Antibodies: Anti-K
On January 22, 2024, I was seen for my first prenatal visit for my 3rd pregnancy. I have a healthy 4- and 7-year-old and had no issues during my first two pregnancies. On Jan 24, 2024, I was notified by my women’s healthcare provider that I tested positive for AntiKell Antibodies. I was referred to a high-risk maternal fetal medicine doctor and attended my first appt. with them on 2/8/24. I had an ultrasound and I was told my baby was healthy.

The Dr. told me I could only have AntiKell antibodies from a prior blood transfusion or being exposed to the antigen through a prior Kell antigen positive baby. Knowing I had never had a blood transfusion I was fearing the worst that my children’s father was positive for the Kell Antigen. The Dr. had me do another blood draw to determine my antibodies/titers and told me he would follow up with me after the results.

I was called on 2/9/24 and informed that I tested positive for Antikell Antibodies again and had a high titer level of 1,024. I was told my fiancée and father of my two older children needed to get a Kell Antigen test ASAP. I was told if my fiancée tested negative then there would be no further risk to my baby.

On Friday 2/9/24 my fiancée went to have his Kell antigen testing done. We learned later that evening that he had tested negative for the Kell Antigen.

On Monday 2/12/24 I called my women’s healthcare provider who had ordered the Kell antigen testing for my fiancée just to verify 100% that they had given him the Kell Antigen testing and it was definitely negative. I was told by a nurse that the Dr. had reviewed the test and that my fiancée was Kell ANTIGEN negative. I relayed this information to the Dr. at maternal fetal medicine and was told by the Dr. that my baby was not at risk since my fiancée was negative for the antigen. The Dr. at maternal fetal medicine asked me to have women’s health send my fiancée’s results which I requested. I asked the Dr. why I may have these antibodies and if they could have come from a virus or something because I have only had 1 partner in the past 12 years and never had blood transfusion. He told me he would look into it.

On 2/22/24 I reached out to the Dr. at maternal fetal medicine to inquire if he had found anything else out about why I may have the AntiKell antibodies, he asked me if I was certain that my fiancée was in fact the father of my baby. Of course I was absolutely certain about who my baby’s father was. The Dr. then advised me that he still had yet to obtain my fiancée’s lab results from my women’s health care Dr. I called women’s health again and asked that they send the information. Later in the day on 2/22/24 the Dr. at maternal fetal medicine called to inform me that he received my fiancée’s lab results and the women’s health Dr. had actually not tested for the Kell Antigen status as they were directed to. They tested my fiancée for Kell Antibodies which was not the correct test.

I was horrified and shocked at the negligence of my women’s health provider. On 2/12/24 after being told my fiancée was negative for the antigen of Kell, I told my two young children 4 and 7 that they were going to be having a little brother. I had been told there was no risk to my baby and assured that after women’s health had tested my fiancée and I had confirmed they had tested him for the Kell Antigen.

On 2/22/24 when we learned of the error of my fiancée’s blood work, he returned to the lab and was redrawn this time for the correct test the Kell ANTIGEN test. On 2/26/24 I was notified that my fiancée was in fact Kell Positive for the Antigen. I was aware now that the baby was still at grave risk depending on the baby’s antigen status. The Dr. told me that he would seek permission from NYS to order the billion to one unity test to determine my baby’s antigen status. I was scheduled for a fetal doppler ultrasound on 3/5/24 with maternal fetal medicine. I asked the Dr. at maternal fetal medicine about starting IVIG and Plasmophoresis treatments ASAP, but the Dr. told me that typically those were for women who had a prior kell alloimmunization in pregnancy in the past and that it was also very expensive. I told the Dr. my research indicated it was also permitted for women with a high Antikell antibody titer over 1,000. He said he would see what fetal doppler showed on 3/5. As you can imagine the cost of treatments didn’t matter to me, keeping my precious baby alive was my main concern. I have health insurance and I would have done whatever it took no matter the cost to fight for my baby.

