Anti-Kell Antibodies

* If you are dealing with anti-kell antibodies and are searching for information, don’t be freaked out or discouraged by my story. Your baby will probably be fine as long as you educate yourself and make sure you and your baby get the correct treatment. Make sure to check the bottom of the page for the steps you need to take to ensure you are getting the best treatment possible.

Before developing anti-kell antibodies, I had two normal pregnancies and delivered two healthy baby boys, both born at 41 weeks. When I was pregnant with my third baby I discovered at nine weeks that I had anti-kell antibodies. I had never heard of anti-kell antibodies and couldn’t find much information online. It was terrifying. Long story short, I have had two anti-kell pregnancies in the past three years with VERY different outcomes. Lucy was stillborn halfway through the pregnancy. My next baby, Nora, was born healthy at 37 weeks 6 days and has no lasting effects from the anti-kell antibodies that tried to kill her in the womb. Over the past three years I have done a lot of research and asked a lot of questions, so I have a much better understanding of this disorder now. I will do my best to explain anti-kell antibodies and how they work. The more you understand, the better you can advocate for your baby and keep your baby safe.

Disclaimer: I am not a doctor or a medical professional. This is what I understand about anti-kell antibodies.

Kell is an antigen found in some people’s blood, so basically it’s kind of like a blood type. It’s not dangerous at all. My husband, Josh, and my children, Asher, Lucy, Nora and possibly Liam all have the kell positive blood type. About 9% of caucasians are kell positive. I’m not, and that’s where the trouble begins. My pregnancies with Liam and Asher were totally normal and healthy because I did not have anti-kell antibodies yet. When I gave birth to Asher (who has kell positive blood) some of his blood leaked out into my body. Because my blood is kell negative, my body saw Asher’s blood as something foreign and dangerous. My body thought Asher’s blood was a virus (even though it wasn’t.) When our bodies get a virus we make antibodies. Antibodies are like the soldiers who go and kill the virus. When we get vaccinated, we are given a little bit of the disease, then our bodies produce antibodies to kill it. After the vaccination, our bodies are well armed with antibodies to kill the disease and that’s what keeps us safe. So, because my body thought Asher’s kell positive blood was a virus, I produced anti-kell antibodies to destroy it. This is called being sensitized. It didn’t hurt Asher because it happened right as he was being born. He got out just in time. There is another way that women can become sensitized. If a kell negative woman is given a blood transfusion with kell positive blood, her body could react the same way mine did when I gave birth to Asher- by creating antibodies as a response to being exposed to kell positive blood.

My husband found out through a simple blood test (done by my regular OB) that he is heterozygous for kell, which means he has the recessive gene. This just means that each one of our kids had a 50% chance of being kell positive like Josh or kell negative like me. The only way the antibodies can hurt the baby is if the baby is kell positive. If the baby is kell negative, the antibodies cannot affect him/her and it will be a “normal” pregnancy. Somehow, we always seem to get the wrong 50% because our last three kids have all been kell positive. If Josh had been homozygous for kell, our kids would have all had a 100% chance of being kell positive. Most people who are positive for the kell antigen are heterozygous like my husband.

My body will always produce anti-kell antibodies, I can never get rid of them. I have basically been vaccinated against my husband’s blood type, so anything inside my body with his blood type will be attacked by my antibodies. Unfortunately, like I mentioned earlier, Lucy got her Daddy’s blood type. She was kell positive. She was a healthy, kicking girl throughout the first trimester and the beginning of the second. Babies don’t produce their own red blood cells until the end of the first trimester/beginning of the second. When Lucy started making her own blood, my anti-kell antibodies crossed the placenta and recognized her blood as something dangerous. The antibodies started attacking her blood. This makes the babies very anemic and eventually can cause fetal hydrops or even death. Usually these babies have at least an 80-90% chance of survival because the mother’s antibodies are not as aggressive as mine were. The way they measure the anti-kell antibodies is something called a titer (pronounced “tight-er”.) When a mother’s titer reaches 1:8 it becomes critical for the baby. This just means that the antibodies can affect the baby at that level. My titer was 1:1,024 from the very beginning of my pregnancy with Lucy.

