Anti-Kell Antibodies

* If you are dealing with anti-Kell antibodies and are searching for information, don’t be scared 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 three anti-Kell pregnancies 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. My last baby, Callum, was born at 34 weeks 4 days and is now a healthy toddler. Over the past six 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, Callum and possibly Liam all are positive for the Kell antigen. About 9% of caucasians are Kell antigen positive. I don’t have the Kell antigen, 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 antigen positive blood) some of his blood leaked out and mixed with my blood. This is normal during childbirth, especially a vaginal delivery of a 10 lb baby! 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 injected with 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. The antibodies I produced were specifically designed to find and destroy red blood cells containing the Kell antigen. 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. There are also recent studies that show that intravenous drug abuse can possibly cause sensitization as well.

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 antigen 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 four kids have all been Kell antigen 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 and destroying her red blood cells. This can make the babies very anemic and eventually can cause fetal hydrops or even death if the fetal anemia is untreated. Thankfully, with the correct monitoring the anemia can be caught in time to treat before it becomes severe.

The way the anti-Kell antibodies are measured is something called a titer (pronounced “tight-er”.) The titer shows the amount of antibodies in the mother’s blood. When a mother’s titer reaches 1:4 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. Titers can be expressed as a ratio like this, 1:16 or just the number itself, 16. A titer of 1:16 and a titer of 16 mean the same thing. The critical titer for Kell is 4 and the critical titer for all of the other antibodies is 16. 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. It did go down to 512 with my last baby, Callum, and was 256 at the end of the pregnancy. Now that I’m not pregnant, my titer is 2,048, the highest it’s ever been. 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. I had the same titer with my daughter Lucy and with my daughter Nora. With Lucy I did not receive the right monitoring and treatment, so she was stillborn. With Nora I did receive the right monitoring and treatment from very experienced MFMs and she is now a healthy three year old like I mentioned before. My son, Callum, also received the correct monitoring and treatment and is perfectly healthy now.

So what does the monitoring and treatment look like? Babies should be monitored very closely and can be given an intrauterine blood transfusion if they become anemic. Regular ultrasounds or even in depth level 2 ultrasounds cannot detect fetal anemia, unless the anemia is so severe that it has started compromising baby’s organs or fetal hydrops has occurred. The goal is to discover and treat the anemia before it ever gets to that point. Doctors can detect and measure fetal anemia by doing an MCA doppler 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 should 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 14/15 weeks, although some women say they have lost babies as early as 13 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. My baby Nora had her first MCA scan at 15 weeks and weekly after that. She had five IUTs. My son Callum had his first MCA scan at 14 weeks and had 3 IUTs. If you have a critical titer, you should start MCA scans by 16-18 weeks and have them done weekly to check the baby for anemia. If you have a titer in the hundreds or thousands it is best to start MCA scans by 16 weeks.

When an IUT is performed, the doctor basically sticks a really long needle through the Mom’s belly into the uterus and 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. The blood placed in the baby’s cord relieves the anemia immediately. The blood placed in the baby’s abdomen is absorbed over the following days/weeks and can act as a reserve, slowly filling baby up as she becomes anemic over time. Some doctors prefer to put blood into the baby’s cord and belly to resolve the anemia immediately and give baby a future reserve of blood in order to get more time between IUTs. Some doctors prefer to only put blood into the cord and will need to perform the next IUT sooner. 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. Dr. Trevett also scanned my baby Callum 24 hours after every IUT. Usually, if there is a complication from the IUT it happens within the first 24 hours after the procedure. My little Lucy was left for seven days after her IUT before they would scan her to see how she handled the procedure. Make sure you only let experienced MFMs do an IUT procedure on you.

Some women have extremely aggressive antibodies, so the concern is that the baby will become anemic before she is big enough to have an IUT. Only very skilled and experienced MFMs can perform a successful IUT on a baby younger than 20 weeks. The smaller the baby, the more difficult and dangerous the procedure is. One way to protect the baby until she is big enough for an IUT is to give the woman plasmapheresis and IVIG treatments. With Nora and Callum I started plasmapheresis and IVIG around 10 weeks and the treatments saved their lives. These treatments are usually only given to women who have had a previous loss or a severely affected baby in a previous pregnancy, or women with extremely high titers.

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 and isn’t profitable for the pharmaceutical companies.

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 antigen 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 1:4 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
  • Feel free to email me or private message me on Facebook 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.

296 thoughts on “Anti-Kell Antibodies

  1. wow thanks for the useful information. I just recently was pregnant with my 6 baby and found out that I was positive for anti kell. never had this with my five previous pregnancies. so I was very in shock and didn’t really know what I was dealing with. I had an appointment on Monday to see the perinatalagists but lost the baby throught miscarriage on Wednesday before. so I never actually got to meet with the Peri and find out all the information and what was going on. I’ve never had a miscarriage until now and I guess I assume it was because my body was already attacking a baby. I am just so confused and lost for words but I really appreciate you posting this. It makes a lot of sense and now I can kind of understand what’s going on so I can go with it

    • Robin, I’m so sorry for your loss. If you don’t mind me asking, how far along were you when you lost your baby? If it was in the first trimester then it was most likely something else that caused the miscarriage. If it was later in the second trimester it was probably the kell. The antibodies don’t start affecting the baby until after the first trimester. If you had a first trimester loss then you probably have a good chance at another baby (not sure if that’s something you want.) Again, so sorry for your loss. Every baby is special and important, no matter how far along you were.

  2. I’m so sorry to hear about losing Lucy. to be that far along and go through all that had to been so hard 😦

  3. I am so sincerly sorry for your loss. I found out one week ago at 33 weeks that my baby is kell+. So far he is doing well but its a stark reminder of how precious life is!

