* 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. For more resources check out The Allo Hope Foundation.
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 four Kell sensitized 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 antibodies that tried to kill her in the womb. After Nora we had Callum, who was born at 34 weeks 4 days and is now a healthy, super smart preschooler. Our last baby, August, was born at 37 weeks 1 day and is a healthy one year old now. Over the past nine years I have done a lot of research and asked a lot of questions, and I now have a much better understanding of this disorder than when I was first diagnosed. 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, August 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. With each pregnancy we were hopeful that our baby would have my blood type, but we always got the wrong 50% because our last five 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 become anemic and eventually can cause fetal hydrops or even death if the fetal anemia is untreated. Thankfully, with the correct monitoring, fetal 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 4 it becomes critical for the baby. This just means that the antibodies can affect the baby at that level. My titer was 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. Before I got pregnant with August we tested my titer and it was 2,048, the highest it had 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 little girl. My sons, Callum and August, also received the correct monitoring and treatment and they are 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 started. 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 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 5 IUTs. My son Callum had his first MCA scan at 14 weeks and had 3 IUTs. Baby August had his first MCA scan at 14 weeks and needed 7 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 (called an IPT.) 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 babies 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 perform your IUT.
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 or IVIG alone. With Nora, Callum and August 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 are many different types of red cell antibodies, and the most common type is anti-D antibodies (Rh disease.) Because it’s so common they developed a preventative shot called RhoGAM that can be given to a pregnant woman before she develops antibodies 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 preventative 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: firstname.lastname@example.org 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.
Does anyone know the ‘genetics’ of this as far as our Kell affected babies go? My husband is Kell+ . My son is Kell+. I assume my first born is as well and I developed the antibodies during childbirth with her (never had a blood transfusion) or I guess it could have been during a D&C for a lost pregnancy at around 10 weeks. My son had 3 IUT’s and he had another transfusion at 1 month. He is now almost 7 and is just fine 🙂 My question is how will this affect his future children and his partner/wifes pregnancies if she isn’t Kell+? Will the cycle continue? Or, is it just as rare to form antibodies as it is to actually BE Kell positive?
That is a good question and I have worried about it many times too since I know at least one of my boys is kell positive. The odds are, our sons’ wives/partners will not be kell positive like them so there is a possibility of the cycle continuing. That’s why I REALLY wish they would develop a preventative shot like rhogam (for rh incompatibility) for anti-kell but I was told it’s so rare that they don’t want to spend the money on it. I’m hoping by the time our sons are older there will be some kind of shot to prevent their wives from even developing the antibodies. I was told by one doctor that most women who are exposed to kell blood like we were DON’T have an immune response and don’t develop antibodies. And if they DO, it is rarely as intense as my reaction (very high titer) Most women have a milder response and lower antibody titer and their babies aren’t severely affected (usually.) I am thankful that Nora will never have to worry about this problem since she is kell positive and won’t ever develop antibodies against her own blood type. Of course she could pass it down to her sons though 😦
I want to tell you thank you for sharing your story. I learned last year that I now have this very same thing when I found out I was pregnant with my son. I carried him up until 6 months and then delivered him (still birth). The doctors believe this is coming from a blood transfusion I received in 2002 after I was stabbed and left for dead. What puzzled me is that, up until last year no doctor ever mentioned this to me. I just wanted to thank you for sharing your story and for being courageous. My prayers are with you and your family. Seems I should become an advocate about this the way I am an advocate for domestic violence.
Wow, I am so sorry that you lost your son and that you were attacked like that, I can’t even imagine. You are so brave. If you did get the antibodies after a blood transfusion there is a good chance your future babies could possibly be unaffected since it depends on the father’s blood type. Even your son that you lost might not have been affected by the antibodies. Did his father ever have his blood tested? Did he come back positive for the kell antigen?
Question. I’m a male this is Kell positive. My X had 6 still burths.
How can I be tested to have a child with a different woman?
Hey Scott, I am so sorry that you lost six babies! That absolutely breaks my heart. It is very unlikely that you will lose a baby with your new partner. So, in order for your new partner to lose a baby to the antibodies she would have to be kell negative to start with and she would have to have anti-kell antibodies (very rare.) Then, she would have to have an incredibly aggressive case and even if that happened (as in my case) we now know there is treatment to save your baby. There isn’t any testing that you need to do since you know you have the kell antigen already. Your partner can be tested for anti-kell antibodies but the only way she could have those is if she’s had a blood transfusion in the past or has previously given birth to a kell positive baby. If she does get pregnant, she will be tested for the antibodies in the normal first trimester blood work. Odds are she will have no antibodies and it will be a normal pregnancy. If you decide to have a second baby she needs to be tested again in the first trimester for antibodies. If she has been sensitized from the first birth, she can still have a healthy baby with the right treatment.
Thank you for writing this blog! I’m so sorry to hear about your little Lucy and it brings me to ask you some questions of my own.
I have just found out that I am Kell positive Kk (just the one gene passed on), my son is Kell negative. I am 47 and have NO intention of having any more babies!! My mother though is in her 70s now and she has never found answers to her multiple miscarriages – only me and my sister were born from nine pregnancies, the first miscarriage was at six weeks, the next one was me – 42 weeks – (no problem), then she had a still born baby boy at 37 weeks, then came my sister, born at 37 weeks, (no problem) she lost another five babies after this over the next few years, mostly in late first trimester/early 2nd. What would be the most likely scenario here, assuming the Kell factor came into play? Would it have been my mother who was likely Kel positive or my father? It just sounds like the answer to so many questions for so many years and I think she deserves those answers…. I think it will put her mind at rest in knowing what possibly caused so many tragic losses.
Also, does a KEL positive mother have any issues or is it only when the father is positive?
My Dad is also in his 70s and he has cancer. He has already received a transfusion about 10 years ago after an operation in which he lost a lot of blood… if it is he who is Kel positive and he needed another transfusion and they didn’t realise that he has this, would this likely cause hemolytic anaemia? I’d like to know for my own sake too if I ever needed multiple transfusions. I know you are not a doctor, and that’s ok, but your understanding of this is very good and I’m trying to grasp this.
You have a lot of good questions and I’m so sorry for your mother’s losses. So, there’s no danger in being kell positive for an adult. It’s just a blood type. It doesn’t cause any health problems at all. If the mother is kell positive, it’s not dangerous at all to the baby since the mom can’t possibly produce antibodies against her own blood type. It’s also completely safe even if the mother is kell positive and the baby is kell negative. It is only dangerous when the mother is kell negative and the baby is kell positive. Because you are kell positive (recessive) that means one of your parents is kell positive and one of them is kell negative. If your mom is the kell negative one, then that could possibly be why she lost so many babies. If that were true my guess would be that the first loss was just a “normal” first trimester miscarriage and your mom didn’t have the antibodies yet. When she gave birth to you she became sensitized (because you are kell positive) and she developed the antibodies. The next baby was also kell positive and was stillborn because of the antibodies. Your sister who came next would have to be kell negative and that’s why she survived and it was a normal pregnancy. The babies after her could have been a combination of normal first trimester miscarriages and losses from the antibodies. Usually the very earliest a baby can be lost from anti-kell antibodies is 15 or 16 weeks, so it couldn’t possibly cause a first trimester miscarriage. Your mom could also have had something else going on along with the antibodies (blood clotting disorder, endometriosis, genetic abnormalities, etc.) that caused the earlier miscarriages. That must have been so frustrating and sad for her. About your dad, I think it would be very unlikely for him to receive blood with antibodies in it. If he did it could cause anemia. I’m not sure if they screen donated blood or not for antibodies. He could have a simple blood test to find out if he is kell positive and could ask his doctor about the risks associated with a blood transfusion. If you’ve already been tested and know you’re positive, it should be in your medical records so when they match the blood for a possible transfusion they will see that you are kell positive. Definitely ask your doctor about it if you’re worried, though.