I have heard different “facts” about antibody titers from different people. Some believe that the titer rises as the antibodies attack the baby, so a rising titer indicates a kell positive baby, and a low titer indicates a kell negative baby. Some believe that every subsequent pregnancy will be more dangerous because the titer will be higher. The one thing about titers that everyone agrees on is that they are unpredictable and are not to be trusted. My titer never changed throughout my pregnancy with Lucy, during the two years when I wasn’t pregnant and during my pregnancy with Nora, who was kell positive also. It has always been 1,024. Because of this, Dr. Moise believes that a subsequent pregnancy would be equally as dangerous as it was for Nora and Lucy. In general, the higher the titer, the more dangerous it is to the baby, for example, we can assume that a woman with a 1,024 titer will have a much higher chance of having an affected baby than a woman with a titer of 2. However, the extent to which the baby is affected relies on several different factors besides the titer- how aggressive the antibodies are, how the baby handles the antibodies, whether there are other antibodies present, the baby’s gender (girls tend to do better than boys, supposedly) and especially, the monitoring and treatment given during the pregnancy. Just because your titer is very high, it doesn’t mean you are going to lose your baby, and it doesn’t mean your baby is kell positive. Just because your titer is low, it doesn’t mean your baby is safe and it doesn’t mean your baby is kell negative. The best thing you can do for your baby is find a good MFM (maternal fetal medicine specialist) who is knowledgeable about these antibodies (or who is willing to learn), educate yourself on the disease and make sure you are getting the right treatment and monitoring during the pregnancy.

The way they treat these babies is to monitor them very closely and give the babies an intrauterine blood transfusion if they get anemic. Doctors can tell when the baby starts getting anemic by doing an MCA scan. MCA stands for middle cerebral artery. It’s the central artery in the baby’s brain. A really powerful ultrasound is used to measure the blood flow through this artery. If the blood is moving too fast, they know the baby is anemic. They give the baby an MoM (multiples of median) score that shows how anemic the baby is. The median MoM is 1. If the baby’s MoM starts creeping up and gets to a 1.5 that means he/she is anemic. Once the MoM is 1.5 or over, the doctor will do an intrauterine blood transfusion (IUT) on the baby to resolve the anemia. Usually babies aren’t affected until late in the second trimester or early in third trimester, but in extreme cases they can be affected as early as 14 or 15 weeks. The baby can’t be harmed by the antibodies in the first trimester. The earliest loss I have seen from these antibodies was at 15-16 weeks. Lucy had her first MCA scan a day or two before 18 weeks and her MoM was 2.5. She was severely anemic. They did an IUT on her the next morning.

When an IUT is performed, the doctor basically sticks a really long needle through the Mom’s belly into the uterus and (hopefully) into the baby’s umbilical vein. They put fresh, kell negative blood packed with red blood cells into the baby. If the baby is too small and the doctor can’t get into the vein they just stick the needle into the baby’s abdomen and put the blood there. It’s not as good in the belly, but still helpful. They were able to hit Lucy’s umbilical vein and give her lot’s of good blood. Because she was so anemic they also went in a second time and put extra blood in her abdomen. It should have been a huge success, but she died a week later. We still are not exactly sure what happened. One doctor really thought I had had a fetal maternal hemorrhage, which is random and can also cause fetal anemia. Most doctors think Lucy was just too sick by the time they did the transfusion and they couldn’t save her or something went wrong during the IUT that caused her to bleed out. Dr. Moise thought that my antibodies were just too aggressive for Lucy to survive without early intervention.

With Nora I started plasmapheresis and IVIG around 10 weeks. These treatments were able to protect Nora from my antibodies until she was big enough for a safe IUT. She had five IUTs by the time she was born. When Dr. Moise performed Nora’s IUTs he always put blood into the umbilical cord and into the belly. This was so that the blood would get to Nora immediately through the umbilical vein and then slowly over several days/weeks as her body absorbed the blood in her belly. Her first IUT was at 24 weeks and I believe her last one was around 35 weeks. If you want to know more about the IUT procedure you can read about my transfusions with Nora here. Dr. Moise always rescanned Nora the day after an IUT to make sure she handled the procedure ok. Usually, if there is a complication from the IUT it happens within the first 24 hours after the procedure.