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  5. I’m so incredibly sorry for the loss of your daughter! I have a three year old boy who is the product of a Kell sensitized pregnancy. because of the anemia he has cerebral palsy. He is my world 🙂 I also asked my doctor the same thing about getting a shot for kell pregnancies she said the same thing. It makes me sad to hear this happening more and more and still nothing is done about it! My thoughts and prayers are with you and your family! Big hugs to you!

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  7. I am K+ and husband is K-, one doc says 50/50 chance and another specialist doc says no chance since husband is K-. Who do I trust? Help!

    • So, you are kell positive and your husband is kell negative? If you are kell positive, then there is no risk for the baby. Your body won’t make antibodies to fight it’s own blood type. If you are kell negative and your husband is kell positive, then that’s a different story. Sorry you’re having to deal with all of this! It is very confusing.

      • Bless you – you are too kind to reply right away, thank you so much. Have a wonderful day! 🙂

  8. This was interesting page to find. I hope that my English is good enough that you understand, I´m writing from Finland. Our child died 2005, because the Kell. After that, two pregnancy were aborted because baby did have Kell. 2009 I was pregnant again and my wonderful doctor recommended that we should use immunoglobulin (I´m not sure what that is in English) but every month I did have that immunoglobuliin to right to blood vessel, It did help, so that my child didn´t get anemic so early. Doctor did put into the baby’s umbilical vein seven times blood. My lovely daughter did born c-section two month too early. But everything is ok. She was at hospital two month and then she came home. We have 50/50 chances to get healthy baby, and we did have him seven month ago. It was normally pregnancy. It would be very nice to hear more from everyone of you. I haven´t ever meet or have possible to talk someone who has this kell. Thank you for this page. If someone would like to share with me thoughts my email is tuulia.merikoski@gmail.com.

    • I’m so sorry you lost your children to kell. It’s so sad, but I’m glad your story ends well! Your story gives me a lot of hope. We call the immunoglobulin IVIG here, and I will be trying it with my next pregnancy. I’m so glad it helped save your daughter’s life. Thank you for sharing your story!

  9. I’m so sorry for your loss. How devastating. Your story brings me back to 2007/2008 as I, too have Kell antibodies. My son had three IUTs, delivered 3 weeks early, spent 15days in NICU ( for mostly non Kell related issues), and had one more transfusion when he was one month old. 5 years later, he us a happy, healthy boy! I can only pray that sometime soon someone will invest the money for the research for a shot/cure as simple as the one for rH. God bless!

  10. So sorry to hear of your loss. I, too have Anti-k (husband kell positive, first son positive, second son negative). I’ve been thinking about a 3rd child recently and the thought of going thru this fear again – and possibly not being so lucky- gives me great pause. Is there new data with the IVIG? That it may work? Have you heard anything about in vitro and Kell? Thanks! Nice that you have this, not much info out there!!

    • I think IVIG is “technically” still considered experimental, but I have talked to so many women who have lost babies and then did IVIG with their next baby and the baby lived. I’m thankful that I can try it with my next pregnancy. I’ve looked into the in vitro a lot and it is a great option if your husband is heterozygous and you can afford it. Sounds like your husband is heterozygous, so that’s good. If you choose IVF they will create embryos from you and your husband and then test them for kell. They can then implant the kell negative ones into you and you will know from the beginning that it should be a normal pregnancy. We were going to try that (see “Baby Makin Plans” and implant the kell positive embryos into a surrogate (without kell antibodies, of course) because we didn’t feel right about discarding healthy embryos just because they had the wrong blood type. Anyway, if you really think your family is missing somebody I say it’s definitely worth the risk and most women with kell antibodies have great outcomes. Good luck!

  11. I am so sorry for your loss – but thank you for this blog. I had a Kell positive baby 15 months ago and at the time couldn’t find any user-friendly info on the web, although the Drs looking after me were great, they could be a bit clinical in explanation and it was hard for friends and family to understand the seriousness of what was happening. Joe had 3 transfusions before he was born and although born 5 weeks early is now a healthy happy boy.

    I wish you lots of happiness x

  12. Thanks for posting this! Some time after having my first daughter I donated blood and got a little card in the mail from blood services saying I was anti-kell. I asked my doctor about it and he said not to worry and we would discuss it if I ever decided to have another baby. Well I got pregnant again and it was too late to discuss it. We were sent to the specialists and started doing the regular blood flow scans of her brain. Then the option came to send both mine and my husbands blood work to England where they have a test they can do at 18 weeks to see if the baby carries the K on their blood. Blood Services applied on our behalf and we were declined- and devastated. They pushed and pushed and we were finally approved at 24 weeks. Finally at 30 weeks we got word that baby was negative! We did a second round (as per procedure) and again it was negative. At 36 weeks we could finally relax. The reason I’m sharing our story is that most people don’t know about the test in England. On 75 people had done it before us and they had only been wrong on their diagnosis once. I think if more people with the anti-k know and can get the testing, it will give peace of mind to more parents, and help focus treatment if you know FOR SURE that it is present. We were lucky. Thanks again for posting this. I feel like I was living in a fog throughout most of the pregnancy and never fully understood it all. You have really helped clear up a lot of things for me. 🙂

    • Thank you for sharing! I knew a little bit about the maternal blood tests, but always wanted to know more. When I was pregnant with Lucy I actually asked my MFM if we could do it to find out Lucy’s blood type, but they said it wasn’t offered in America. If I ever get pregnant again, I will be much more pushy about trying it. I’m so glad you got a healthy, non-kell baby!

  13. I was treated throughout my pregnancy at OSU Medical center in Columbus Ohio. My blood was sent to England as well..right around 18 weeks. Tested positive and it was right ( my story posted earlier in thread). So blessed to have that ootion as we knew early on what we would most likely -and did- have to deal with.

