I know most of you won’t be very interested in this, but I thought it might be good for me to post a link to Dr. Moise’s study on plasmapheresis and IVIG. Dr. Kenneth Moise is the maternal fetal medicine specialist who will be treating me in Houston, Texas. I have been doing plasmapheresis and IVIG since I was 11 weeks pregnant and it is probably the reason Nora is still alive right now. My doctors were not going to do this treatment with me, even though I have lost a baby and I have a very high antibody titer (level.) This treatment isn’t the normal protocol and is still considered somewhat “experimental” so the doctors usually don’t offer it initially. This is why it’s important to get this information out there. I printed off this study and took it to my doctors and asked them to reconsider allowing me to do the treatment. I also emailed Dr. Moise and gave his email address to my doctors. They contacted him and then agreed to try using his protocol, even though they emphasized that they didn’t know if it would work.
The most amazing thing about the study is when they compare the women’s previous pregnancies (without the treatment) to the most recent pregnancies (with the treatment.) Out of the nine women in the study, seven of them lost their babies in the previous pregnancy. They lost them at 17, 18, 19, 20, 25, 28 and 31 weeks gestation. With their next pregnancies ALL of the women’s babies survived because they were treated with plasmapheresis and IVIG. The babies were born between 27-38 weeks.
If you are pregnant and have antibodies, this study could be very helpful for you. I think it could be especially helpful if:
- you have one of the most aggressive antibodies such as anti-D or anti-kell
- you have a very high titer (in the hundreds or thousands)
- you have lost a baby to antibodies in a previous pregnancy
- your baby was severely affected by antibodies in a previous pregnancy
If you are in one of these groups I recommend you print off Dr. Moise’s study and take it to your MFM, preferably in the first trimester. Talk to your MFM about possibly trying this treatment. I asked my MFMs about trying this treatment when I was pregnant with Lucy, but they said she would be fine and didn’t need it and it was experimental. It was my first sensitized pregnancy so she should have been fine, but she wasn’t. Instead of pushing for the treatment, I let it go. I always wonder if she would have survived had we tried the treatment. If you feel like this treatment might be helpful for your baby, keep pushing until they agree to try it. If they won’t, look around for a second opinion with a different MFM, even if you have to drive a ways to get there. I am not a doctor or an expert on this kind of thing, but I am a mother who has lost her child and I hope you can learn from my story. I would love for Lucy and Nora’s story to help another baby. Here is the link to the study:
*UPDATE- Our kell positive baby Nora was born healthy and happy at 37 weeks and 6 days on July 19th, 2015. I know she survived because of the plasmapheresis and IVIG. I have also met several other women in our Antibody Facebook group who have lost babies to antibodies and then have been able to go on and have healthy rainbow babies after being treated with plasmapheresis and IVIG.
Losing Lucy and Finding Hope 
Thank you for your post! It’s really hard to find information about antibodies and further pregnancies. I’m grateful for your help!
Take care of you and your precious Nora! Thinking of you
I lost my baby boy last januari. After research we found out i have had intervillositis,a auto immuun system problem. Next round i will get ivig,even before conception.
I am so sorry that you lost your little boy. It is the hardest thing in the world to live your life without your child. I am glad that they found a reason, though, and it sounds like it is treatable. I hope the IVIG works well for you like it has for us. I’ll be praying for you!
Hi Its experimental and there are no garantuees. Its a very rare condition and i am so nervous to try again….it is the hardest thing i have had to go through …..i am so sorry for your past loss and glad ivig has worked for you. How often were you given ivig?
2015-06-17 16:09 GMT+02:00, Losing Lucy and Finding Hope
Oh that is really stressful. It is so hard to try again with so much risk. I was given two back to back rounds of IVIG the first week and then once per week after that. It was a very high dose- the highest dose the nurse had ever given. I hope the IVIG works for you!
Thats a lot of ivig,i will be given it every two weeks pre conception. And it takes several hours each time….. Weekly scanning and hope all goes well.
2015-06-21 4:47 GMT+02:00, Losing Lucy and Finding Hope
hi! i’m pregnant {11w} with our fourth child, our second pregnancy to get a positive antibody screening for anti-kell. our pregnancy before this was monitored by MCA dopplers starting at 17-18 weeks and luckily remained WNLs up until she was delivered at 38 weeks, perfectly healthy. my husband is heterozygous, so this pregnancy again has a 50/50 chance of being affected. do you know of any NIPT that test for the kell antigen in the fetus? i see my MFM next week for a consultation..
Congratulations! I’m so glad your last pregnancy went so smoothly…I wonder if your daughter was kell negative? Or maybe your antibodies just weren’t very aggressive. Anyway, I’m not sure what NIPT means…sorry! The only way you can find out if your baby has the kell antigen is to do an amniocentesis around 16 weeks. There is a maternal blood test in Europe that lets you know if your baby has the kell antigen but you have to be further along (maybe around 20 weeks, I think?) and it’s not as reliable as the amnio.
yes! that’s the thought is she was kell negative. now what are the hopes that this one will be, too! we’re praying.
