Anti-Kell Antibodies: A rare but serious risk for babies.

I had taken my time finding a midwife. It wasn’t that I hadn’t made it a priority, it was that I was being so rigorous with my interviewing and hadn’t been able to find someone I felt safe with this time after my post-partum hemorrhage from mismanaged third stage last time. I finally found a good midwife and we did our first check up together at about 16 weeks pregnant. I went in to get my blood work and didn’t think anything of it really.

Then I got the call. “I got your blood results back.” “Okay, cool.”

“Well… how much do you know about blood types?” “Not all that much. I know I’m A Positive.”

“Well… you’ve become anti-K. Within the blood types there are antigens. There are at least a dozen of these. Sometimes during a blood transfusion you could be given blood with an antigen that your body forms antibodies to, and attacks. Which is a normal response in the body.” “Well… you’d think they would check that more thoroughly!” “Sometimes during emergencies they aren’t able to find a perfect match and they need to use the blood type closest to yours. Now, try not to freak out. The odds are in your favor… but the other possibility is that your husband is Kell positive and you formed the antibodies from your first pregnancy. Which would mean lots of testing and extra monitoring of your baby.” “….What do I do?” “Your husband needs to have his blood tested…. and you can type into Google Anti-Kell and you should be able to learn more about it. Hemolytic disease of the newborn is something you may come across. Again, try not to worry. The odds are in your favor, only 9% of people are K positive. If you need to talk please call and I can answer questions. I am sending a referral to the high risk specialists in Orlando. “Thank you… have a good weekend.” “You too.”

I didn’t know what to think. At first I felt intense anger at the idea that I could have been given blood that my body rejected basically! But the more I read, the more I started to hope that it was from the transfusion… Because if my husband tested positive for Kell than our baby had a 50/50 chance of being positive for Kell… meaning that my body was attacking our baby. Nothing can make you feel more physically ill than when I read that my body could hurt our baby.

You see… anti Kell is a bit like Negative RH blood, which is more common and gets most of the attention. Just like RH, the baby and mother are mis-matched. But with RH the mother can be given a shot to lessen her antibodies formed against the baby. Currently there is no shot for Anti-Kell, although it can become much more serious. Some women’s antibodies are so strong that a pregnancy cannot sustain, leading to miscarriages and stillbirths around the second half of the second trimester. If a mother is Anti-Kell and a baby is positive Kell such complications can arise that the baby becomes anemic. Blood transfusions must be given to the baby while still in the womb, until the baby can survive outside of the womb around 34 weeks. Then the baby must be taken as early as possible to stop the mother’s body from the attack. The baby may still need more blood transfusions after this. I felt angry, scared, worried, sad. There wasn’t much information out there. Less than 9% of people are Kell positive. I somehow got a K positive donor… or my husband and first baby were K positive. It seemed so unlikely. Most Kell antigens come from Nothern Europe.. so I automatically started going through my husband’s genealogy. His grandmother was from Ireland. I felt like I was going to throw up. I wondered what this meant for our dreams of a big family, I wondered what this meant for this baby and our daughter. I was suddenly aware of the lack of movements with my baby. How could there not be more information and treatments for this problem? Kell positive babies had an 80% chance of survival. 80% sounds good on paper… but with all our advances in medicine… what about the 20% who wouldn’t survive?” How is it that my husband or the blood donor was part of the 9% of people who are Kell positive? Does that mean it’s more like a 50% chance between the two of them… where it came from?” I didn’t feel like the odds were so favorable.

We went for a walk out to the neighborhood pier. Even the peaceful water couldn’t calm my nerves. I stared out over the water searching for some peace. Reaching out to talk to God, praying that the baby was safe and healthy. We finally got to sleep that Friday night. It was Mother’s Day weekend. Our daughter unusually awoke at 5AM instead of 7AM. As she dozed back off again beside our bed we tossed and turned. I tossed and turned, tossed and turned. I had a deep nauseous gut feeling. He gently stroked my back, he buried his head in my hair. I felt like we were both thinking about the exact same thing, but I couldn’t speak about it again. We had agreed to call the midwife once more that Saturday and ask how urgent his blood work needed to happen, he was going through major stress at work and we needed to figure out how to make the trip to get the blood work done. (We are 40 minutes from any labs.)

I called that Saturday, “I’m so sorry to call on a Saturday. My husband just needs to know what he can do and how urgent it is. I told him I thought it was very urgent but I want to know your thoughts. We’re going to Texas on Thursday and Friday.” “I can get the labs e-mailed to you, and we should try to get him in for some answers as soon as we can so we know where to go from there. You still need to go to the Maternal Fetal Medicine in Orlando though- even if he is Kell negative we need to know what’s happening with the antibodies. Why this is happening, and have the baby looked at to make sure baby is doing okay.” We hung up a few minutes later.

I thought that I would probably be in the clear if he was negative. She had told me that she’d sent out a question to her midwives association online and they had told her there was a 50/50 if my husband was negative that either everything is fine, proceed normally, or Maternal Fetal Medicine will want to closely monitor to make sure the baby hasn’t reacted from these antibodies for whatever reason.

So I had one 50/50 it was my husband or the blood donor that was K positive… one 50/50 the baby was positive if he was positive. And one 50/50 that if he was negative everything would be normal. Let me tell you something, 50/50 is really hard to come to terms with.

I am used to things I can control. What I eat- what supplements I take. I read Wise Traditions and read about fearless home births and fierce natural mamas. I research everything and make informed decisions about everything. I follow advocates for natural birth, home birth, breastfeeding, vaccine awareness. I didn’t like the idea of inductions for labor. I don’t like all the newborn interventions. I am used to being against Western medicine, and now… I feel so stupid, having thought that I could ever control anything at all. Being in a completely new position, that… these babies wouldn’t survive without intervention. That these babies must be taken early, probably by C-section and closely watched, helped, monitored, and given blood transfusions so they can survive. It makes me feel so out of place, in new territory. Scary territory. A place I never imagined I’d be. It’s made me realize that you can do all things “right, healthy, natural,” and things still aren’t ever guaranteed to go your way. Last week I was worried about coping methods for natural labor, renting a home birth pool, and hypnobabies, and this week I am worried about my baby’s life. Where, how, if it’s natural or a C-section, if it’s induced, if I can breastfeed right away, none if it even matters anymore I just want the baby to be safe. 

He would go test at the lab early Tuesday morning, and we would have to wait the longest few days in the world to get results, and learn anything about what would happen to us and our baby, if anything. I felt such deep, unseated pain at the uncertainty for our baby.

It was my first Mother’s Day. I felt so loved. My husband made me an omelette, I got a nice bath and some flowers that are the same colors as our wedding flowers, yellow, white and orange. It was hard not to wonder what the anti K antibodies mean for our baby. I feel so anxious to have an answer about my husband’s blood type.  It’s so hard to think things could take a turn after these results so quickly. Instead of planning a relaxing home birth, I am now wondering if my body is attacking the baby… if the baby is anemic. I’m thinking about the specialists we have to see, all the blood that needs to be drawn, transfusions, doctors and hospital visits every week. All I ever want is to spend time with my husband. I see how stressed he is, and worry how this much more stress will effect our life. I want to hug our daughter and kiss her bald spot on the back of her head and for John to hold me and the new baby to be safe and healthy.

I didn’t realize until now how much someone could take that for granted.

I will continue writing these posts as we learn more about this condition. If you want to help- please send positive thoughts and prayers for the health and safety of our baby. To see what happens please continue to Part Two.