  14. I’m so sorry for your loss, anti-kell is such a horrendous thing. I’ll be praying for your and your family.
    We had a kell sensitised pregnancy in 2011 which had a happy ending thankfully, after 4 IUTs and being induced at 35 weeks because they weren’t happy with my daughter being kept in any longer. She had a 3 day stay in the NICU, but was fine after that until she was 6 weeks old when she needed one further transfusion. We got away with it really. I just pray that one day someone spends some money on this as it is so devastating. I’m in England and I had to really fight to get anyone to take it seriously for a very long time – if I hadn’t done that, and hadn’t eventually been referred to our regional specialist foetal medicine centre, we wouldn’t have our daughter now.
    My thoughts and prayers are with you.

    • Thank you for your prayers. Anti-kell is horrendous and it makes us sad that it has been passed down to our boys and one day might affect their own wives and babies. Thank you for sharing your story. I am so glad your daughter is happy and healthy and with you today.

  15. Hi,

    I am 16 weeks pregnant with my second pregnancy and have found out that I am kell positive through blood tranfusion with my first birth. My husband is kell negative however my first titer level was 8000 which they dr has referred my to a specialist. The dr as stated that I am a high risk pregnancy. I am feeling overwhelmed as no one yet seems to know anything about how this will affect my baby and pregnancy. I would really appreciate if I could speak to some mums that have experienced this as I am really sad atm. Thanks

    • Hi Cheree,
      I am so sorry you are going through this. The one thing I know about titers is that they are unpredictable. Some women have high titers and a healthy baby, and some women have lower titers and a very sick baby. BUT if your husband is kell negative, then there is no way your baby can be affected, so you are in the clear! The dr probably just wants to be cautious and monitor just in case, but really, if your husband doesn’t have the kell antigen, there is no way your baby can have it. You should join our Facebook group for iso moms. I’ll talk to the admins and see how you can join!

      • Thanks so much for your prompt response. Well I’m glad to hear that the baby should be all clear. I haven’t been able to celebrate this pregnancy because the fear of the unknown. I currently live in Central Queensland, Australia and have to fly to Brisbane this Friday, 7th I believe for the MCA scan. I would love to join that facebook page and will see if I can find it. Once again thank you so much for replying xo

      • It is a private group so I have to invite you to be a part of it. You have to be my fb friend for me to invite you. I’ll try to find you on fb!

  16. I’m so sorry for your loss. I think you are doing a great thing by sharing your story with others. When I found out I had anti kell I felt so alone because nobody new what it was, even the nurses! I searched the web and found very little and what I did find was very clinical and hard to understand. God bless you and your family.

  17. I just found your blog as I was searching for anti-kell antibody and pregnancy. I’m 12 weeks and anti-Kell, and my husband is a hetero zygote for Kell. Our docs are suggesting an amniocentesis to determine whether our baby is Kell positive or not. Did you have this test done, or would you in the future?

    • Hey Jane,
      Do you know what your titer is? We were offered the amniocentesis but turned it down because there is a very small chance of miscarriage that goes with it. Also, some doctors think an amnio could possibly allow the antibodies to get to the baby easier, so it could be dangerous. Some doctors think it is relatively safe. We knew my titer was extremely high, so we didn’t want any added risks. They monitored me as if the baby was kell positive and started MCA scans early to be safe. A lot of ladies think it is worth the peace of mind to go ahead and have the amnio so they can know for sure if the baby is kell + or kell -. If we ever get pregnant again, we will still decline the amnio just to be safe. Some women have been able to send their blood overseas (to England I think) and they can pick up the baby’s blood type through your blood, which sounds very cool. Good luck! I will be praying for you and your baby. I’m so sorry you are having to deal with this.

      • We debated but decided we wanted to know for sure if we needed to be concerned about the Kell. I had the amnio and it went perfectly. We got the results in a week and the baby is Kell negative! We are thrilled. We also did a karyotype since we were doing the amnio and learned that everything is normal with this little guy (it’s a boy). Thanks for your site and your insight. All the best.

      • What great news! Congratulations! I am so happy for you- and a baby boy, too. Boys are so much fun 🙂 Now I hope you can relax and try to enjoy the rest of your pregnancy.

  18. I ended up getting the amnio to be 100% sure baby was ok and no future treatment would be needed. Goid luck, thinking about you.

    While I have you all. Question. Baby is negative bc my husband is (I have the proteins). I’m wondering if anyone knows if I’ll be able to breast fees or if that may transfer / expose the baby. Let me know if you can please. 29 weeks and starting to think about these things. 🙂

    • Hey Jane,
      Breastfeeding is fine. It can’t hurt the baby at all! Enjoy every moment with your baby, I missed breastfeeding Lucy more than anything else. Glad your baby is negative!

  19. Thanks for the quick response. Great to hear. I thought there was some blood transfer during the process, so that was my concern.
    Lucy was lucky to have you, you seem like a wonderful woman. Xo

  20. Everyone take hope! I’LL TAKE YOU BACK 25 YEARS — Here’s a first generation 100% Spaniard American born and raised marries an English-Russian American and happily gives birth to a perfect little pink baby girl no issues no problems.

    THEN six months later SURPRISE in February1988, I just lost 30 lbs and ooops pregnant again with a 6 month old and a full time job. I quickly realized that it was great being pregnant again so I got ready to put those 30 pounds back on and was just getting the courage to tell my boss I was going to be on maternity leave again soon — boy was I dreading that conversation.

    Anyway I decided to keep it quiet for a while and about 16 weeks into the pregnancy just as I was beginning to show, I get a very dramatic call from my gynecologist that my blood work had come back showing me as carrying the Kell antibody and he was very concerned and wanted me to go to Philadelphia to meet one of the VERY FEW specialists that even knew about the Kell antibodies in America. HE WAS DOOM AND GLOOM.