One last thing- a lot of people ask me why I couldn’t get “the shot” to prevent my body from making the antibodies in the first place. There’s another similar disorder called Rh incompatibility that is much more common. Because it’s so common they developed a shot called rhoGHAM that they can give to the mother before she gets sensitized and it keeps her baby safe (although it does fail at times and some women still end up developing anti-D antibodies.) There is no shot for kell. After Lucy died I asked my doctor why they haven’t developed a preventative shot for kell like rhoGHAM. He said it doesn’t affect enough people. I asked him what it would take to develop one and he said, “Money. Lot’s and lot’s of money.”                                                                                                                      UPDATE- Dr. Moise is currently working on a new treatment for women with anti-kell antibodies (and other antibodies.) There might ACTUALLY be a shot one day that can protect these babies from anti-kell antibodies. You can learn more about this possible new treatment HERE.

* For women with anti-kell antibodies: Please don’t be scared by my story. What happened to Lucy is VERY rare, almost unheard of. Your baby will probably be fine as long as you make sure you are getting the right treatment. I’ve heard that most babies in a kell sensitized pregnancy have a great survival rate. If you just found out you have anti-kell antibodies you need to do several things:

  • Find out what your titer is
  • Have the baby’s father tested for the kell antigen (NOT anti-kell antibodies)
  • If the baby’s father is kell negative, the baby cannot be harmed by the antibodies and is safe.
  • If he is positive for the kell antigen, have him phenotyped to find out if he is homozygous or heterozygous for kell to know if your baby has a 100% chance (homozygous) or a 50% chance (heterozygous) of being kell positive.
  • Get a referral to an MFM
  • If you have a titer of 1:8 or higher, make sure you have your first MCA scan between 16-18 weeks and weekly after that. If your doctor wants to wait until after 18 weeks for the first MCA scan, you should insist on it and if they won’t budge, ask to be referred to a hospital that will. With Nora, I had my first MCA scan at 15 weeks.
  • Buy a notebook or journal and keep it with you at every appointment and every procedure. Write down all the information your doctor gives you. Think of all the questions you want to ask before each appointment and have them written down in the notebook. Write down all the answers. (I also had encouraging Bible verses written down that helped a lot.)
  • Remember that YOU are the only person who can speak for your baby. You are your baby’s voice. If you are unsure about something, don’t be afraid to ask the doctor. If you feel like something might not be right, go in immediately and have your baby checked out. Don’t be scared to look stupid or be annoying. That doesn’t matter when you compare it to the worth of your baby’s life. Read this post to avoid making this very common and dangerous mistake many women make.
  • If you have lost a baby to antibodies before, have had a severely affected baby before or have an anti-kell or anti-D titer in the hundreds or thousands, read THIS
  • Definitely join our ISO-Moms group on Facebook to meet other women who have been through this type of pregnancy, who can answer any questions you have. It’s a secret group, so you have to become my friend on Facebook in order to be invited (you can unfriend me after I add you to the group if you want.) My name is Bethany Weathersby, so come find me if you want to join! Just be sure to send me a private message explaining who you are.
  • Feel free to email me if you have any questions about anti-kell antibodies  bethanysk55@yahoo.com or just ask your question in the comment section below.
  • Remember that ultimately your baby’s life is in God’s hands. Try to rest in the fact that He loves your baby more than you do.
Advertisements

251 thoughts on “Anti-Kell Antibodies

  1. This is my third pregnancy with Kell antibodies.

    My girls are fine, both have my same blood, so they never were in any real danger – thank God.

    I intend on having an amniocentesis to find out this little one’s Kell type, hopefully it will again be like mine.

