Disclaimer: I am not a medical professional. This is what I have learned about this complication over the past few years through my experiences, through the wisdom others have shared with me and through my research.
I still remember hearing the words, “There’s a problem with your blood work.” It was my first ultrasound and first OB appointment with my third child. I was nine weeks along. I had had no complications with my first two pregnancies so I was not prepared to hear those words. We had just seen baby Lucy on the ultrasound for the first time and everything looked perfect so I thought we were in the clear. I couldn’t really understand how my first trimester blood test results (taken at six weeks) could possibly cause any problems for the baby. The expression on my OB’s face made my heart sink, though. He sat down and tried his best to explain anti-Kell antibodies to me but I didn’t understand everything he told me. He had been in the field for almost thirty years and I was his first patient with anti-Kell antibodies.
It is so scary to suddenly be told that your pregnancy is “high risk” and your baby might be in danger. Most parents who are faced with this reality go home in shock and have to make the big decision that is weighing on their minds, “Do I dare Google it? Or do I protect myself from unnecessary worry and avoid the computer and trust my doctors to handle it?” Most well meaning family members and friends encourage the terrified parents NOT to Google it. I had to look it up on my computer as soon as I got home because I honestly had no idea what my OB was talking about. I wanted to know what I needed to do to protect my child and I was desperate for some idea of what the rest of my pregnancy would look like. Unfortunately there was hardly any information available so I felt lost.
I have learned so much since that day four years ago. I have heard countless stories and watched many pregnancies play out and I have noticed a trend. There is one mistake many women make during an alloimmunized pregnancy. I made this mistake with Lucy, unfortunately, and it is the main reason she is not here with me today. Because of what happened with Lucy, I knew not to make this mistake again when I got pregnant with Nora and now she is a happy, healthy one year old.
So, what is the biggest mistake most people make once they discover that they are sensitized and have anti-Kell antibodies (or other red cell antibodies) during pregnancy?
BLINDLY TRUSTING YOUR DOCTOR
I want to be clear before going any further, that I admire and respect doctors so much. I have always been amazed at their courage and confidence in the midst of dangerous, stressful situations. Often one small mistake can mean the difference between life and death. I don’t think I could ever do what they do on a daily basis. But, there has to be a balance. We are trained in our culture to trust our doctors and almost view them as gods. We are taught not to question them. The truth is, they are human, just like us. Alloimmunization/HDFN during pregnancy is a very rare condition and most doctors and even maternal fetal medicine specialists do not see many cases on a regular basis. This does not mean that they are bad doctors, it just means that they don’t have much experience treating this condition. The treatments and protocols for alloimmunized pregnancies are constantly evolving and improving and many of them are fairly new. This means that many of the protocols in place around the world today are not up to date.
There is one hospital in my state (Alabama) that treats pregnant women with anti-Kell antibodies. OBGYN’s across the state refer their patients to this hospital if their patient’s first trimester antibody screen comes back positive. When I was pregnant with Lucy they told me that they don’t start MCA scans until 20-22 weeks at the earliest. At my first appointment I remember sitting in the exam room waiting for the MFM (maternal fetal medicine specialist) to come in and introduce himself. Before he came in I heard him take my chart off the door and flip through it. “Anti-Kell antibodies… What’s the critical titer for anti-Kell?” No one answered him, so he asked down the hallway, “Does anybody know the critical titer for anti-Kell?” I had done a little research online and I knew it was eight. “It’s eight,” I thought. After several doctors discussed it they decided it was eight and then he entered the room and introduced himself. I felt very uneasy. Why didn’t he know the most basic fact about this condition? Why did I know it and he didn’t? He was supposed to be the one who was going to educate me on the condition and he was supposed to be the one who was going to protect my baby. He was the “expert” though, and the one with the medical degree so I trusted him with my baby’s life. He told me that my baby would probably be safe since it was my first sensitized pregnancy. Even though my titer was very high (1,024) they said the baby would probably be fine. I asked if there was a way to protect the baby from the antibodies but they said there wasn’t and that she would be ok. I had researched and found some information about plasmapheresis and IVIG so I asked the MFM if we could try it. They said it wouldn’t work, it was just experimental and I couldn’t and didn’t need to try it. The insurance wouldn’t cover it anyway unless I had lost a baby already. I let it go and trusted the doctor. (I found out later that my insurance would have covered the treatments for Lucy.)