I went to women’s health on 2/28 after feeling unwell and almost passing out. At this appt. I learned my baby had an abnormally low heart rate of 110 (should have been 130/140) and had fluid under the skin, in the abdomen, and in the lungs indicating the start of fetal hydrops/baby was already anemic(clearly indicating that the baby was Kell Antigen positive) and in grave risk. I was scheduled to see maternal fetal medicine on 2/29/24 at 8am. I arrived for my ultrasound on 2/29/24 and learned my baby boy was no longer alive. My baby died of HDFN/fetal hydrops/severe anemia due to my antiKell antibodies.

I have done extensive research on AntiKell antibodies in pregnancy and am aware that had my fiancé been given the correct test and we received the correct information back on 2/12 when I was only 13 weeks pregnant, I could have advocated to start the IVIG and plasmapheresis treatments which could have delayed the fetal anemia and possibly saved my baby’s life. From the research I have done I am aware that I could not get an intrauterine transfusion for my baby until at the earliest 16 weeks. I am aware the baby was too young for the transfusion, he passed away at just 2 days shy of 16 weeks.

I don’t know if my son would have survived had I gotten the correct test result on 2/9 but I know I would have tried my hardest to try the other alternatives to try to save my baby’s life. In all of the research that I have done if the mother has a high titer of over 1,000 and the father is kell antigen positive that is sufficient for allowing the mom to start IVIG and plasmapheresis.

The Dr. I met with who told me my baby was deceased said that although there was incorrect information/test results relayed to me about my baby’s risk/status that the plasmapheresis and IVIG are considered experimental and may or may not have worked. I have followed Bethany Weathersby’s story and found the Allo Foundation and have learned about what my options could have been had I been given the correct information from women’s health.

As you can imagine the emotional harm the wrong test result caused on not only myself and my fiancée losing our baby but telling my 2 young children who had their hopes up for a baby brother, it has been extremely emotional and devastating. I wanted to share my story so that other moms can know that they are not alone out there, fighting for their baby and being the biggest advocate for your baby. I hope that the other mom’s out there dealing with this disease can get the help sooner and have a better outcome than my story. Having no idea about this disease and trying to navigate it without medical providers that truly understand the disease it’s difficult. I find myself second guessing and wishing every day that something could have been different, that I could have done more, and wishing that my store could have resulted in a happy ending.

Bethany’s story of going on to have 3 healthy babies gave me hope even when I was struggling that there was hope for my baby. I don’t want other moms to think that there is no hope with this disease but please hurry to get the help before it’s too late!

I would love to help and be an advocate and assist in any way in giving back to try to help someone else. I often felt alone and helpless in this process of trying to navigate my pregnancy with Antikell antibodies. I’m currently trying to struggle through the grief of losing a baby and it’s a daily struggle. But I am here to advocate, support, and if I can be a resource and assist in any way in the future to help this foundation help other mothers and babies out there please feel free to reach out to me.

How can health care providers help?

When you have a mother that tests positive for Anti Kell antibodies immediately refer them to maternal fetal medicine specialists who are knowledgeable. I couldn’t even get my women’s health Dr. to order a correct blood antigen test for my fiancée when being directed by a doctor at maternal fetal medicine to order the antigen test and then was lied to about the result. Don’t discourage a mom to start IVIG and plasmapheresis just because she hasn’t had Kell alloimmunization in a prior pregnancy. Don’t let a mom with this high risk of a situation go weeks without an ultrasound or MCA doppler because it may be too late by the time you get them in. Don’t let these mothers wait until week 16 before there is any help because it may be too late for their baby.

How can scientists help?

 Please do something for the moms out there that have Anti Kell antibodies. Don’t make these moms wait until week 16 for their first transfusion to help with the anemia because it may be too late for that baby. I read something on a Dr. and a new clinical trial for a new weekly infusion that can help with this disease and I’m praying for the other mother’s that this will be a lifesaving drug that can help these women and their babies.

What would you tell other parents? 
I would say transfer immediately to maternal fetal medicine and don’t look back. Advocate to get the antigen testing on your partner done asap, ask for the billion to one unity test ASAP to determine your baby’s antigen status. Demand to be seen, demand to get ultrasounds and fetal dopplers ASAP. If your partner has the antigen and you have a high titer EVEN if you have never had a prior alloimmunized pregnancy, advocate to start the IVIG and plasmapheresis because if you don’t it may be too late by week 16 when a transfusion could be done.