    I’m almost 14 weeks pregnant, and hope the amnio will enable me to have a less stressful pregnancy than the other two…

    • Hey Maria, that is awesome that your last two babies were kell negative. I’m assuming the father is kell positive? Do you know what your titer is? If you want to check the baby’s blood type you can also have your blood tested (has to be sent off to Europe) to find out whether baby is kell positive or kell negative if you want a less invasive choice. You can do it at 14 weeks and I can give you all the info you need to have it done. I keep meaning to post the info on my blog but haven’t gotten around to it yet (horrible, I know!) Or you can just do the amnio. We had the amnio done with our baby Nora and it was fine. Had the results back at around 17 weeks

      • I can’t remember exactly which one of us is positive (the initial testing was done 5 years ago, and I just got the Coombs test results yesterday, so I have to get my facts straight again now), but the children have a 50% chance of having the “wrong” blood.

        Titer is 1:128 (I’ve had higher with previous pregnancies).

        No I did not know you could find out in a less invasive way, and I live in Italy so perhaps I can find this test here.

        Do you have a link?

        Thank you for your help!

      • You are positive for anti-kell antibodies and your husband is positive for the kell antigen. That is a pretty high titer so make sure you start weekly MCA scans at 16 or 17 weeks unless you find out before then that the baby is kell negative. I just published a blog post with all the forms and instructions so that you can send your blood to the Netherlands to find out whether baby is kell positive or negative. If you come find me on facebook (Bethany Weathersby) I can add you to the Iso Moms group with women who are going through the same thing. The women are so supportive and helpful.

  2. This has been a really good read for me and I will be passing this page on to all our family members that do not understand the anti-k situation as I think it is explained well and will help them a lot.
    We lost our beautiful son Hudson at 28 weeks on 29th Dec 2016 due to anti-k antibodies, we knew I had the antibodies from 10 weeks and placed on high risk pregnancy. I had blood tests done every 4 weeks to keep a track on the antibody levels, we had the blood tests done to work out my other half’s blood type and he is heterozygous so from a few blood tests my consultant ‘assumed’ that’s Hudson was the same as me and discharged me, 5 weeks after being discharged with no scans, blood tests for Hudson or anything having been done to keep an eye on us we had been informed that’s Hudson had died and that I would have to deliver him stillborn.
    We are trying to help research by allowing them to keep the tissue samples for research purposes as we feel that not enough has been done to raise awareness for anti-k.

    • Megan, I am so sorry that you lost your sweet baby Hudson. I was devastated to read your story. Losing a child is the worst pain imaginable. NO baby should ever die a preventable death. I am so sorry that this happened to you. I hope your doctor will be held accountable for what happened. They should have been doing weekly MCA scans to check Hudson for anemia. Come and find me on facebook so that I can add you to the Iso Moms group. Many women in the group have lost babies to these antibodies, and sadly, many of the losses could have been prevented. It is comforting to be in a group with other women who know how it feels (and it is helpful if you ever want to try again for another baby.)

      • Hi Bethany. Thank you for replying, I’m sorry it’s taken so long to reply but I didn’t see your reply. I will find you on Facebook as this is such a rare read so to speak to other mums who have had similar situations, I felt so isolated.
        We are planning on having a meeting and discussing everything with the consultant, to know if things were done properly things could have been different and to think I could have come home with my Hudson is heartbreaking.

      • When is your meeting? I would love to give you a list of questions to ask, if you’re open to it of course. I think I just saw your request on facebook so I’ll add you and talk more there!

  3. Dear Bethany, Thank you so much for this post!
    My husband and I are in the process of starting our fight to stay pregnant (we won’t do IVF right away, we’ll start with insemination first to see will it work) and my blood test came back yesterday saying I am kell antigene negative (phenotype kell) .
    After reading your post I understand what that means and what are the dangers of it and I will absolutely have my husband tested to see if he is positive or negative like me. I wil be hoping he is negative, but I know that the chances are slim…
    To be honest, I am very scared and just the thought that my body would see my baby as a virus is quite unbearable, but I will monitor everything closely and hope for the best. Your text will serve me a lot! I live in France so procedures are different but there is transfusion during the pregnancy and from what I see on forums, most babies get born well and healthy, as you said, it just has to be determined on time!
    Thank you very much again! I will join the group on facebook.