We had many people tell us how blessed we were to be going to the best hospital in the state. We were told they were the experts and were very qualified MFMs. Looking back, I see now that the protocols and treatment options at this hospital for alloimmunized pregnancies are out of date and desperately need to be updated and changed. Waiting until 20-22 weeks to start MCA scans with a critical titer (especially one in the thousands) is extremely dangerous and reckless. I had seen online that most women had their first MCA scan by 18 weeks, some as early as 15 or 16 weeks. When I brought that up to my MFM he said they didn’t do them that early because even if the baby was anemic, there was nothing they could do for the baby that early. They told me IUTs (intrauterine blood transfusions) can’t be done until 20-24 weeks at the earliest. Again, I had read several accounts online of women having successful IUTs as early as 16, 17 and 18 weeks. But that instinct to trust the doctor and not to question or doubt their expertise remained in me and I felt very uncomfortable. I didn’t know what to do.
Many women find themselves in a similar situation. I get questions all the time like, “I have a very qualified MFM but he says I don’t need weekly MCA scans, even though my titer is critical. I don’t know what to do.” Or “My MCA scan was 1.56 but the doctor said he wants to wait a week and recheck next Tuesday. Should I ask to be seen sooner? He insisted that it would be ok to wait a week.” Or “My MFM is doing monthly titer checks and will start MCA scans when my titer hits 32. You are saying the critical titer for anti-Kell is eight but my doctor disagrees.” I’ve even heard extremely confused doctors give advice such as, “Don’t worry, these antibodies can’t cross the placenta, so your baby is safe and doesn’t need to be monitored.” Or, on the opposite end of the confusion spectrum, “Since you have anti-Kell antibodies you can’t have any more babies because it’s too dangerous…the fact that you were sensitized by a blood transfusion and your husband is Kell antigen negative is irrelevant.” Almost every time I hear a story about a woman losing her baby to this disorder it is because the proper treatment or monitoring was not performed.
I am not saying that you shouldn’t ever trust your doctor or MFM but YOU have as much authority as the doctor does when it comes to treatment plans and monitoring for your baby. You have to work together with the doctor to make sure your baby gets the best treatment possible. It should be a partnership between you and your MFM, a partnership in which you feel comfortable asking questions if there is concern about the treatment plan and one in which decisions are made together by you and the MFM. Ideally all of healthcare should be a partnership and patient education and involvement should be encouraged. If the doctor does not invite you to be part of the decision making process, insert yourself into the discussion. You will have to work hard and fight for your baby. Do your research (you can find lots of great resources here www.allohopefoundation.org), join the Antibodies in Pregnancy Facebook group (you can find me on Facebook- Bethany Weathersby), make sure you understand alloimmunization/HDFN and how it affects your baby, write information down in a notebook, print off important facts and studies, and bring it all with you to your first appointment with your MFM. Never be ok with vague test results like, “You have a high titer” or “The MCA scan shows that the baby’s anemia is in the safe zone.” You cannot let the MFM make those calls since their information and protocols might be out of date. Ask for your exact titer and at every MCA scan ask for the PSV results or the MoM number and always write it down. Then YOU decide if your titer is critical or if the MoM is in the safe zone. If you are having an IUT, ask for the beginning and ending hematocrit at the start and the end of the procedure. Obviously there are tests that you cannot interpret because you are not a professional (like certain ultrasounds) but when it comes to numbers and blood levels there are exact numbers to look for or be wary of. If you aren’t sure, you can learn more about those numbers here . Be respectful and listen to the MFM but make sure that the treatments or lack of treatments he suggests match up with the information you have. Don’t be afraid to speak up if you have questions or if the MFM says something you disagree with. I know it is hard to make a suggestion to the expert or to doubt something he says, but you have to do what it takes to protect your baby. If your baby dies, they probably won’t remember your child’s name months, weeks, or even days later, but you will be broken for the rest of your life. You are one of many patients they see on a regular basis, but this is your one and only baby who can never be replaced. The mama bear instinct that was born in you the day you found out you would be a mother was placed in you for such a time as this. Harness that power and that primal need to protect your baby. Who cares if the MFM thinks you are pushy or annoying? Your baby is depending on you. Never be afraid to speak up.