Thank you so much for your well thought out response to my questions. I’ve been thinking of this ever since I posted and I came to the exact same conclusions as you. It’s actually given me a peace of mind and I am sure it will when I explain this to my mother. You’re right, we do have a blood clotting problem in the family – both my mother and I, so that I am sure contributed as well to her many losses. Makes me very grateful that I was given the gift of life, and exceptionally grateful for my sister. Thank you again for taking the time to explain this Kell blood type – you’ve been through so much yourself and I really appreciate that you have taken your experience to help educate others. xx
I wrote this almost a year ago and there is a possibility now that my mother (I didn’t think of this scenario a year ago!) will need a blood transfusion (or more than one)…. we assume my father is Kell positive (based on my mother’s miscarriages I wrote of above) but obviously there is also a small chance it’s my mother who is Kell positive. If my mother is Kell negative but has been sensitized by her first Kell baby (probably me), does that mean she would need a Kell negative or Kell positive blood match? I hope I’m making sense! Once again I understand you aren’t a doctor!
So, if your mom does have anti-kell antibodies it is very important to tell her doctors that before she receives a blood transfusion. They need to screen the donor blood and make sure it is kell negative before the transfusion. If she is actually kell positive it’s ok to give her kell negative blood, it’s just the antibodies that are dangerous…does that make sense? I guess there’s a small chance they might give her donor blood with anti-kell antibodies in it? Anyway just tell her dr ahead of time so they can get the right blood for her
So grateful for your strength and willingness to share, especially since there is so little written about Kell pregnancy experiences. I am fortunate enough to have 3 healthy, amazing children. My husband and I always wanted a very big family though. After child #3 (likely the first kell positive) my routine prenatal testing revealed a high anti-kell antibody titer (my husband is Kk). Despite lots of reassurance that the pregnancy should go smoothly since it was my first kell sensitized pregnancy, I had a devastating second trimester loss. I then had another second trimester loss a year later. Anti-kell antibody titers very high….Throw in two more unexplained first trimester losses, and I realize that emotionally, I am done. I too have explored plasmapheresis, IVIG, intrauterine transfusions, etc. but I have trouble wrapping my head around that being the stressful reality of any further kell positive pregnancies. I admire your strength and sensitive blogging and am grateful for your positive attitude and perseverance. I wish you all great things and can’t wait for you to share your miracle on this blog. With deep admiration, Heather
Thank you for your encouraging words ❤ I am so sorry for all of your losses! I SO wish that we had a preventative shot like rhogam but for anti-kell mamas like both of us.
Oh god. I I’m a nervous reck. I just found out that I have this kell antigen and the want to test my boyfriend for kell. She said that I could have devolved this antibody from a previous blood transfusion do to a D&C a few years ago I was 5 months pregnant and the babies heart stop beating and I had the D&C and they had to do a blood transfusion they couldn’t stop the bleeding.but this also could be why the baby died so far along . Being two months pregnant now they just now are seeing that I have this antibody from kell. So when they text my boyfriend if he has it the baby is in danger but if he doesn’t the baby will be fine is what my obgyn is saying. I pray to God he doesn’t have it. I’m a nervous reck but I thank you for writing this page it gave me way more understanding about this condition
Don’t freak out yet! I know it’s a shock to get news of a possible complication but maybe you won’t have any complications at all. Your boyfriend only has a 9% chance of being kell positive (even lower if he’s African American.) You probably got the antibodies from a blood transfusion and hopefully your boyfriend is negative. If that’s true, then baby isn’t in any danger at all. He definitely needs to be tested for the kell antigen though. Good luck! I’ll be praying for you and your baby.
placenta analysis report in March. You can read about it here.
The link doesn’t take us to a placenta report. I was curious to read it because we just found out my DIL is anti Kell.
Never heard of it before…..
Congrats on you new baby!
Rainbow baby = God’s promise?…yes?
Thank you and congrats on your grandbaby on the way. Has your daughter in law been referred to an MFM? Also, a rainbow baby is a living baby who comes after a loss, the rainbow after the storm. For me personally, it also means God’s promise because I feel like He promised me redemption through another baby 🙂 Oh yeah, and the link to the placenta info, I think you just didn’t read down far enough..”Then, towards the end of March I got a call from our high risk doctor in Birmingham, Dr. O. He is the one who performed Lucy’s blood transfusion. He was calling because he had just gotten Lucy’s autopsy results and placenta analysis back. He said her autopsy was normal, but the placenta analysis was not. It showed that I had had a fetomaternal hemorrhage which also contributed to Lucy’s death. A fetomaternal hemorrhage is a random and rare condition when something goes wrong with the placenta and the baby’s blood leaks out into the mother’s body. It’s totally unrelated to kell, BUT it causes anemia in the baby, just like kell. Lucy had two separate things making her anemic. When the doctors performed an amazing blood transfusion that should have saved her life, the new blood just leaked out into my body. Poor baby, it makes me so sad. It also gives me hope because it means her severe anemia wasn’t just caused by my antibodies alone. This means my antibodies are not quite as aggressive as they thought.”
Thanks for your reply! MFM? Dont know that term yet. They will know more in July. Your site is most informative! You’ve definitely done your research!
WS, please check out Factor V Leiden, http://www.mayoclinic.org/diseases-conditions/factor-v-leiden/basics/definition/con-20032637, it could also be a problem, it’s a clotting disorder.
We have this in my family. Unfortunately, I’ve not been tested, as I’m soon to be 60. But, my sister, and her 2 daughters have it, as well as a cousin. I had endometriosis, and suffered a miscarriage early on in my one & only pregnancy. I was unable to conceive again after that. Even after multiple coreective surgeries, and inseminations. Thankfully, I am the Mom of 2 sons, who will soon to be 23 & 22. I was their foster Mom, I brought them home @ 3 days old, and 2 days old. Their adoptions were complete when they were nearly 5 & 6. Short of stitches & stretchmarks, they are my sons through and through 😉
Thank you for telling your story. I have the anti-kell, my husband is kell positive and I received the antibody with my first son. When I was pregnant with my second son they misdiagnosed the antibody with Kidd and not kell so I wasn’t closely monitored because Kidd isn’t as serious. He was born happy and healthy at 41 weeks. With my third pregnancy the kell was discovered and I was sent to a perinatal specialist. Since I am 34 they did the harmony test to check chromosomes and everything was perfect I was going to have a little girl. At 14 weeks I had my first ultrasound with the perinatal doctor and everything looked great but my titers were at 1:16 which I thought was pretty high. At 18 weeks we went for our first Doppler and there was no heartbeat. The doctor does not think kell had anything to do with the loss because he thinks her heart stopped beating a few weeks prior. I know I am still grieving but I can’t give up hope on trying again. I will see the doctor again next month for my follow up but I’m wondering what kinds of questions I should ask and will my titers keep going up or did that have something to do with my baby? Unfortunately I didn’t ask to get her blood drawn so I don’t know if she was kell positive. Thanks so much!