    I cried to days and pretty much we didn’t have a clue what this meant except my own doctor had terrified me. A good friend had just lost her full-term baby to a rare STREP B issue and we’re both named Anita so I was just feeling very vulnerable and afraid.

    FIRST, get the best fetal specialist you can find — or high risk specialist; I didn’t find my in Philadephia but he was a wonderful doctor in New Jersey where I live, and he knew a lot about KELL and told me to let him worry about the baby because he was going to delivery me a healthy baby boy but I had to take care of myself first and be positive!

    The plan was bi-weekly sonograms and, at the time they had just started testing called for shot an “amnio”, which were kind of risky then, and I was going to have a minimum of three, if all went well, and perhaps a lot more if I had problems. Well, I am afraid of needles, how brave we mother tigers can be to protect our young!

    Turns out, I saw that wonderful doctor every two weeks for the remainder of my pregnancy, we took it one sonogram and one amnio at a time, but my boy was Kell positive but the titers were good and all signs on each test good. To be safe, they decided to deliver him 10 days early and his only problem was being a little jaundice and had to stay one day extra in the hospital.

    The biggest problem we had was the shock and lack of information on this very rare issue, especially since they told us back in 1988 that only 1% of the world’s population would and 10% of Europeans in particular English population. Great I had to marry a blue blood. Seems nothing much has changed in all these years that it’s still a secret and not important enough to create a shot, which would be the permanent solution.

    But I still thank God for this wonderful Dr. Hollander from Livingston NJ who took my son’s life and my sanity into his hands and delivered me a perfect baby boy and kept me hopeful. Now, I wonder now that my daughter is getting married and hoping to have her own little babies very soon what her risks are. My son, is also kell positive and will have his own issues, but they said our is so weakened from generations of babies in our families that the Kell is probably a recessive gene I certainly. God’s blessings to all of you and your babies! Never stop praying and don’t lose hope!. I prayed every day and put my hands first into God’s hands and then my doctor’s!

  21. I wrote that long story above, but actually back in 1988 I was told not to breastfeed my son at all to be safe. But I’m sure they know more now then they did 25 years ago. p.s. Both kids are now college graduates, beautiful baby getting married in October, my son graduated from Fordham University and I am thankful for them!!!!! But I was too nervous to have a third, why risk fate!

  22. So sorry for your loss my love.
    I am also a kell mummy . I have 3 sons 4,2 and 11 months.
    My first son was born at 42 wk and was absolutely fine. They became aware of my antibodies during my 2 nd pregnancy. Ds2 was monitored closely and delivered at 38 wk. Fit and well. He was kell -.
    My 3 rd son had free fetal dna testing at 16 weeks which concluded he was positive. We got to 32 weeks before he needed his first IUT. He then had a 2nd at 34 wk before being delivered at 35 wk. He spent the first 5 days in intensive care before being transferred to special care for a further 3 weeks. He had to have another blood transfusion at 3 weeks old. His bloods were checked until 8 weeks old before we were given the all clear .
    It was the scariest time of our life. And are thankful every day that Harrison is fit and well. He celebrates his 1 st birthday next week. X

  23. I’m so sorry for your loss. Thanks for sharing your story, though, it gives a lot of useful information to those looking for it. I just found out that I have the anti-kell antibody. I am 10 weeks pregnant with my second child. We are going to see a high risk pregnancy doctor in two weeks. I really appreciate your story and the advice you shared. Thanks!

    • I know it is a scary “diagnosis” especially since it is so rare. The odds really are in your favor, though. And since this is your first sensitized pregnancy there is a very low chance that anything will happen to your baby. I am praying for you and your baby now. By the way, there is a really great support group on Facebook but its private. Let me know if you want to join!

  24. Hi, thank you for sharing your story. I’m 9 weeks pregnant and was just told by my doctor that I had anti kell antibodies. I got a blood transfusion after my first c-section and he said that’s where I got it from. He said he had to measure my levels in 4 weeks, but never mentioned having my husband tested, or doing any additional ultrasounds, he said it wasn’t anything dangerous, but after reading online, it looks very serious.

    Should I insist my husband to get tested? Doctor didn’t seem concerned at all but I’m scared.
    Thank you.

    • I am sorry you are having to deal with anti-kell antibodies and a confused doctor. Yes, it can be very serious and needs to be monitored. Feel free to take him a picture of my baby Lucy if he thinks otherwise. Odds are (91%) your husband is kell negative, which would leave you with a normal pregnancy and healthy baby. Your husband needs to be tested as soon as possible for the kell antigen. If he is positive, then he will have to have more tests to see if he is heterozygous or homozygous for kell and you will need to start having MCA scans at 18 weeks (unless your titer is under 1:8)

      If I were you, I would call my dr tomorrow and insist on having my husband tested. If your dr still thinks it isn’t a big deal, I can give you another dr.’s email address for him to get in touch with. His name is Dr. Ken Moise and he is an expert on isoimmunization (antibodies.) He is always very kind and open to answering anybody’s questions. If I ever get pregnant again my MFM (high risk dr) will be contacting dr Moise for some extra info. If your dr still doesn’t think it’s a big deal, you need to find another dr. Let me know if you want Dr. Moise’s email address! Good luck! And by the way, I just want to say that I’m proud of you for taking the initiative and researching this stuff instead of just taking your doctor’s word for it. Your baby is very lucky to have you as his/her Mommy.

    • Exactly what Beth said – look into a maternal fetal medicine doctor in your area and get your husband tested ASAP! The less stress the better on all of you. Blessings to you and your new addition!