    Maya

    • Hi Maya, I hope your journey to your baby is smooth and boring! So, 91% of the population is kell antigen negative, like you. This means there is a 91% chance your husband is kell negative too! Even if he does happen to be kell positive (very unlikely) then your baby will still be safe since you don’t have anti-kell antibodies. It is actually very rare to develop these antibodies, even if your husband is kell positive and you are kell negative. I really don’t think kell will be a problem for you at all. Good luck!

  4. Hello!
    Your post had been the most informative and understandable article that I read so far about Kell-antibodies. 3 years ago when I got pregnant I was diagnosed with Kell-antibodies and was under constant supervision doing MCA scans every week until my daughter was born. My titer was low but I was bit scared anyway. Now my daughter is almost 3 years old.
    I’m pregnant again and when I was tested at 11 weeks the test was negative for Kell antibodies. I suppose they don’t disappear over time from the blood so why was the test negative for K? I got tested again last week at 19 weeks and it was positive for antibodies but didn’t detail exactly which ones. I suppose it’s the Kell again. I’m going back again tomorrow for another detailed blood test. Have you heard of Kell-antibodies disappearing and reappearing again? I’m so confused. I don’t live in the US and here in Europe and Asia they almost never heard of it and rarely test for such things 😦

    • Hi Sonya, so it isn’t that uncommon for an antibody to not show up in an antibody screen. Often, titers fluctuate, so if your titer was pretty low to begin with and then it went down, it can be too low to titer in an antibody screen. The antibodies are still there, they are just very weak and didn’t show up on the blood test. you will always have anti-kell antibodies, but that is awesome that they are so low. The general rule is that if your titer ever reached the critical level, EVER, in the current pregnancy or previous pregnancies, then you should be monitored as if your titers were critical, which means you should be having weekly MCA scans just to be safe. You should come join the Iso Moms group on facebook, there are a good number of women in the group who had the same thing happen to them. Send me a friend request (Bethany Weathersby) and I will add you!

  5. hi, i am 14 weeks pregnant and my doctor recently informed me that i am positive for little c antibodies. do you know how i can get my baby tested to see if she is + or – for little c? my understanding is that if she is negative like me, then we won’t have any major issues; is that correct?

    thanks so much,

    lizzy

    • Hey Lizzy,
      You are right, the baby can only be affected by your antibodies if she is positive. If she is negative like you, then it is a normal pregnancy and baby is completely safe from the antibodies. If you look at my blog post “Anti-Kell Antibodies: Is My Baby Kell Negative or Kell Positive?” you can get all the information about a maternal blood test you can have done to test your blood to find out whether baby is negative or positive for little c. Check out the links at the bottom of the page. The last one has instructions for little c. Print off the documents and bring them in to your doctor because he probably won’t know much about this blood test, but can definitely do it with the information i provided. It’s always helpful to have the actual documents in hand when discussing something “new” with your doctor. Oh, and you should send me a friend request on facebook (Bethany Weathersby) so I can add you to the Iso Moms group. There are a lot of women in the group with little c antibodies.

      • Hi Bethany,

        There are a few people on fb with your name. Which one is you? I am “Elizabeth Louise” and have a black and white photo of my three children as my profile picture.

        I will check out that information. THANK YOU SO MUCH!

        Lizzy

  6. Hi Bethany. I’m currently pregnant with my third child (fifth pregnancy). When I was pregnant with my first, I tested positive for Kell antibodies, likely from a previous blood transfusion. My husband tested negative, so it was my understanding that this was no longer a problem. My current OB is saying that it can still be an issue. If he’s negative, how can the antibodies affect baby?

    He’s sending me to an MFM, so I’ll ask lots of questions there, I’m just trying to better understand the possibilities in advance. I just friend requested you on Facebook. Thanks for sharing your story and information.

    • Hey Amanda, so it sounds like you know more than your OB does about anti-kell antibodies. He is wrong. If your husband tested negative for the kell antigen, then your baby is 100% safe from your antibodies. If the father is kell negative, then the baby will be kell negative (both you and your husband are kell negative so there is no possible way for your baby to inherit kell.) If the baby does not have the kell antigen in his blood, then there is nothing for your anti-kell antibodies to attack. You an ask your OB to show you the studies that he is getting his information from. Ask him, “If my baby is negative for the kell antigen, what will my anti-kell antibodies be attacking? If the baby has no kell antigens for my antibodies to attack, how can the antibodies harm the baby?” I just saw your friend request so I will add you to the Iso Moms group!