NIPT {non-invasive prenatal testing} is just what you mentioned they were doing in Europe.. i was hoping it had become more common, and more reliable, since she was born in august of 2013. we choose not to have an amino last time, and do the MCAs..
Some people here in the states and in Canada send their blood to Europe to have the maternal test done. You could do MCA scans and then send your blood off for the test around 20 weeks. I don’t think insurance will pay for it but if I remember correctly it is about $300 so not TOO expensive. What is your titer?
my titer at 10.5 weeks was 1/32.. i cannot remember my titer with my prior pregnancy. i will totally pay for the blood to be sent to europe, but wish it was able to be done a lite earlier.. we have a 16 day trip to florida planned in november, and i wish i was able to know his/her kell status by then. obviously this pregnancy was slightly unplanned.
just curious, are you on instagram?
hi! we chatted last week – just wondering your thoughts on my titer.. and if titers play THAT big of part in the severity of the potential for anemia {if he/she is positive}? i’m a pediatric nurse, so a lot of this makes so much sense to me, it’s just so nice to have found another knowledgeable mama to talk about it with. my consultation is on thursday morning, and i’m equipped with a list of questions. even though my third pregnancy returned a positive anti-k screen, this time it feels different. maybe you could try to answer me this – IF our baby is positive for the kell antigen, does that automatically mean he/she will become anemic? like there is absolutely NO chance of them “holding their own” {for lack of better terminology} throughout the majority of this pregnancy? is it possible if he/she is affected, that my antibodies may not attack with such severity until much later/closer to my due date in march?
oh, and i must tell you that i read your blog in its entirety, and you are an astounding woman! good for you! xoxo 🙂
Sorry for the delay…Nora and my boys keep me busy! Titers are very unpredictable but anything over 8 should be taken very seriously. If your baby is kell positive, it doesn’t necessarily mean your baby will become anemic. I think it just depends on your body and your baby. There is definitely a chance your baby could hold out and not be affected until late in the pregnancy (or not affected at all.) Just make sure you’re having regular monitoring (weekly MCA scans starting at or before 18 weeks.) Good luck tomorrow! Also, I am on Instagram @bethanyweathersby (so original, I know)
Thank you for sharing this information, I am currently in the process of trying contact Dr. Moise myself, while my MFM’s are trying as well. We lost our daughter in December of last year to KELL and found out that we are expecting again. I am desperately trying to find something that they can do other than monitoring the baby until it shows signs of anemia. When you contacted Dr. Moise, did he email you back directly? Luckily my MFM’s are willing to try it, they just want the exact protocol to go by. I am 10 weeks today, so it makes me very nervous the closer we get to 12 weeks.
Hey Stephanie,
I am so sorry that you lost your baby girl last year. It is the worst pain. Congrats on your rainbow baby on the way. I think there is a lot of hope for this baby but you definitely will have to be proactive (like you are doing already) about the treatment. Come find me on Facebook (Bethany Weathersby) so I can connect you to the ISO group of moms who have been through this. They will walk you through every step along the way and answer any questions you have. And you are right to want to do more than sit around and wait for the baby to become anemic. The plasmapheresis and IVIG works to prevent the anemia before it starts, which is so much better for baby. You should email Dr. Moise today and he will probably email you back directly as soon as he can. I’m glad your MFMs are on board and open to the new treatment. I think it can save your baby’s life like it did for Nora and many other babies. You definitely need to decide on a treatment plan soon, though, since you are already 10 weeks. Good luck! I’ll be praying for your baby. Let me know if you have any other questions!
I just found out yesterday that my blood work came back showing a high level and dr. Told me I have Kell anybodies, he took blood again to recheck and said he was going to refer me to a specialist. I have since learned what it all means by looking it up on the internet. But he didnt tell me or explain much of anything and im 17wks almost 18wks. They still haven’t called me back with specialist info. I called and left a message but they have not gotten back to me. Im very concerned because im just finding all this out and im already almost 18wks. Am I over reacting or shouldnt they be kind of rushing things to see what is going on with the baby? Im still trying to figure out why they didn’t call me with test results instead of waiting an entire month to tell me at my appointment?
Hey Carla, you are definitely not overreacting. Your baby’s life could be on the line. What was your titer exactly? Have you ever had a blood transfusion? Do you know if the baby’s father is positive for the kell antigen? Come find me on Facebook as soon as possible (Bethany Weathersby) and I will add you to the ISO Moms group. You can ask them if they know of any good Meternal Fetal Medicine specialists in your area. You need to keep calling and if you can’t get in touch with anyone, literally show up at the office tomorrow and ask to be seen. You need an MCA scan by 18 weeks at the very latest. I had my first one at 17 weeks (and a few days) with Lucy and it was too late to save her.
just another perspective – i have four children, three of which i was kell positive {bled during my first pregnancy}. happy to report that all three pregnancies were monitored weekly with MCA dopplers, and all remained healthy throughout! no interventions were necessary and i’m holding my newest nine week hold!