  25. I’m really thankful for your faith! You can take comfort in knowing that God is bringing fruit out of your trial, look at all the women you are ministering to and encouraging!
    I am 28wks pregnant with my third child and just found out that I tested positive for the anti-kell antibodies. I’ve never tested positive for this before. This came as a bit of a shock because we have been lifting other concerns (last birth had shoulder dystocia and weighted 10.7lbs) for this pregnancy up to the Lord and this one was never on our radar. I have been transferred to a regular OB, up until now I’ve been seeing a group of certified Midwifes. Honestly this is the first blow, I’ve been praying about not being considered a high rick pregnancy because I love the midwifes and really don’t want to see a male OB. However God must have a different plan because where I live there are no all female OB offices. We are waiting to hear when we can be scheduled with the perinatologists.
    I’m really thankful for your blog! It has helped me feel a little bit informed and prepared to see the perinatologists.
    Do you think our first step should be to have my husband tested? Cause if I’m understanding right if he is anti-Kell negative, then there is no way our baby is positive and therefor there is no risk? Ya I’m still confused…

    • It is very confusing! I’m glad you’re researching it, though. Yes, you need to have your husband tested as soon as possible to see if he is kell positive. If you’ve never had a blood transfusion, there is a good possibility your husband is positive and your baby could be at risk. Do you know what your titer is? If it is over 1:8 your baby could be anemic already. I hope that doesn’t scare you, but I think you should get to the peri as soon as possible. Your baby is probably fine, but it’s good to check just in case. In fact, since you are 28 weeks already, (if it were me,) I wouldn’t even wait to get my husband’s blood work back. I would request an ultrasound and MCA scan right away just to make sure baby is not in need of a transfusion. Monitor your baby’s kicks carefully. If he/she is anemic the kicks might start to slow down.

      I used to think that male OBs were intimidating, but after having many amazing male drs I have realized most of them are wonderful. I bet you will love them too. Good luck! I will be praying for you and your baby!

      • Thanks for replying so quickly! We have our first appt set with the peri for this coming Monday. We won’t know anything specific until then. But I’m glad I’m equipped with some knowledge going into it. I will make sure we bring up my husband being tested, the ultrasound and MCA scan. Thanks for all your help!

      • We had our first appt with our peri this last week and found out my titer is only 1:2. Our Dr. doesn’t like to go by titers, she says they are not a reliable way to see if baby is sick. We did a ultrasound and MCA scan and the results came back great, showing a healthy baby. We are waiting on the results of my husbands blood work. If it shows he’s neg. then we will retest me to see if there was a mess up in my blood work and I don’t really have the antibodies because neither my hubby or I have ever been given blood/ had a transfusion. We will continue to get the ultrasound and MCA scan every other week though. Thanks again for your help!

  26. Just a quick note to let everyone know that I spoke to a physician at northwestern memorial in Chicago within maternal fetal medicine and breast feeding with mother having anti Kell is perfectly fine and will not transfer to baby. 🙂

    God bless everyone and these sweet babies!

  27. I have kell from a blood transfusion. My hubby is negative. Our fist two daughters, the kell numbers were low but our last daughters pregnancy, the number kept increasing. I remember them saying the kell count is high, but they never gave my baby any transfusions. She was born at 35 weeks because of my diabetes. I never knew the dangers we were in from kell. If we try again, I will be more diligent in getting proper care. By the way, our baby girl is a healthy 6 year old

    • Hey Delicia,
      Thankfully, there is no way your anti-kell antibodies can harm any of your babies since your husband is kell negative. The antibodies are only dangerous to babies that are kell positive, which is impossible if your husband is kell negative. So, no matter how high your titers are, your babies will remain unaffected. That’s great news!

  28. I’m terribly sorry you lost your Lucy. It breaks my hear to read your story but I found it to be so helpful. I am currently at 19 weeks and this same Diagnosis was told to us at 12 weeks along. It was truly a shock as we have made sure to keep healthy and ready for our 1st and 2nd baby. Now that this is happening, they told me to stay off the internet because all I will see is bad. As it has been so far, it has at least explained what is happening in normal terms. Thank you for that. I am being monitored every 2 weeks and was told anything from 21 weeks to 27, they will do a blood transfusion. Anything after, they will deliver. As each week goes by, I bless the man upstairs that he gave us one more week of hope. My titer went from 1:4 to 1:16 within a month. I just hope we can deliver a healthy baby. I wonder after the birth if this baby will have an problems. Only time will tell.

    • Hey Heather,
      I’m sorry you are having to deal with anti-kell antibodies. It is scary and frustrating. I disagree with your doctors about staying off the internet, though. Almost all of the women with anti-kell antibodies end up with a good ending to their story. The babies have a very high survival rate and are usually healthy. I think you have a lot of hope and your baby will probably be just fine 🙂

      Have you had an MCA scan yet? If you haven’t you probably need one as soon as possible. Your titer is not terribly high, but it is in the “critical” zone which means your baby could be affected. The best way to know if the baby is affected is an MCA scan. Also, the antibodies don’t cause health problems after the baby is born. If the baby became severely anemic in the womb or right after birth, there could be some health problems, but if you are monitored closely that is very unlikely. I think your baby has great chances of a healthy, happy life. I will be praying for you and your baby!