      • Thanks so much for that information. This all makes so much more sense. I think I’ll ask that he be retested, because it’s been 6 years and neither of us remember 100%, but I’m almost positive my previous OB said “he’s negative, so nothing to worry about”.

  7. Hi, thank you so much for this blog. You have so much great information here and you are so brave for sharing your story. I would have loved to find a blog like this 7 years ago when I first found out that I had anti-Kell (and I was 7 weeks pregnant with my 2nd child). My daughter (who is Kell +) and I had a massive fetomaternal hemorrhage right before her birth, and she was born very anemic (unrelated to Kell) at 34 weeks and had multiple health issues at birth and on. My son ended up being Kell negative but I was monitored with MCA scans because we didn’t know his status. He was born healthy but both kids have special needs and ongoing medical issues. Fast forward 7 years and I am now 12 weeks pregnant with my 3rd child. I just got referred to MFM. My husband is heterozygous for Kell antigen. Is there still an active Facebook group that I can join? Starting to get anxious as I head into my 2nd trimester. Glad to see there is more information out there now. Thank you ❤❤

      • I am little k cellano o positive would I have trouble getting blood if needed
        not having any children had 4(hey are all fine did not get the little k ) can you help me

      • Hmmm, that is a good question. I don’t think they would have to match you with little k cellano blood, but if you were given blood that contained antibodies that could be a problem. But don’t they screen donated blood for antibodies before giving it to someone? My baby Nora is kell positive but for all seven of her blood transfusions she was given kell negative blood that contained no antibodies and she did great.

  8. Hi,
    I’m so glad you have shared your story and I am sorry for what you have been through.. I found out after 2.5 yrs trying to conceive and failing that one of my issues is that I have anti Kell 1:1 so very low. This may have been due to the 6 blood transfusions after the emergency c-section of my beautiful son number 2. My husband had bloods done today to test for Kell so we find out in two days. I understand my chance for baby to be harmed is low with 1:1 but my other concern turns to needing blood transfusions myself as I read that they do not generally screen for Kell as it is too expensive. This is not my only issue with conceiving so my dilemma is do I give up on the dream of one more or accept the risks involved. I’m scared especially seeing as I nearly died giving birth to baby #2. I have been going through a range of emotions lately it’s anger that the doctors knew about kell positive and negative why not test on pregnancy with both partners find out early and don’t give young women the incorrect blood I would have paid extra to have the correct blood. Ok rant had thanks for reading, I have lots to think about.

    • I’m so sorry for all the stress and frustration. Many countries in Europe screen donated blood for kell so I don’t know why the U.S. doesn’t. Maybe cost? Anyway, you definitely should not let this stop you from trying for the baby you long for. Your baby will probably be fine with such a low titer, and honestly, I doubt your husband is kell positive so your antibodies probably couldn’t hurt the baby anyway. 91% of the population is kell negative so your husband only has a 9% chance of being kell positive. Baby is only in danger if he is kell positive and he can only be positive if Daddy is positive. If your husband is kell negative (91% chance) then your pregnancy won’t be high risk and baby will be perfectly safe from the antibodies, even if your titer was in the thousands. If you get pregnant you can discuss your antibodies with your doctor and they would need to prepare blood ahead of time to match your antibodies, just in case you need a transfusion.

      • Thank you for your reply….
        results are in and he is Positive for Kell, could explain the problems I had with son #2 perhaps he is + and son #1 – who knows. Also I’m 1:32 not 1:1 perhaps I was not listening correctly. I guess knowledge is key. I’m actually in Australia and I was just going off what I have been reading online about the whole screening thing. I might have jumped the gun not sure where I read it but I’m annoyed either way. I have been wondering is it wise to donate blood if you are Kell + or have Anti Kell…. something for doctor next time we visit! Again thank you for sharing your story I’d say it’s helping a lot of people!