Hi Susan, I am so sorry that you lost your little girl. Finding out your baby has no heartbeat has to be the worst feeling in the world. I’m also so glad your second son was born healthy- things could have gone much worse after the doctors made such a huge mistake! After you found out your husband was kell positive, did they ever do a phenotype blood test to find out if he’s homozygous or heterozygous for kell? If he’s homozygous then all of your kids will be kell positive but if he’s heterozygous (like my husband) then each baby has a 50/50 chance of being kell positive. You should ask about that at your next appointment and if your husband hasn’t had that blood test he needs to have it done. Titers are very unpredictable so I have no idea if they will stay the same, rise or fall. Most women’s titers tend to go up with each subsequent pregnancy. Some go down between pregnancies but bounce back up right when they get pregnant again. Mine were 1,024 from the very beginning of my pregnancy with Lucy (at 6 weeks) and they never changed during that pregnancy, the two years when I wasn’t pregnant or during my pregnancy with Nora. Titers aren’t really THAT important once you are over 8 (the “critical” titer when the baby can be affected.) The most important thing is having baby monitored regularly and getting MCA scans starting between 16-18 weeks. Did you have an autopsy done after you lost your daughter? If so, were there any signs of fetal hydrops- extra fluid under the skin or in other organs? If they did an autopsy they should be able to figure out if she died from the antibodies or not. I kind of agree with your dr though, it sounds unlikely that she died as a result of your antibodies. Of course, I’m not a doctor so I could be totally wrong. Either way, I do think you have a lot of hope for another pregnancy and another healthy baby. So, when you see your doctor next, ask about your husband’s phenotype and whether your daughter showed any signs of hydrops. If she did, then you might need to look into doing plasmapheresis and IVIG with your next pregnancy. There is a great support group on Facebook for iso pregnancies if you want to join. It’s private so you have to be invited by a friend. If you find me on Facebook (Bethany Weathersby) I can get you into the group- they are great and so supportive!
Oh and we don’t know if my husband was the homo or hetero so we will have to do another blood test. I’m assuming he’s hetero since I had such an easy pregnancy with my second son. We will hopefully learn more when I go for my post pregnancy appointment.
Thanks! I’ll find you on Facebook. 🙂
Thank you so much for sharing your story and I am so sorry for your loss. I too have antiK antibodies and my husband is kell positive with a 50-50 chance of passing it on. My first pregnancy resulted in a beautiful daughter in 2011, no problems at all. Our second pregnancy was where the kell antibodies were discovered and we felt so alone. The doctors were ignorant on the matter, seemingly unable to provide answers or give us an insight into what could happen were this child kell positive. There was next to nothing about it on the Internet and definitely not other parents experiences with the issue (not that we found anyway). We had regular scans and blood tests and thankfully my antibody levels didn’t rise. Our second (and kell negative) daughter arrived in 2013. We have just found out we are pregnant again, still very very early I haven’t even notified doctors yet but already I am refreshing myself on the kell situation. I don’t feel so alone now, after reading your story and the comments from these lovely ladies I have gained a much better understanding of what to expect if this baby is positive. I am still fearful, and pray that this baby is also negative like our second daughter but I have hope that wasn’t there before. Thank you all for sharing your stories. Much love to you and your families xxx
I have been following your site since I found your blog many months ago after I started my own about the grief of loosing my son to SIDS. I had a question about the Anti-Kell, which I hope you don’t find frustrating or bothersome. Does breast milk carry anti-kell antibodies. or is it only while carrying the baby?
Sorry for the delayed response…it’s been a LONG week! I am so sorry you lost your son 😦 About the breastfeeding…that is a good question. The amount of antibodies in the breast milk is so small that it doesn’t affect the baby. Every doctor I’ve ever talked to about this has said that it’s perfectly safe to breastfeed in these situations.
I had 4 pregnancies. All the babies were affected by the antibodies. Each time they became stronger. The babies reached 6 and 7 months. Three of the babies were transfused inside the womb. All had transfusions once they were delivered. My little girl was stillborn at 6 months. My little boy became infected and died 3 days after I delivered him. My first was born so sick, but at 22 months died from cancer. My living child is 26 years old. He was born at 7 months ,had his transfusions ,was a bright child and is now a beautiful man. It sounds so sad, but I am so happy that I do have him. I was given a transfusion as a child to save my life, and the doctors told me that it was most likely when I received the antibodies. I wanted a family and I didn’t know I had the antibodies until I became pregnant. I tried to help the babies with the transfusions, but I guess it was out of my hands.
Oh, I am so sorry for your losses! What terrible heartache you have had to face. I am so glad you have your son with you, though. Also, I didn’t know they could do intrauterine blood transfusions over 20 years ago! So interesting. Thank you for sharing.
Thank you for sharing. I was trying to find you in fb but there were several by your name. I just found out my hubby is homozygous for the kell antigen and I am pregnant with our second, about 13 wks along. Would love to join the fb group for the extra support. You can find me on fb! Katee Paine.
Hi Bethany, thank you for sharing your story. I just found out my husband is Kell + and unfortunately is homozygous. I searched for you on fb so I could join the fb group for some extra support as we move forward in this second pregnancy. There were several by your name tho and didn’t want to creep! If there is another way I can join please let me know. Thank you! Your blog was very helpful.
Hello. My name is Jenna and I have a healthy kell positive 2 year old. We name her Hope Emery (Emery after Dr. Stephen Emery who saved her life). At 26 weeks we have our 1st of 5 fetal transfusions. Her anemia was so server that the doctor’s did not know if my baby would survive the night. I don’t think I have been through anything so difficult in my life. We found out that my husband is kell positive and is heterozygous. By the God’s wonderful grace she only had to spend 1 week in the NICU for jaundice….only 1 week! Dr. Emery was amazed that she only needed one week and no transfusions after her birth.
We just found out that we are expecting. I am so scared. Since my husband is heterozygous we have a 50% chance that this baby is negative. I am praying that this is the case!
Thank you for sharing your amazing journey. God Bless!
Congrats on your new baby on the way and I am so glad that your little Hope is safe and healthy after such a battle! You should join our ISO group on Facebook…they will be such a great source of knowledge and support throughout your pregnancy. Just send me a friend request and I’ll add you to the group (you can unfriend me after you’re in the group if you want.) I’ll be praying for you and your baby!
Hi, I have known since 1974 that I am Kell positive.
The reason was a course I took and we used our own blood to test for blood group ‘things’.