  29. Just happened to find this blog and I’m glad that I did. My story is similar. My first pregnancy was fairly normal for and IVF pregnancy. My second IVF attempt I was successful and pregnant with twins in 2010. At 14 weeks my physician noted that I had anti-kell and my titers were disturbingly high. This was the first I had heard of this and was rushed to MFM. There I was instructed of my options. I was a bit more complicated with fraternal twins. We next found out that my husband is hetero for the Kell+ giving us a 50/50 chance that each baby was effected. Next amnios on each baby at 16 weeks and a MCA scan where one of the gals (yes found out there were girls) is allready showing signs of hydrops.. and now wait on amnio results. One was positive and one was not as the MCA scan showed.. AGHHHHHHHHHH I’m happy and Sad what a whirl of emotions. next we have to decide is putting the healthy baby in danger at every transfusion is an option. ..we were sent for MCA scans at 17 weeks for our first potential transfusion and were told that the effected baby was no longer viable. we went on to deliver at 38 weeks and had a day of celebration and grieving at the same time. I have resolved that I am done having children as I could not handle this roller coaster again.

    On a selfish note do any of you happen to know if there is any effect the anti-kell autoimmunity will have on us?? in a non-pregnant rest of our life sort of way??

    I am sorry for all of your losses and applaud all of your strength.
    Great Health

    • Hi Sarah,
      Thank you so much for sharing your story. I am so sorry that you lost your sweet baby. That must have been such a roller coaster to mourn one baby and yet celebrate the other. I am thankful that at least one of your babies was kell negative. Your antibodies do sound extremely strong, like mine. I’m so sorry.

      The anti-kell antibodies do not affect the mother at all, so you don’t have to worry about that. I think the only risk might be if you had to have a blood transfusion and they accidentally gave you kell positive blood, which is pretty unlikely. Also, your husband should not ever donate blood because if someone else received his blood, they could then create anti-kell antibodies and put their own babies at risk.

    • First congrats on your baby girl whom you get to enjoy & condolences to the one you grieve. God is taking very good care of her i’m sure.
      The thing that confuses me about the tests they perform when they find out you are pregnant & have Kell antibodies is the Amnio, the amnio can cause a miscarriage regardless of Kell or not, but an amnio is a cause for the mothers & child blood to cross & then become a danger to the baby. I’m sure the doctors are smarter then I am, I just feel the father should be tested first before the baby is put at risk. When they found out I had Kell antibodies, they tested my mother, & siblings as a blood match for me, never even asked about my husband. Then told me that they had no compatible blood for me if I needed it.
      Thankfully I delivered a healthy 9 lb 2 oz baby girl… no one ever tested as to whether she was K+ or K- during my pregnancy or after.
      I don’t if it has to due with what Kell antibody type you are.
      KEL1 or K1 from what I can make sense of through googling are the main causes of hemolytic disease.

  30. hello everybody my name is krystal and I’m 9 weeks pregnant I had a doctors appointment today and he says that there’s nothing I can do that I have to wait im 20 weeks to see on a specialist I am really confused and I don’t know what to do:'( I don’t understand why I have to wait till im 20 weeks pregnant to see a specialist:'( please help

    • Hi Krystal,
      Do you have anti-kell antibodies? If you do, then you should be referred to a specialist before 20 weeks for sure! You have more power than you think…you can ask your dr to refer you earlier than 20 weeks or you can find a new dr who will. Good luck!

  31. I have 1 child. There were no complications during her pregnancy delivery or thereafter… But now within the 13 th week of my 6th pregnancy and after losing 4 before is this anti-k factor being spoke of. I’ve been repetitively tested for RH factors etc etc and after 2 very late term miscarrys and no explanations for why i was really beginning to lose hope for ever having another child as always wanted. I see a specialist Monday and am very worried to what i may hear back but i am so thankful to finally be getting some sort of answers to why this has kept happening… I must say the past few years of so many unanswered questions and lose with no reason had been so hard… Though of course i want good news just the thought of knowing anything gives me hope… I pray for any other women/families who have or are currently experiencing this. I know it has been a complet hell on me and my family…

  32. I am also Kpa- with antibodies as well as Coa – with antibodies, I didn’t know it could cause a problem with the baby my son & 2 daughters were all full term babies ,9lbs / 9.2lbs / 7.9lbs, the only thing the hospital & my doctors were worried about was have a blood match in case I needed blood. I do know they are becoming more aware of Kell and are trying to properly test blood for compatibility so the Kell antibody isn’t formed.

  33. Exactly my story. Every word is what happened to me in 1997. My son was still born at 24 weeks. We could not save him. We named him Thomas and buried him. He would be 17 now. I never told anyone what happened to him. Thank you for your detailed story. Bec

  34. Dear All, thank you for sharing your stories. I’m 13 weeks pregnant with my first baby and found out that I have anti-k. The doctor has done blood tests on my partner but it seems likely that he would be K positive, meaning are baby would also be the same. I have a further scan at 16 weeks. I’ve been searching the internet for information about K antigens and want it means during pregnancy but there is little information out there. Any advice would be welcomed as I’m feeling lost and anxious. I live in England. Wendy x

    • Hi Wendy, I’m so sorry you are having to deal with this stress. It is frustrating that there is so little information available about this. Are you on Facebook? There is a group on Facebook full of women who are dealing with the same thing. A lot of them know more about it than I do. It is a private group so if you find me (Bethany Weathersby) on Facebook I can get you into the group. They are so helpful and knowledgeable and can answer your questions.

      • Hi! I’m so glad to find this site! My name is Denise and I posted my situation but I haven’t gotten a response yet😔. Is there a special place I need to look?

      • Hey Denise, Im working on a reply right now. My two little boys keep me very busy so it usually takes me at least a day or two to respond to all the comments 🙂

      • Hello Bethany Weathersby I sent you a friend request on Facebook I’m 20 weeks pregnant with my first baby and I have anti-K. can you please get me into that group : )

  35. Bethany, I’m so sorry for the loss of your precious baby. Thank you for sharing your story. It’s helped more than you know.