      • Wow, that is a surprise that he’s positive! And you are right, your second son must have been kell positive and you were sensitized during birth. His blood type would not have caused any problems during your pregnancy and birth with him though because you didn’t have the antibodies yet. It also has no effect on TTC thankfully. Anyway, even with a positive husband and a titer of 32 you can definitely have a healthy baby so don’t feel discouraged. Baby will just need more monitoring and possibly some intervention. Or you could still have a kell negative baby and a normal pregnancy. Also, you and your husband should not donate blood (or your youngest son, but I doubt he is wanting to donate blood anytime soon)

      • Bethany,
        I came back on here to reread your site after trying to fall pregnant for so long and seeing a fertility specialist I am finally pregnant. My Ob/Gyn booked me in for an appointment at a bit over 6 weeks. So I guess the adventure begins. It’s interesting how little general practitioners know regarding Anti Kell. I am thinking I should print out your site for my GP. I will keep you posted, knowledge is key. Thank you for your knowledge even though it comes from heartache.

  9. Hi there-
    I am so thankful for your post and so sorry for your loss of Lucy. I am 31 weeks pregnant and today at my OB appt the doctor was reviewing bloodwork and noticed that I tested positive for anti-kell antibodies at 18 weeks, 1:2. They quickly drew blood to retest and called my husband in for bloodwork. He tested positive, but my test today came back showing no antibodies. They are referring me to a MFM, but that won’t be until next week. My dad is a family doc and immedietly I called him and he had no idea what this was– has never heard of it (and neither had my doc). My dad called the MFM and he did a good job explaining much of what you said in your post. My question now is, is my child at risk if my bloodwork came back with no antibodies? I am going back and forth feeling at peace and being worried sick and I don’t know how I will get through the weekend. I am worried that if this baby is anemic and I am at 31 weeks, could I lose it at anytime without the IUT? My dad is feeling at peace based on talking to the MFM, but recommended I go to the hospital and get an Ultrasound (or maybe the MCA– i haven’t had one yet) to put my mind at ease. What are your thoughts on this situation?

    • So sorry you are dealing with this. So, if it were me, I would get in for an MCA scan as soon as possible, just because you are already 31 weeks and they discovered the antibody so late in the pregnancy. Once you test positive for the antibody it does not go away, ever, but sometimes it can be too low to titer and won’t show up. That doesn’t mean it’s gone, just means your titer has fluctuated or there was some variation in the testing, lab tech, etc. Titers fluctuate all the time. Your baby is probably fine because that is SUCH a low titer, but it could have been higher earlier in the pregnancy and you wouldn’t know since they weren’t monitoring you for it, you know? I really do think your baby is safe, but just to be sure, you should have an MCA scan. It is a non-invasive ultrasound that doesn’t take long at all and it could save your baby’s life. There is no good argument NOT to have one so if your MFM is not on board keep pushing for it or find a new MFM.

  10. I just want to thank you for share your experience, your blog is the only personal information I found in the internet about kell!, about 2 years ago we discovered that my wife had the kell immunization , our little baby is health and beautiful, she had 3 transfusions before and 2 more after birth!
    We live in Italy, near Venice, we found very expert doctors at Bologna, they made an excellent job, they monitored the baby every 3 days, and they made a wonderful job with the transfusions.
    Its amazing that there is very few information about this. Thanks again for sharing.

    • Wow, I am so glad your doctors were so proactive and took such good care of your baby. What a great blessing. I wish all doctors treated these pregnancies the same way. I am so thankful your daughter is healthy and alive! Thank you for sharing your story with me 🙂

  11. Hello sorry for your loss i am asking can this be harmful if u only find out you have anti k when u r 31weeks my neice just found out and we r a little worried

    • Yes, it can be dangerous. She needs to get in right away to have an MCA scan to check the baby for anemia. That should be the first step. Once the scan is done and baby looks good they can do the other tests (testing Dad’s blood to see if he is positive for the kell antigen) Do you know what her titer is?

  12. I contracted the anti-kell antibody in 1986 from a blood transfusion. I had 2 sons , one in 1988 and another in 1991. We lost our daughter Molly in the 26th week of pregnancy. There was not a lot known back then about this antibody, so thank you for shedding some light. I also have pernious anemia which complicates things even more. I have read conflicting reports about if I should be worried about my son’s future children as they are both planning to do in the near future.? It looks like they should be tested for the antibody at the very least. Any info or words of wisdom would be greatly appreciated.