At that time (in Scandinavia) I heard that in Norway they did not want blood donors who were Kell positive. I did not really understand why at the time.. I mean the reason, risk for children, that you are testifying about here now. But, the knowledge that I am Kell positive has always stayed ‘with me’, in my mind, and I have never volunteered to be a blood donor. Now I wonder if they test Blood donors for the Kell antigen??? I have told one of my daughters to ask to be sure if they have checked her since she has volunteered to give blood. One year ago I did a gene test (23andme) and could check the Kell so I now know that I am heterozygous Kk (rs8176058).
Once in a while I Google Kell positive and something else (other symptoms) just to see if the Kell can be relevant. This time I found this fantastic blog. Thank You so much for sharing!! It is not much info out there about this and you are So Right – It is very bad that there is not a preventative shot like rhogam but for anti-Kell mothers to be. It is a fact that “The Kell blood group system is complex and contains many antigens that are highly immunogenic. These antigens are the third most potent, after those of the ABO and Rh blood groups, at triggering an immune reaction.” http://www.ncbi.nlm.nih.gov/books/NBK2270/ “. I am a mother of 3, one son and two daughters and yes I can’t help wonder if I have past it on and it will cause problems for future generations. No grand children yet and I hope (for the next generation) that my son is Kell negative. Don’t know if the odds are 50-50 or worse (my husband, the children’s father, is not tested).
Again Thank You so much for sharing your experiences and knowledge! /Lela
That is so interesting- what a strange way to find out that you are kell positive! It’s good that you have never donated blood. They don’t screen for it here in the U.S. so many women develop antibodies after they receive a blood transfusion. It is possible that the kell antigen could cause problems down the road for your children/grandchildren but there are new treatments in the works right now that should be ready in a few years. Dr. Moise is developing a drug that the pregnant woman with antibodies can take to prevent the baby from being harmed…no blood transfusions or invasive measures needed. So, even if someone developed antibodies during pregnancy, there will be very effective and (hopefully) safe treatments available to them soon. That gives me a lot of hope. Anyway, thank you for sharing your story!
Hi Bethany, this is Lela again.
I wanted to tell you that I wrote to the University Hospital in Oslo, Norway.
Asked if I had gotten the correct information many years ago (1974) that they did not want Kell-positive blood doners and I also gave a link to your website.
A week ago I got a nice reply from Dr Lise Sofie H. Nissen-Meyer at the Blood Bank there. This is part of what she said: (translated by me)
” In Norway, we test all blood dispensed from blood banks, with regard to the ABO, Rh and Kell system. Precisely because, as you write, antibodies to these can cause very strong reactions.
Kell-negative patients receive Kell-negative blood, and especially women of childbearing age.
However, we welcome Kell-positive donors. If you otherwise can give blood you are welcome to sign up with us! ”
So it was wrong of me to say that they did not want Kell-positive donors in Norway – BUT I was very happy to read how she described that they test for Kell compatibility before giving someone blood and that she especially mentioned women of childbearing age!
I have also written to the University Hospital in Uppsala, Sweden – if/when I hear from them I will report back, hopefully they also test all blood donor & patients with regard to the Kell system.
You said: ” They don’t screen for it here in the U.S. so many women develop antibodies after they receive a blood transfusion. ”
Are you very sure that Blood Banks in the USA do Not work like they do in Norway? If indeed they don’t – Perhaps they need to hear (get many letters?) from women in the USA. Sorry for saying that if it has already been done? I’m sure everyone agrees that if this (blood transfusion) way of developing antibodies could be eliminated that would be a very good thing – even though it doesn’t solve the other pregnancy related reason for getting anti bodies.
Kind regards /Lela
My daughter is pregnant with her 2nd child. She is 29 weeks. On her first set of lab work (with this pregnancy) her anti kell came back positive. They said not to worry that sometimes they get back false positives. It would be fine and they would retest it when they did the next lab work on her. She got that result back last week and it was still a positive. They said it was a 4. They didn’t know what to do so they called the lab and a pediatrician and then called me back and said they didn’t think there was any reason to worry. Unfortunately that didn’t help me at all and I am extremely worried and having a hard time finding did g out much about it. She was not positive when she had her 1st child. She ended up loosing alot of blood so they had to give her 2 pints. Can anyone enlighten me on if a 4 is something g that should or shouldn’t be worried about? They haven’t said anything about testing her husband nor have they said anything about any further testing or sending her to a specialist.
Hi Evelyn. Congrats on your newest grandbaby on the way! It sounds like the doctors have no idea what they are doing (which happens often when it comes to these types of pregnancies) but your grandbaby will probably be fine. The doctors should have sprung into action immediately when she tested positive for anti-kell antibodies in the first trimester. Her husband should have been tested for the kell antigen right away and if it came back positive, your daughter should have been referred to a high risk pregnancy specialist (MFM or perinatologist.) Thank goodness her titer (antibody level) is only 4! That is very low. The baby isn’t in danger unless the titer gets to 8 or above. The titer can rise at any time, though. The baby’s father needs to be tested for the kell antigen as soon as possible. It’s very good news that your daughter has had a blood transfusion. She probably was exposed to kell positive blood during the blood transfusion and created the anti-kell antibodies in response. This means she (probably) did not become sensitized by giving birth to her first baby, like I was. Her husband only has a 9% chance of being kell positive. If he is kell negative, then the baby can’t possible have the kell antigen and will be completely safe from the antibodies. So, there is a 91% chance that the baby won’t be in any danger at all. If the father is actually kell positive then the baby STILL is probably not in danger since your daughter’s titer is below 8. Hopefully that wasn’t too confusing! Your next step should be to make sure the baby’s father is tested for the kell antigen. Good luck and let me know if you have any more questions! Oh yeah, and did you send me a friend request on Facebook? Would you like to join the ISO Moms Facebook group? they are a great resource and wonderful support group
Thank you so much. That helped alot. I got more information from you then I have been able to get from any of the doctors. Thank you.
Just had my first scan with my 3rd baby. We are 12+4. I have just been told that my anti-k antibodies have gone!!? It has been 4.5 years since I carried my kell positive daughter, the antibodies were discovered and monitored with my second daughter two years later though she was negative. We were expecting this pregnancy to be much of the same monitoring and blood tests and scans etc, praying that this baby would also be negative. Our prayers were answered in a different way it would seem 😊. There are no antibodies in my blood because I haven’t ‘needed’ them since carrying my kell positive daughter….it would seem they wear out after 4 years or so? Has anyone else experienced this? Maybe a development that doctors have not encountered before that could change how we look at kell?
Hey Jaime, congrats on your third baby on the way! So exciting 🙂 The one thing I always remind myself of when it comes to titers is that they are unpredictable. Some (rarely) do seem to fade away and become undetectable or too low to titer. Some get higher even when the woman isn’t pregnant. Most of the time, they don’t disappear regardless of how long it has been since the last pregnancy. Many women have asked their doctors if they should wait between pregnancies to let the titer get lower but the doctors almost always say that it won’t work. My titer has never changed, whether I’m pregnant or not, it has always been 1,024. That is great that your antibodies are undetectable, though! I still think you should have regular blood checks throughout the pregnancy just to make sure that your titer doesn’t jump back up. Sounds like your baby is going to be great. So happy for you!