After Lucy died and I got pregnant with Nora I went back to the same MFMs that treated Lucy since they are the only ones in the whole state. I had Dr. Moise’s study on plasmapheresis and IVIG printed off and I had come up with a treatment plan that I was confident about. I listened to their treatment plan first, which was, “Well, you have a 50/50 chance of having a Kell positive baby. Let’s hope the baby is negative. We want to see you back at 16 weeks for a check up.” If I had gone with their plan, Nora would be dead. I explained that I did not feel comfortable with their plan for my baby and I wanted to try Dr. Moise’s treatments instead. They were not excited about my suggestions. There were deep sighs and smirks at the corner of the mouth. I hated being the pushy one, the annoying one, the one they would all talk about later, but Lucy had lit a fire inside me that enabled me to fight with every fiber of my being for this new baby of mine. I don’t want you to have to lose a baby first before you learn that you HAVE TO FIGHT for your baby’s life. I want to light that fire in you now. Your baby deserves the best chance of life possible and your baby deserves a mama who is willing to look stupid or be annoying to save his or her life. Your child’s life is worth it. You can do this.
So, when my MFMs were less than thrilled about my treatment suggestions I told them if they were not ok with it, that was fine, I would leave the state and find a doctor who would do it. I gave them Dr. Moise’s contact information and the study I had printed off. They said they needed time to think about it. One MFM said he would be willing to do the IVIG portion of the treatment plan, but not the plasmapheresis for some reason. Thankfully I had my first appointment with them at six weeks since we knew my antibodies were so severe, so I had time to let them discuss it and make a decision. The MFM contacted Dr. Moise to discuss the treatment and agreed to start plasmapheresis and IVIG at 11 weeks to prevent Nora from becoming anemic. The MFMs and nurses did put a lot of work into setting these treatments up and getting my insurance to cover it. I am so thankful that the MFM contacted Dr. Moise and decided to try something new because it saved my child’s life.
There have been times when I disagreed with an MFM on something, but I had to be the one to back down. It is a delicate balance, knowing when to fight and when to trust. With Nora, I desperately wanted to double my IVIG because her first MCA scans (15 and 16 weeks) were around 1.3-1.4 (some between 1.4-1.5) so I thought she was getting anemic already. My MFM said that he wouldn’t do it. I fought and pushed and pestered him, but he really didn’t feel comfortable with it. I thought it was a death sentence for my baby but after he contacted Dr. Moise and his decision was backed by the expert, I had to relent. It was HARD to let go and trust them, but I did and they were right. The IVIG did not need to be doubled. After I moved to Houston at 18 weeks and Dr. Moise took over my care, I was terrified because he only wanted to do one MCA scan per week. In Alabama they had been doing two per week. I told him it made me uncomfortable to wait a whole week between scans but he insisted that the baby would be fine until the next scan. I wasn’t sure if I should fight for more scans or trust him. I had to purposefully think through my emotions; I was so anxious about my baby that I was trying to be in control to feel safer. I considered my MFM, Dr. Moise, and acknowledged that there were no red flags so I could trust him. When I told him how nervous I was with his decision to scan only once per week he didn’t brush my concerns off. He listened and then he showed me specific things on the ultrasound that assured him Nora wasn’t anemic or in distress (her heart was not dilated at all, there were no signs of fluid building up in any of her organs, her bowels looked normal, my amniotic fluid levels were normal, her heart rate was good and she was active, the MoM was under 1.5.) I felt better after he pointed out exactly why he was ok waiting a week to rescan. I submitted and agreed to scan once a week and he was right. My baby Nora was fine. So, fight for the basics, speak up and trust your instincts, ask lots of questions and remember that sometimes you have to be the one to back down, as long as the MFM is trustworthy, doesn’t have any red flags and is following the basic treatment protocols.
There are certain red flags you can look for when you first meet your MFM. If you see several red flags, look for a new MFM as soon as possible, even if it means you have to travel several hours to find the right one. We had to travel eleven hours away and relocate for five months to find the right MFM for us and it was completely worth it. You wouldn’t hire a babysitter that you didn’t know and weren’t sure about so be assertive about who you are trusting with your baby’s life.