    I had a blood transfusion after my son was born last year. I had surgery 3 weeks after the transfusion and the antibodies did not show on the type and screen. I’m now 17 weeks with #2. At 7 weeks my anti-kell titre was 1:8. I read your post and comments and had my husband tested. They just ran an antibody screen which did not seem right so i argued until they did a test for the antigen. He came back negative. My ob said that’s all we need to know and everything is fine.

    However, i see a hematologist for a blood disorder and he said rarely the antibodies can still cause problems and i should still have titres checked. I’m a little concerned that this pregnancy is a little off in some way being that the antibodies did not show up until i was pregnant.

    I was wondering your thoughts on this? Right now I’m just praying that everything is ok and that if it’s not, He will bring things to light. I’m in a situation where i myself need transfusions during pregnancy so i know they’ll type and screen again in about a month and I’ll know if my titres are rising. If that’s the case do you think i should insist on mca?

    Thank you very much for sharing your knowledge. I am praying for you!

    • Im so sorry it has taken me this long, but somehow I missed your comment and just now saw it! How is your pregnancy going so far? I think if your husband was kell negative then you don’t have to worry about the antibodies hurting your baby. BUT if you feel uneasy or concerned there is no harm in asking your drs to monitor your titer or even do an MCA scan if you want. This is YOUR baby and the drs work for YOU. You can ask for the treatment that you feel is appropriate for you. Don’t feel bad about it. Talk to your drs and say that you are worried and more monitoring would make you feel better about everything. But I have never heard of a baby being affected by the antibodies if the father was kell negative. I will pray for a safe pregnancy and a healthy baby! Keep me updated!

      • Bethany, thank you for replying! I’m sorry it’s now taken me time to get back to you!

        I just had my titres checked today and they are now 1:64. Last time they checked me 2months ago they were still 1:8. I’m having a lot of problems with concerns about preeclampsia so I’m seen every week for that, but I’m just so uneasy as to why the increase if there is nothing to attack? I will be asking my dr, but maybe you know if it’s normal for titres to rise with negative father???

        Thank you for your prayers and help!

      • I have heard that titers are very unpredictable and are not a good indication of how the antibodies are acting. If you feel uneasy about it, you can ask your dr to do an MCA scan just in case to check the baby for anemia, but if your husband really is kell negative, there is no risk to the baby.

  36. Glad I found this site! I am now 12 weeks pregnant with fraternal twins and have a 3 year old son. I did not know I had the Kell antibody until this pregnancy. I will have another titer drawn at my 14 week appointment and see the MFS around 18-20 weeks. I am hoping they will check my husbands blood at that time. Any info I have found has all been associated with singleton births- no multiples that I have found.

    • Hey Megan, congrats on your twins! I have known about several women who had healthy twins even with anti-kell antibodies. You are not alone! There is an awesome group on Facebook full of helpful women who have been through the same thing and can answer all of your questions. Find me on Facebook (Bethany Weathersby) and I can get you into the private group. I think if your titer is over 1:8 when they check it at 14 weeks, you should see your MFS sooner than 18-20 weeks. Good luck! I’m praying for you and your baby

  37. I have had three surgeries in under two years because of massive cyst on my ovaries, resulting in no tubes, no right ovary And only 10% of my left ovary. So you can imagine it was to my surprise that I still function and ovulate and get my period. My husband and I recently started IVF treatments. My blood work came back positive for kell. I had a blood transfusion back in February after one of my surgeries. Now we are torn. We don’t know if we should stop treatment or try to conceive and take the rocky road. Will the baby end up
    Healthy? Will it survive? I have a beautiful baby boy that I was lucky to have 5 years ago. We just were not ready to say just one. Help!!

    • Hi Denise, I am so glad that you have a chance at a baby through IVF! I don’t think you should stop treatment! Since you got the antibodies through a blood transfusion there is a really good possibility that your baby won’t even be affected by the antibodies at all. Your husband has to be kell positive for your baby to be affected by the antibodies. He has about a 91% chance of being kell negative if he is caucasian. Has he been tested for the kell antigen? If not, he should be. I’m betting he’s kell negative and you can have a normal pregnancy. If he is kell positive, you still have a very good chance at a healthy baby (probably over 80% chance!) Do you know what your titer is? The lower the better. I think you should definitely go for it! One of my greatest joys on earth is watching my children play with each other and love each other. Your son will always be thankful that you gave this baby a chance. Good luck!

      • I lost a baby boy in 2003 from kell at 20 weeks. My experience was my husband is a kell carrier and I got the antibodies from my daughter in 2001. Kell kills. To conceive the drs did not recommend that I have another naturally as the next pregnancy would be worse. The son I lost was at 256 titer. We did IVF with PGD testing to test the embryos. I was able to have a healthy kell free baby in 2005. Then, in 2009 I got pregnant not planned. My levels were in the 3,000. After doing the cvs test, it was declared my son would be fine and didn’t have kell. Yale, handled my IVF with PGD testing and my high risk testing for my 4th pregnancy. The were amazing and highly recommended.

    • Hi! Well after a long visit with a specialist today talking about the risks I have to go through… Blood work came back my husband is negative!. Wow what a relief! So this is good right? Normal pregnancy no chance of needing blood transfusions for the baby??

      • That is great news! Congratulations! Baby is safe from your antibodies, no need for transfusions or any of that. Now go and enjoy your pregnancy 🙂 and savor all of it for me

  38. Hello… I’m happy I found this page… I am so sorry for your loss. I am a gestational surrogate and found out before embryo transfer that I have the anti Kell antibodies. the doctor thinks I got this with one of my last surrogacies or with a blood transfusion I received. The parents I am carrying for still wanted to use me as their surrogate as I carried their first child. Because of the antibody I carry the egg donor selection was hard. After 4 donors that didn’t “match” with me we finally found a great donor. The Father is also a “match” to me. We were able to do IVF and I am now 33 weeks pregnant with surro baby girl. Now my question is… because everything was tested before hands am I out of the woods? Could this still affect baby through placenta? I went for my glucos test and my doc called me stating my anti kell was 1:128. I am not sure what this means but she seems to think I should see a specialist? I’m so confused. I am trying to research but there is not much out there.. especially refering to surrogacy and donor eggs/sperm.