Thank you 😊 It was almost like a dream to be told they were undetectable and I was rather surprised that they now don’t want to take my bloods again until 28 weeks! Not even to double check the first result. Do you think I should speak to my gp? In all my research I have never read about the levels changing or disappearing and our doctors said they don’t know enough about kell to know whether this is a regular thing or not. I never knew what my levels were, I don’t think they tell us here in the uk. Xxx
Hey Beth. When I was interning at a blood bank, I was able to test my husband’s blood to check what antigens he had. Sure enough he was kell positive which really disappointed me because I know how aggressive anti-kell antibodies can possibly be. Since I know ahead that there’s a 50% chance that my future baby can be kell positive, is there anything my doctor can do to ensure the pregnancies will go smoothly? Like is there any way we can even prevent my body from producing aggressive anti-kell?
Sorry for the delay! Unfortunately, there is no way to prevent the antibodies from forming. Since it’s so rare, no one has developed a preventative shot like rhogam. Some women have strong reactions and produce high levels of antibodies (like me) but more often than not, they don’t have a reaction at all. Most women never produce antibodies, even when exposed to the antigen (according to the doctor)
The Rhogam shot is made by antibodies taken from people who carry the RH antibody, I don’t understand why they can’t make the same for Kell – mother to be. Do you know if they are in anyway close to coming out with a shot..?
Yes, you’re right, they could make a preventative shot the exact same way they make rhogam but they just won’t. Kell blood is so rare that it wouldn’t be profitable to the pharmaceutical companies and no one wants to pay to have it developed. I hate that it COULD be available but no one wants to invest in it. One encouraging thing, though, is that Dr. Moise is developing a new treatment for these high risk pregnancies that wouldn’t involve blood transfusions at all. Basically they are developing a drug that the pregnant mother would take to prevent her antibodies from going through the placenta to the baby. The baby wouldn’t ever get anemic in the first place and wouldn’t need any other treatment. It should be ready in the next few years.
They are going to have to come up with something, with all the new procedures today allowing babies to actually survive (Praise God) Kell won’t be considered rare for long. I am Kpa- with antibodies, Kpa is the least aggressive in the Kell blood group. There for my pregnancies weren’t high risk to the baby only to myself since they did not have any compatible blood if I’d had needed any.
I did want to say congratulations to your family on the long awaited arrival of your new addition. It’s so hard to wait but in God’s time all things are worth the wait. Your little girls now have the strongest big brothers a little girl could ask for.
Bethany, I am trying to find the Facebook group but am not able to find it. There are 3 Bethany Weathersby that come up when I search your name. How do I find the group? Thank you.
Hey, I just saw your friend request…you found me!
My girlfriend just found out she has kell. I’ve looked and haven’t found much. We both want to know if I could get it and if it is life threatening to her. I’d very much like to know so I can help her and try to get her to understand.
Hi! So, kell is not harmful at all. It’s just a blood type and it isn’t dangerous. Anti-kell antibodies are made when a kell negative person is exposed to kell positive blood. The anti-kell antibodies aren’t dangerous either. The only time the antibodies can be dangerous is when a woman (with anti-kell antibodies) is pregnant and the baby is kell positive. The baby might be in danger but the mother isn’t in danger at all. If your girlfriend has anti-kell antibodies then she only needs to worry when she gets pregnant. To make sure her baby stays safe, she needs to see a maternal fetal medicine specialist after she finds out she is pregnant.
Thank you for sharing this. I actually delivered a healthy boy (my first after 5 daughters) after receiving a transfusion with my 5th daughter. I had no idea what Kells Senstizied was until I was pregnant with Noah. What a a journey. All I can say is that the drs told us to abort, I do not believe in that so we went forward… and after a long drawn out pregnancy and very scary Csection… Noah was born just fine. I do have health issues now and wonder if it is because of all this. I hope and pray that you are well. God bless you. This is the first article that has made sense after all these years.
Wow, thank goodness you didn’t abort baby Noah! One of the first options the doctors gave me was to abort any kell positive babies because they “wouldn’t survive.” Anyway, the anti-kell antibodies in your body can’t cause any health problems for you at all, unless for some reason you are ever given a blood transfusion with kell positive blood.
Yes it does make sense and I really appreciate your input on this! Thank you! So if she does have Kell antibodies would she need Kell negative blood then? 🙂 Do you know how long the Kell antibody test usually takes for results?
Sorry, the reply above was meant to reply to your post to me earlier today! Somehow it posted down the bottom of the page and doesn’t make sense on it’s own!
Ha! That’s ok, I figured it out 😊
I just found out that I am pos. for anti-Kell antibody and am 11 weeks pregnant with a titer of 16. I’ve been looking on reputable websites on the ranges. Do you have any information on that? I did read that anything above 8 is danger to my baby (comments above) but would like to see more information if you have it, please!
I have not had my husband tested yet since I just found out today. My OB referred to me to parentologist. Let’s hope he is negative and lets hope that this precious baby girl growing inside me is also negative.
Hi! So sorry you have to deal with these horrible antibodies! You are right about the titer levels. Once your titer hits 8 it is considered critical, which means it has the potential to harm your baby. 16 isn’t too high, but definitely in the danger zone so you need to have hubby tested and start regular MCA scans if he is positive for the kell antigen. I just noticed your friend request on Facebook so I’ll head over there now…
Thank you for your fast response and for having this amazing website!
Hello, reading your story is very familiar. Except, my babies have survived.
Thank you for writing this up. I am now on my 5th pregnancy. And a bit nervous about the care I will receive. My prior dr. Who was very knowledgeable, very serious about this, very educated…insurances changed. She was excellent. I received very very good care from a MFM in San Francisco, CA.
In praying for a miracle and God’s guiding hand in this pregnancy.
Hey Nicole, so sorry for the delayed response! I’m sorry you have to deal with these terrible antibodies. If you are on Facebook you should come find me so I can add you to the Iso Moms group. They will answer any questions you have and support you throughout your pregnancy. They are amazing 🙂
Thank you very much for sharing your information and knowledge with us all!
I’m sure that like me, most women feel completely lost when they find out this is an issue…that it even exists. 24 hours ago, I had never heard of Kell Antibodies. My doctors office hasn’t explained anything to me. They called me and said that my boyfriend needs to go to the local lab and tell them that he needs to have his blood drawn and tested for the Kell Antigen (I’m currently 28 weeks pregnant with our baby girl). They didn’t say that I had the Kell antibody or anything. We went to the lab where the tech said he wasn’t sure what type of test he was supposed to perform as he had never heard of the Kell Antigen. He was nice enough to print out the results of my blood work and give to me. He did go ahead and draw blood from my bf and talk to his superior to make sure the correct test would be performed (after much discussion lol).
Of course, as soon as we got to the parking lot, we googled Kell Antibodies. According to my test, my titer number is 1:8. Am I correct, after reading what I could find so far, that if my boyfriend has the Kell Antigen, we should be good? I’m just trying to get my head wrapped around what we may be dealing with here….I’m certain I got the antibodies after a transfusion several years ago after delivering my perfectly healthy little boy via c section.
