadily increasing and bili levels (even though they were low) steadily decreasing — which is not something you usually see even with totally healthy infants until day 6 or 7). But at one week and one day, we got to go HOME!!

For the next few weeks, we went to the pediatrician weekly for check her hemoglobin levels and weight gain, which has been going well! She is now one month old and over 8 lbs, happy, and healthy and working on building up her baby red blood cells (reticulocyte count) and hemoglobin levels. While they are a bit low, we are hopeful they will stay high enough to avoid further transfusions. What started as an incredibly terrifying news for us turned into a journey blessed throughout by the care of this little girl’s Creator and our amazing support system of family and friends!

What advice would you give to other mothers?

My advice would be take things one day, week, etc. at a time. Surround yourself with others who have been through similar experiences, and people who can encourage you/pray for you. Expect that someone (meaning well) might say something that does not feel helpful—not everyone is going to get it. Finally, it is okay to grieve the loss of a “normal” pregnancy and birth experience—doing so doesn’t mean you are any less excited for your child.

If you could ask the doctors and researchers something, what would it be?
I would love to understand how we can move in the direction of improved treatment plans and how we could begin to reduce the amount of cases caused by a lack of intensive testing prior to transfusing.

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