That is awesome! And it is very important to hear hopeful stories like yours. In fact, your story is much more common than mine. Most of these babies do great and end up being perfectly healthy. The problem is that many MFMs are not up to date on the correct protocols and do not know how to properly manage these types of pregnancies. Almost every time a baby dies from these antibodies (including my Lucy) it is because the doctors don’t know how to monitor the baby, they are too optimistic/dismissive, they have out of date information and antiquated protocols or they don’t know all of the treatment options available. The fact that Carla is almost 18 weeks with a high anti-kell titer and doesn’t even have an appointment with an MFM set up tells me that her doctors are not taking this seriously enough. They are putting her baby at risk by waiting to start monitoring. Anyway, I keep wanting to do a series of blog posts sharing different stories like yours and mine to give a wide perspective of how these pregnancies can play out and how each one was treated. If you don’t mind me asking, what was your titer, was the babies’ father positive for the kell antigen and when did your doctors start weekly MCA scans with you? Thanks for sharing your story!
Pingback: Anti-Kell Antibodies: The worst mistake you can make. | Losing Lucy and Finding Hope
Thank you, I also lost 3 babies due to high immunization, but now I am in contact with dr. Moise and I really hope for the best 🙂
I’m so sorry for your losses😥 Dr Moise is the best and has helped bring so many rainbow babies into the world, especially in “hopeless” situations like my baby Nora’s. I hope the plasmapheresis/IVIG works well for you like it has for me and many other women!
Hello, I am still waiting for the pregnamcy, but by the way,maybe you could describe me how much costs ivig amd plasmaheresis?
I lost a baby girl at 24 weeks in 2015 due to anti-kell. I am now 8 weeks pregnant and had my 2nd ivig transfusion today and i have a consultation with a hematolgist next week. I am lucky in that my maternal fetal team is amazing and has consulted with Dr. Moises. While the outcome of this pregnancy is not guaranteed and i cannot get my hopes up, i do know that i am doing everything possible for a successful outcome.
Katie, I am so sorry for your loss but I am really glad you have proactive MFMs who are giving you the best care. That is amazing! I have seen many women have success with the IVIG so hopefully you will too! Some women even are able to avoid needing IUTs completely because the IVIG keeps baby safe from the antibodies. Are you part of our ISO Moms Facebook group? If not, you should join. There are many women in the group who have lost babies and gone on to have healthy rainbow babies
Hi, I’m new to all of this and am so thankful I found this page! I found out at 8 weeks that I have anti-Kell anitbodies. I have a wonderful, proactive mid-wife who immediately referred me to my MFM who also seems very on top of things. I’m 18 weeks and am about to go in for my second MCA. The first came back normal, but on the high end. We’re also waiting on lab results that tested my husband to see if he is homozygous or heterozygous for anti-Kell (Not sure if I phrased that correctly. It’s been ten years since I’ve sat biology class, haha!) Anyway, we’re continuing MCAs until we have clear answer on whether my baby is Kell positive or not. Anywho, I’ve tried finding the Facebook group ISO moms with no luck! Can anyone add me to it, please? Thanks for taking the time to read my story!
I also forgot to mention that I’m very close to Houston and there was y’all from my MFM and midwife of sending me there if I my baby is Kell positive. It such a relief knowing that I am so close to Dr. Moise!
I’m so glad you are being well taken care of! My advice is to ask for exact numbers at every scan and write them down. It’s always better to have the numbers rather than the doctor’s interpretation of the numbers, since many MFMs don’t deal with this disorder often. You can ask for the PSV or the MoM. It’s helpful to have all of the numbers written down in one place so you can spot an upward trend if it starts forming. And that is SO awesome that you can have Dr Moise if baby needs a transfusion. He is the best. I can add you to the ISO Moms group on Facebook. It’s a secret group (for member privacy) so it’s not searchable by non-members. If you send me a friend request (Bethany Weathersby) and a private message, I can add you. The women in the group are amazing!
Hi there – you provide so much wonderful information, thank you! I am meeting with my MFM for the first time next week, I will be 13 weeks. For the IVIG and Plasmapheresis, could this be done after first trimester? Or only used in the first trimester? I want to bring this up. This is my first affected pregnancy and I have high titre 1:256 and still don’t know if the baby is kell negative or positive. Going to do an amnio at 16 weeks and hopefully get my first MCA scan then. Any information you can give would be helpful. Thanks so much!!
It can be done at any time, although it helps the most if it’s done early. I think it’s usually used when doctors don’t think the baby will make it far enough along to do an IUT, so the purpose is to get baby to IUT gestational age. Anyway, my advice to you is to take in all the information about the noninvasive maternal blood test to your MFM and have that test done at 14 weeks to find out baby’s antigen status. They usually have the results back within about a week so you can know earlier than the amnio and it’s safer than the amnio. Also start mca scans at 16 weeks. I’m guessing your mfm won’t be on board with plasmapheresis and IVIG with a titer of 256 and no previous loss but it’s definitely worth a try! IVIG alone is also helpful if they feel uneasy about the plasmapheresis. If baby has elevated scans early then definitely push for IVIG (it can reverse anemia and even hydrops sometimes) But hopefully your baby won’t be severely affected and won’t need any of this!
Thank you so much for the advice. This is super helpful!