Thanks again and I really appreciate you!!
Hey Felicia, so if your boyfriend does have the kell antigen (“kell positive”) then your baby could be in danger. If he is kell negative then the baby can’t be harmed by your antibodies at all and it should be a normal pregnancy. Since you were sensitized by a transfusion, odds are that your boyfriend is kell negative. Only 9% of the population is kell positive so your boyfriend has a 91% chance of being kell negative. That’s good that they already drew blood for his blood test. Just make sure they tested him for the kell antigen and NOT anti-kell antibodies. If you come find me on Facebook (Bethany Weathersby) I can add you to the Iso Moms group and they can answer any questions you have. They are awesome!
It’s so great to read your article you really seem to understand so much about this.
I’m so sorry about the loss of Lucy 😦 but I’m so glad it has inspired you to reach out and help others.
I have had the news today that I have anti k antibodies and am now awaiting an app with a fetal specialist where they will test my husband.
I had a baby In November 2015, horrific lots of bleeds, low lying placenta, preeclampsia. I was induced at 36 weeks had a fast 4 hour labour but then they couldn’t stop my bleeding, I was put into an induced coma and lost 5 litres of blood so had quite a big transfusion. My family were told to say goodbye. 😢 fortunately I pulled through and here I am now 6 months later already nearly 3 months pregnant, I know I’m crazy but first took years so we wanted to try for another expecting it to take a while. I’m over the moon about baby but now so worried about this anti k! I didn’t have this with baby 1 so I’m hoping this has come from the transfusion. If hubby test is negative does that mean there is nothing to worry about or is there still something to worry about? Id convinced myself this time would be easier so this has really hit me hard. 😪
I’ve tried to find you on Facebook but there’s a few and I can’t tell which one is you.
Sent from my iPhone
Wow, I am so glad you pulled through after such a scary experience! Since you probably were sensitized from the blood transfusion, the odds are in your favor to have a normal pregnancy. Your husband only has a 9% chance of being kell positive. If he is negative, then your baby isn’t in danger at all, even if your titer is extremely high. The antibodies cannot hurt your baby if the father is kell negative. I bet this pregnancy will turn out to be much easier than your last one!
I just recently had a back surgery the morning of my back surgery they drew blood to see what blood type I was in case I needed a blood transfusion. All of a sudden I’m getting all these questions about had I ever had a blood transfusion before, I stated I hadn’t, but that in 2001 I had a platelet transfusion during the birth of my son. I proceeded to ask them why what was going on, long story short somehow when they drew my blood it came back with some type of antibody in it and they needed to figure out what it was because I needed a special blood. Mind you I have 3 children and never once heard of anything of this. Except in 2002 I went to donate plasma and they stated I couldn’t which I was completely confused about because I had donated prior to that when I was pregnant (that’s kinda how I found out I was pregnant I got really sick after donating).. So my surgery was pushed back until the blood bank could find out what this anti-body was in my blood they were very confused and really thought I had a blood transfusion but I hadn’t. Anyways they eventually figured it out was able to get the type of blood I needed if I did need it and proceed with surgery. So after my surgery I kept asking and no one knew they referred my to the blood bank but I have my chart and looked at my results and this is in fact what anti body…. I am curious how did I get this?
Hey Tanya, so you couldn’t have gotten the antibodies from the platelet transfusion because they don’t give you red blood cells during a platelet transfusion (the red blood cells would have exposed you to the kell antigen and caused your body to react with antibodies.) That means you got the antibodies when you gave birth to your last child in 2001. Apparently, that child is kell positive and some of his blood mixed with yours during the birthing process and your body responded by producing anti-kell antibodies. This also means that your son’s father is kell positive as well and possibly your other children. Any future pregnancies will be high risk. You are very blessed that you didn’t develop the antibodies until your third child was being born! Also, being kell positive isn’t dangerous to your family members, it’s just a blood type. BUT when your son(s) have children it is something they will need to be aware of because their wives could possibly develop antibodies making pregnancies high risk. Thankfully, the treatment options are always expanding and progressing and there will probably be a simple drug available by then to prevent the antibodies from hurting the baby.
So I tested positive for anti bodies in the email I reviewed it said you have anti-k and anti-c. I didn’t have this with my first child and never had a transfusion so we had my husband checked and his result said “antigen k-“. I’m confused as to what the “-” after k means. Someone who works in the field said she interpreted is as he has antigen k and it’s heterozygous. It’s been the weekend so no Drs to help. Any ideas?
Do both of your children have the same father? If so then he is definitely kell positive and I would assume the – means heterozygous like the woman told you. Almost all people who are positive for the kell antigen end up being heterozygous. It’s the more recessive one of the two and it’s the one you want! If your husband is heterozygous that means only one of his parents is kell positive and any children of his have a 50% chance of being kell positive. If he were homozygous it would mean that both of his parents are kell positive (very unlikely) and all of his children have a 100% chance of being kell positive. Do you know what your titers are? How many weeks along are you?
I tested positive for anti-K due to several blood transfusions with my first born. I just found this out and my husband has been tested because we are expecting our 2nd. He tested negative for the antigen K but tested positive for the antigen k. What does this mean?? In the clear or should we be worried?
So, I think that means your husband is kell positive, but heterozygous instead of homozygous. If he is heterozygous (recessive) then your baby has a 50/50 chance (like all of my babies) of being kell positive. If your baby is kell positive then (s)he could be in danger. How many weeks along are you now? Do you know what your titer is? Have you seen a maternal fetal medicine specialist yet? If not, then you need to get an appointment set up.
I’m 11-12 weeks along. The doctor I spoke to this weekend said my titer was higher but that could be because my blood transfusions were done about 18 months ago. I’m very new to all of this. I will be talking more to my obgyn on Tuesday. This all emotionally and mentally draining :(:(
Ok, well if your titer is high, you definitely need to get an appointment with an MFM in the next few weeks and have your first MCA scan scheduled. You should have your first scan at 16 or 17 weeks and 18 weeks at the very latest. It is very emotionally and mentally draining. I am so sorry you have to deal with all of this high risk stuff. It will all be worth it in the end though.
My heart breaks for you. I had over 30 miscarriages, one still birth and two children that died shortly after birth, about 20 years ago. I didn’t want to give up, but eventually did.
Dad carries the antigen. This is their second pregnancy and we are terrified. Dr’s are overly selective about what they choose to tell us. Not going over well with me as it might with many because of my history.
I would like to join the FB page you suggest, but can’t find it.
Mummy is very private and would not join, but I sure will, if you will accept me. I want all the first hand info I can get. Perhaps, given my history, once again, I can be a comfort to those who have had loses.
Bless your soul.
Oh my goodness, I am so sorry for your losses. So many losses 😦 I read your comment a few times but can’t seem to figure out who has antibodies. Maybe you accidentally left out a sentence?Also, the Facebook group is “secret” so only those invited by a friend can join. If you send me a friend request (Bethany Weathersby) and a private message explaining who you are, I can add you!