    • Hi Donna, I am so sorry that you lost your daughter Molly. It is the deepest heartache. Even if your sons are kell positive it is unlikely that their wives will develop antibodies. Just to be safe, their wives can be tested for anti-kell antibodies sometime in the second or third trimester (all women are tested for it in the first trimester) but thankfully it is so rare to develop these antibodies. There have also been so many advancements in the treatment options available that most women with antibodies have healthy, living babies. If your sons are kell positive they shouldn’t ever donate blood, by the way.

  13. I am 17 weeks pregnant and I a
    Have anti kell antibodies and my baby s father is kell positive, this is my second baby, it looks like when I delived my first son my blood and his blodd mixed and I created the antibodies, I am super concerned because after reading your blog I complete understand how it wokrs and what must be done, but my obstretician and my maternal fetal dciror have no idea how to treat it, I have been telling them in a very nice way what I beleive they should do and they are telling me there is no way they will scan me weekly before teh 20 week and or are checking my titer levels avery week. i am trying to find another doctor but I am having a hard time, they are asking me for referals from my doctor and my doctor i telling me they akready sent me with the one I am seeing and I do not trust her at all. I am doing online searched and trying to call perinatologyst but it looks like nobody knows whta I am talking about. I need help, I live in South Florida

    • Hey Lorena, I just replied to your email. I’m so sorry you have to deal with your doctors and their reckless choices. You are right, you should be having weekly MCA scans since your titer is critical. Come find me on facebook and I’ll add you to the Iso Moms group and hopefully someone can help you find more experienced MFMs in your area.

      • I changed my perinatologist and the new one is understanding me more and today they have drawn my blood to be sent to Netherlands to find out if the baby is positive or not. I also found out today that my titer was 1:16 in 2014 after delivering my first son, it was 1:2 March 2017 when I found out I was pregnant and today April 2017 is 1:1. I do not get it, why my titer will go down? I had an MCA scan done today and it is normal I am 19 weeks 5 days and this was my third one, all of them normal. The new doctor was very happy with the information I gave her regarding the noninvasive test in Netherlands and she told me she will start doing with patients from now on trying to avoid the invasive tests.
        Thank you for helping me and my baby and a lot of future babies!

      • That is awesome Lorena! I’m so glad you found a good perinatologist and baby looked good on the scan. Did you get your blood results back yet? I’m still waiting on mine

  14. Hi, I am new to this group and so thankful to have found it. I’m really sorry to read about your families who have experienced heartbreaking loss due to kell and anti-kell. In the last few weeks I have learned that I carry anti-kell from blood transfusions after an auto-accident many years back and my husband just tested positive for kell. We discovered all of this as we are trying to conceive by my reproductive medical office during a routine blood-typing. My RE now suggests that we move to IVF and has informed me that there is now testing that can be done pre-insemination on embryos to determine is they are kell positive/husbands with one copy of kell have passed it so that the baby and pregnancy will be kell-negative. We are going to pursue this option next cycle once our lab confirms they can make the PGD test. I am very surprised there is so little information out there on kell and anti-kell and wish this was more routinely screened in all regards as it has lead to so much pain and loss, and that all options were explained to anti-kell women who are hoping to conceive. I wish everyone the best. Thank you for sharing and I wish you luck.

    • Hi Jackie, that is definitely a good option if you can afford it or if you were going to possibly do IVF anyway. Like you said, they can test the embryos ahead of time and find out which ones are kell positive/kell negative. They can implant only the kell negative embryos and then you won’t have to worry about the antibodies at all during the pregnancy and baby will be safe! Good luck! Would love to hear an update when you have one!

    • The results came back a few months ago and baby is negative so he has no risk, I am 36 weeks pregnant and c section schedulle for September 14th.
      Thanks ypu for everything and I will pray for you baby as well!

  15. Bethany,

    I just found out I am kell positive. Would like to join the fb group and can’t seem to find you specifically on fb. Let me know

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s