    • HI, so have the bio parents of the baby both been tested for kell? If both of them are kell negative, then there is no way your anti-kell antibodies can affect the baby at all. Just make sure they are both kell negative.

  39. i am very sorry for your loss, 😦 thank you for all this information…. i have 1 question … i have always been blood type 0….. im currently 7 weeks pregnant and my Dr has told me im now K-k+…what does this mean ? thank you

  40. Thank you so much. The dr that runs the blood bank at the hospital is double checking that the test for my husband was run correctly but they do think it should be fine. We’re waiting to find out more but will probably go for a visit with the perinatologist just to put myself at ease.
    I really appreciate you replying. I feel very selfish asking for your help with all you’re going through right now. Please know how much of a blessing you are to all of us you’ve helped as well as how grateful I am for you.
    Praying for you right now and praying you will get your rainbow baby soon.

  41. Thank you for sharing your story. There is so little information out there, and your story helped me to understand the risks, statistics, and what we might be facing. I share my story only to help any other worried moms who might stumble onto your site as I did.

    Earlier this week, my 28 week blood work came back positive for K antibodies. This hadn’t shown up in any of my previous pregnancies, but my doctor was very proactive. He ordered blood work for my husband, another blood test for me, and a Doppler for the baby. My husband’s blood work was slow to come back, but mine did show no mistake about being positive for K antibodies. After my Doppler this morning, my doctor call to let me know that my husband is K-negative. We’re in the clear! My doctor suspects that my K antibodies came from a blood transfusion I received during a second trimester miscarriage before my last full-term pregnancy. He still can’t explain why it didn’t show up sooner, but reassured me that this baby is safe.

    Thank you again for your story. I’ll say a prayer for you and for other mothers who face the same challenges. Maybe someday the medical community will catch up with this problem despite its rarity.

  42. Your story has been extremley powerful! I two have kell neg blood and yesterday my husband and i said goodbye to our son who we were going to name carter. I was 18 weeks and my antibodies had already started attacking his blood and during ultra sound no heart beat was detected. My husband and i have been trying to wrapped our heads around this and what we can do to bring more awareness in the US. One day. In the meantime we will,cherish our healthy girl and boy and,continue to love our baby boy even though he is,no longer with us.

    • Oh this just broke my heart.I am SO sorry that you lost your little Carter. It is such a shock and such a terrible loss. I will be praying for your family, especially over the holidays ❤

  43. Pingback: SHOCKED | Losing Lucy and Finding Hope

  44. Pingback: Why We Feel SO Lucky to Have Four

  45. Hi all, wow, these stories are, although sad awesome to read. I am RH-, my first child born 29yrs ago is RH+. 5yrs later we decided we would try for 2nd child and miscarried, then soon became pregnant with a little boy, it was at 30 wks the doctor discovered something really wasn’t right so sent me for a scan, during this scan it was discovered the baby was severly hydropic, we were to deliver the baby the following day, 24th Dec 92, unfortunately during delivery he has a heart attack and only survived 7wks, they then advised me I was also kell-, we never heard of this before and also wondered why they had a cure for RH but not Khell, the doctors just said to us this is a very rare case and the best thing we could do was to try for another child. Hence we did and after 5 transfusion directly into babies tummy, she was born 6wks early at 3lb, May 94. Then when she was born she was critically ill and very jaundiced, after 5wks old she desperately needed an exchange transfusion. So after another 5yrs we decided to try again … surely the Doctors/Specialists know a little more by now, but alas this was not to be, our baby boy had 3 transfusions and after the 3rd at 28wks, sadly passed. And as stubborn as I am I was determined this blood issue would not get the better of me … and in march 2000 after 5 transfusions and 6wks early delivered a healthy 6lb baby girl! It truly was an emotional roller coaster and I know absolutely no one that has this issue, but I am very grateful that both my girls are rhesus & khell positive so will never have to go through this problem.
    I wish everyone who is dealing with this terrible disorder all the best, it is very hard when there is no support around.

    • Wow, you are one determined mama! I admire you so much. I’m also so sorry that you lost your baby boys. I can’t believe you had to deal with RH and Kell! Your girls are such miracles and I’m glad they won’t have to deal with these complications when they have their own babies. Thanks for sharing your story

  46. Oh my, you are a warrior! I admire you so much and so sorry for the struggles you’ve had. Thank you for sharing. And yes, very glad this group exists. Hugs

  47. Thank you so much for posting this and for keeping up with it all of this time later! I am 10.5 weeks and found out at our u/s on Friday that I have the antibody K and that my level is 128 (from my blood draw at 8 weeks). I was referred out and will meet with MFM on the 26th of this month at which point I should be almost 13weeks along. There is not a lot of information out there and I was really worried to not be seen until the 26th until I stumbled across your blog. You have made this very stressful time a bit better just with all of the comments from others and of course your own story. Thank you so much! ~Shannon

    • Congrats! I’m sorry you have to deal with anti-kell…I hate it. Sounds like you’re doing all the right things though. If you’re on facebook you should join our “ISO moms” group. It has been the single most helpful thing for me this pregnancy and I know it’s one reason my Nora is getting such good care and doing so well. It’s full of kind women who are also dealing with these antibodies and they have so much information to share. It’s a private group so you have to be my facebook friend for me to invite you to the group. My name is Bethany Weathersby so come find me on FB if you want

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