Indeed, I wasn’t clear as to who is in this situation. It is my niece.
Ok, so your niece tested positive for anti-kell antibodies and her husband tested positive for the kell antigen, right? Do you know how many weeks she is and what her titer is? It’s not a good sign that her doctors are being “selective” about what they choose to tell you. They might not actually know much about this disorder and might not know how to treat it. It is a very rare disorder so most doctors or MFMs don’t have much experience dealing with it. That is why it’s VERY important that you or your niece take charge, gather as much info as you can, and make sure the right treatment protocols are being followed. Come find me on facebook!
This is our second anti kell pregnancy but the first was’not discovered until our daughter was born.
I have lots of questions. I requested you as a friend on FB, can I be added to the group please?
You’re added 👍
My name is Rosalie when I found out that I was pregnant I was in Mexico I came here to Arizona when I was 6 months and I got a few tests that’s where they found out I had this anti Kell at first it was pretty scary but I had so much faith in God I really didn’t understand what was what was going on with me until actually till now thank God my son is 7 years old everything it went fine I mean every week I was going 3 times to the doctor being checked they induce me when I was 37 weeks the thing now is that I would love to get pregnant again but I’m afraid c it’s going to be a higher risk. I was going to tie my tubes that time but a nurse told me that if God had gave me the chance of having a healthy boy what makes me think that God will never give me the chance of having another healthy baby
Hey Rosalie, sorry for the delayed response…we’ve been out of town and my kids have been keeping me busy! I’m so glad your son is healthy and you didn’t have your tubes tied! You definitely have hope for another baby or two or three 😉 The baby is only in danger if the father is kell positive (9% chance in Caucasians, lower chance in other races.) Even if the baby’s father is kell positive you can probably have a healthy baby with the right treatment and monitoring.
Hi, I just wanted to say that for a person without a medical background you’ve made a lovely summary of anti-kell antibodies. I’m a doctor and was just doing a google search to brush up on my knowledge on this topic and came across your site. If only us doctors could explain things as well as you have 🙂 thanks.
Thank you so much! This is one of the most encouraging comments ever written on my blog. I often feel very inadequate, almost sheepish, about giving out so much medical information and advice when I’m not even a medical professional. Thank you for the encouragement. My main goal is to give other women the information that I didn’t have when I was pregnant with Lucy. If I had read my blog right when I found out I was sensitized in 2012, my first daughter would probably be alive. I just couldn’t find much information on it back then.
I’m so sorry to hear about Lucy
I am currently 9 weeks pregnant and just found out I have anti k antibodies. I have never heard of this or couldn’t find anything on this before I read your blog which helped me out so much. I’m thinking I got this from a still birth I had in 2011 at 34 weeks. I had to get 4 pints of blood back, that’s the only thing I can think of and of course I am super worried and crying because I cant go through another loss again it was very hard. I was wondering if it was possible to give your partner the anti k antibodies somehow if your blood got them or from sex? I’m just so worried and hoping he comes back negative 😔
I am so sorry that you lost your baby and now you have to deal with these antibodies on top of that. Do you know why your baby was still born? Could you have already had the antibodies and not known about it? I’m just wondering if the antibodies possibly caused you to lose your baby. Or you could have been sensitized by the blood transfusion after your loss. Either way, you have a lot of hope for a healthy baby with the right treatment and monitoring. The first thing you need to do is have the baby’s father tested for the kell antigen. And come join our Iso Moms group on facebook.
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Hello so far we have only learned that my titter is 128 and that we’re being referred to a specialist. I am 13 weeks, is this titter high or low ? Today is the 11th, my next ultra is the 16th, then the 19th my titter will be rechecked and we’ll see the specialist on this date as well. We’re very scared and all we’ve heard is bad news and outcomes. The doctor said based on this titter number they’re positive that the baby is positive. But by what I’ve read that isn’t true. Is there a possibility he is wrong ?
Hey Christie, so a titer of 128 is pretty high, but it doesn’t mean baby will be affected or that the baby is positive. Titer level is not indicative of whether baby is positive or negative, it just shows how strong your immune response was when you were exposed to the kell antigen when you were originally sensitized. Have you ever had a blood transfusion? Has baby’s father been tested for the kell antigen? If he is positive then you need to make sure the specialist is being very proactive when it comes to monitoring the baby. When you go to your appointment with the specialist on the 19th, ask him when your first MCA scan is. If I had a titer of 128 I would insist on having my first MCA scan at 16 weeks to make sure baby isn’t anemic.
Hiya, I was reading your article about the Anti-Kell…. This is my third child and the only one that ha been anti-kell positive, I’m 29 weeks and 5 days today and only found out yesterday and asoon as I found found out the midwife basically said go home and we’ll see you in two weeks without giving me any indication of what’s going to happen etc.. I’ve tried ringing the hospital to get in touch with my consultant and also rang NHS and my doctor but know one available to speak to me. My baby up to now isn’t anaemic, I remember my consultant saying months ago that if the baby was kell positive which she is that I would get set off at some point. I’ve been reading loads of stories online about women that have the same problem and they’ve been induced anywhere from 32 weeks up to 36 weeks, I’m wondering if I will also be induced? I’m getting no answers from anyone and really worried as to what will happen and if I do get induced early what will happen with my baby straight after? Will she be put in ICU? Thanks & hope to hear back from you.
Hey Jessica, I am so sorry it took me this long to reply to your comment! So, just to make sure I understand…You have anti-kell antibodies, correct? You said your baby is kell positive. How does your midwife know baby’s blood type? Did you have an amniocentesis? Do you know what your antibody titer is? Also, how do you know baby isn’t anemic? Have you been having regular MCA scans to check baby for anemia? If your baby really is kell positive, it is dangerous to go two weeks without checking on baby. A lot can happen in two weeks and baby could be in distress without you knowing it. The reason women are induced early is to protect the baby from the antibodies. The doctors have to decide whether baby is safer in or out, so even if baby has to come early, if that is safer then it is the best decision. Some babies have to be born at 26 weeks and some can go all the way to 38 weeks (like my Nora.) It all depends on how well baby is doing and most of the time, baby’s safety is directly linked to how much your doctor understands about these antibodies and how to treat these pregnancies. You have to be the one to make sure the doctors are monitoring your baby enough and giving the right treatment. If you are on facebook, come find me (Bethany Weathersby) and I will add you to the ISO Moms facebook group. The women are so supportive and knowledgeable. Without that group, I honestly don’t think my baby Nora would be alive today.
this is making me worried I have been pregnant three times I lost the second baby about half way thru… but the doctor never talked about this or said anything and now that I tested positive to kale I just really want to see how early in can have my daughter which I’m 28w1d but she is measured at almost 31w i had a blood transfusion with my first kid I’m so scared and it’s gonna take almost 2 weeks to see a specialist… what do you recommend I do because I personally know I’m anemic I have to take a extra iron supplement to keep it afloat I’m always low……
So sorry this reply took so long!! Do you know what caused your loss half way through the pregnancy? Were antibodies detected during that second pregnancy? I am SO sorry that you lost your baby. You should have the baby’s father tested for the kell antigen as soon as possible and try to get in with the specialist for an MCA scan as soon as possible to check the baby for anemia. Also, your anemia has nothing to do with kell or with your baby and doesn’t affect the pregnancy.
I am soo happy I came across your story my obgyn recently found out I have the kell antibody. got it during my pregancy found it at delivery, thankfully baby is fine she’s a month old but he has been trying to talk me into getting my tubes tied (I have 5 girls already) but I still didn’t want too soo he told me about kell and said its also called kell kills that there’s no cure and its high risk but baby probably won’t live I think he was really just trying to scare me in to a tuble I don’t plan on anymore kids but don’t want a tuble your post has taught me a lot about kell THANK YOU
I’ve heard “kell kills” too. I think they teach that in medical school so it will stick with the doctors. Kell is the most dangerous of all the antibodies. I’m so glad you didn’t tie your tubes…you never know what God has in store for you in the future. And your dr was wrong that your baby probably wouldn’t live and there is no “cure” for kell. With the right treatment and monitoring, you would have a great chance at a healthy baby.
My husband and I have been thinking about you a lot recently as our Baby Ava turned 8 months a few days ago. We lost our son carter due to anti Kell and I had reached out to you back in 2014 soon there after. And with it being Infant loss month it has been hitting me harder than most lately what he would look like, what he would sound like, what he would even smell like if that makes sense! Some think I’m crazy for even thinking that way but it’s so difficult to think that way! Our little girl Ava just turned 8 months old two days ago! We got pregnant with her in June after Carter passed away and she was born on Feb 18th 2016 at 37 weeks! She’s such a ham! Sometimes I wonder if Carter lives in her. I am sure she does. I miss him so much! So so much! My husband and I want to thank you for giving us so much strength and comfort when we needed it most in your story! And we send our thoughts and our love to your family!! We hope all is well!!
Congrats on your baby Ava! I am so glad she is here alive and healthy! And of course I understand your desperate ache for Carter. That isn’t crazy at all to miss him and to wonder what he would look like now, smell like, sound like, etc. It’s just as normal for you to mourn Carter’s absence as it is for you to celebrate Ava’s presence in your life. I wish everyone else saw that. It often feels like people accept and praise parents for celebrating their living children, but they judge parents for mourning their missing children. Why is that? You are doing an amazing job parenting Carter and Ava in their own unique ways. Don’t ever apologize or feel guilty about loving and missing your son. I miss Lucy every single day and think about her all the time, just like i do with my other kids. That will never change because she will always be my daughter and Carter will always be your son too.
Hi my name is anna.i hv read your artical about antibody kell.iam mother of three beautiful girls.iam pregnant again with my fourth child .But during my routine blood test i hv found out that i hv anti body kell.never heard of this before i think i got this in my third pregnancy when i hd blood transfusion.iam very worried about my child now.i hv few questions.if i hv got this in my third pragnancy does this mean that i was kell negative and after blood transfusion my boody develope this anti body kell.and also blood transfused was kell possitive.After the birth of my first perfectly healthy child .i hd a miscarriage i was 6 weeks at that time.And i had d&c.After that i had two perfectly healthy pregnancies.I hv this question in my mind that after miscarriage and d&c i didnt hd this anti kell antibody found in my blood as i hv written above that i hv two beautifull and healthy daughters after my miscarriage.Does this mean that my husband is kell negative.Am i right.please correct me if iam wrong.And after reading ur article ihv asked my gyno that if my husband is kell negative than these antibody k is not going to harm my child but my gyno said no this doesnt happen and told me that these antibody attack fetus red blood cell it dsnt matter if my husband kell possitive or negative.i hv also given blood test to check titter levels.please reply bk soon
Hi Aneela, so sorry you are dealing with these antibodies. It sounds like you might understand more about the antibodies than your gynecologist. You are right that the antibodies can ONLY hurt the baby if your husband is kell positive. You will not know if he is positive or negative until he has a simple blood test done. Your OB or your husband’s regular doctor can order the blood test. They need to test him for the kell antigen, not the antibody. You are kell negative (negative for the kell antigen) and you probably were exposed to kell positive blood when you had the blood transfusion. Your body had a reaction and made anti-kell antibodies so you are still kell negative but you are positive for anti-kell antibodies. So your blood will fight against kell positive blood. If your husband is kell negative like you, then your baby is too and your body will not fight the baby. Just get your husband tested as soon as possible and tell your gynecologist that he needs to research anti-kell antibodies some more before telling his patients wrong information.
Hi bethany i hv sent you friend request on face book aswell please accept it.
I just saw it! I will add you to the ISO Moms group!
Hi bethany i hv just got my titter report and it says my titter level is1:4096 positive
Ok, unfortunately that is a VERY high titer. How many weeks pregnant are you now? You need to have your husband’s blood tested as soon as possible to find out if he is positive for the kell antigen. If he is positive, your baby is probably in danger and will probably need very close monitoring and intervention to survive (plasmapheresis, IVIG and intrauterine blood transfusions.) The monitoring and treatments would need to start pretty early in the pregnancy so that’s why it’s very important to find out if your husband is positive or negative. I think he has about a 25% chance of being kell positive if he is of Arab descent. He has a 9% chance of being kell positive if he is caucasian and about a 2% chance if he is black. If he is negative then the baby is completely safe, no matter how high your titer is. Have you been able to get your husband in for a blood test yet?
Thank you for your post. I read it last summer, a few times when were diagnosed with anti tell as well with our second child. Our daughter is now almost a year old, doing well. Was wondering if anyone follows any specialist or has any type of screening because of their history of Kell? I talked to a hematologist and they said no, but sometimes I feel like Im missing something. Thank you!
I’m so glad your daughter is doing well 🙂 Thankfully the real dangerous part is over for you and your daughter so there is no need to be followed by any specialist. If your daughter had HDFN and was anemic or struggled with jaundice she should probably have her hearing checked when she turns one. Sometimes that can cause hearing loss but not usually. I had Nora’s checked right after her first birthday and it was perfect. If you or your daughter (if she is kell positive) ever need a blood transfusion you will need to tell the doctors that you are kell positive and need kell negative donor blood. Also, don’t ever donate plasma (not sure if you’re allowed to donate blood either) since it could be harmful to the recipient. I think that is it!
You wrote: “If you or your daughter (if she is kell positive) ever need a blood transfusion you will need to tell the doctors that you are kell positive and need kell negative donor blood. ”
Can you please explain what you mean by that? Are you saying that ‘people’ who are Kell positive (I am) should make sure they get Kell negative blood if they need a transfusion? Why?
So sorry Lela, I was falling asleep while writing that last night! You are right, that didn’t make much sense. What I meant to say was if YOU need a blood transfusion ever, you will need to make sure they give you kell negative blood since you have anti-kell antibodies. If they give you kell positive blood there will be a reaction and your body will destroy the red blood cells they gave you. Your daughter is fine since she doesn’t have antibodies. Thanks for pointing that out to me! I need to only reply to comments in the mornings with a cup of coffee in hand 🙂