Red Flags to Watch For:
- The information given by the MFM does not match up with the basics* listed at the bottom of this blog post.
- The MFM acts insulted and irritated when you ask questions or when you challenge something (s)he says.
- The MFM is too busy to listen to all of your concerns and answer all of your questions.
- The MFM is not willing to learn new information from sources you bring in or consult with other doctors at a different hospital.
- The MFM is only willing to do the minimum amount (or less) of monitoring required.
- Your MFM is not willing to let you be part of the decision making process and does not share specific test results with you.
Notice, none of the red flags refer to lack of experience with alloimmunized pregnancies. Even doctors who have rarely encountered this disorder can be wonderful MFMs as long as they are humble and willing to learn about it (except when it comes to the actual surgical procedures like IUTs and amnios. Only let very experienced MFMs perform those procedures on you.) Some of the most proactive MFMs I’ve read about are those who started off not knowing much about alloimmunized pregnancies or how to treat them. They did their research, contacted other doctors, asked questions, listened to their patients, referred their patients to more experienced MFMs when necessary and were willing to try new treatments to save the babies, and they did.
*Here is a reminder of the basics. If your MFM doesn’t agree with this information it might be best to get a second opinion.
- You need to know as soon as possible what your antibody titer is and you need to know what the critical titer is for your particular antibody. (Critical titers: anti-Kell:4, all other antibodies:16)
- Your baby can only be affected by your antibodies if (s)he is Kell antigen positive.
- The baby’s father should be tested for the Kell antigen (NOT the antibodies!) as soon as possible.
- If the baby’s father is negative for the Kell antigen, then the baby has a 0% chance of being Kell positive, which means the baby cannot be harmed by your antibodies.
- If the baby’s father is Kell positive, he needs to be phenotyped to see if he is homozygous or heterzygous for the Kell antigen.
- If the father is homozygous, the baby has a 100% chance of being Kell positive.
- If the father is heterozygous, the baby has a 50% chance of being Kell positive.
- You should have an appointment set up with an MFM.
- If your titer is below critical you need to have your titer checked regularly.
- Titers do not always predict how aggressive the antibodies are, but often, high titers mean the baby is in more danger.
- If your titer is 4 or above, MCA scans need to start between 16-18 weeks. No later than 18 weeks!
- If you have a titer in the hundreds or thousands, you should have your first MCA scan at 15-16 weeks. I had my first one with Lucy at the end of my 17th week and it was too late by then. I had my first MCA scan with Nora at 15 weeks and my first MCA scan with Callum at 14 weeks.
- Just because it is your first sensitized pregnancy, it doesn’t mean the baby won’t be affected. I lost my baby in my first sensitized pregnancy.
- You usually don’t HAVE to know whether the baby is Kell positive or negative. The doctors can monitor baby as if (s)he is positive since the methods used to monitor are safe and non-invasive.
- If your titer is critical, you should have MCA scans every week. Fetal anemia can develop very quickly so waiting over one week to do an MCA scan is putting your baby at risk.
- When the doctors do the MCA scans, they also need to check for other signs of anemia or distress in the baby (dilated heart, echogenic bowels, ascites/fluid starting to collect in the organs, excess amniotic fluid, signs of distress, etc.)
- If the MCA scans are showing an upward trend or are getting close to 1.5, the MCA scans can be done twice a week.
- When your MoM gets to 1.5 or over you need to have an IUT (intrauterine blood transfusion.)
- The IUT needs to be performed by someone who has had experience performing the procedure.
- If you have already lost a baby to these antibodies or a previous baby was seriously affected or you have a titer in the thousands, plasmapheresis and IVIG should be considered. With a little work, most insurance companies WILL cover these treatments. Here is the study Dr. Moise did showing the efficacy of these treatments for severe isoimmunization/alloimmunization in pregnant women.
- If your baby becomes anemic very early in the pregnancy, an IUT can be performed by putting blood into the baby’s belly (IPT) instead of the umbilical cord (IVT.) You could also start IVIG treatments right away if there are signs of anemia very early in the pregnancy. I have seen severely anemic, hydropic babies at 16 weeks saved because the mother was started on IVIG right away. The anemia disappeared and the fetal hydrops resolved because of the IVIG.
- Babies should be checked by ultrasound the day after the IUT to make sure they aren’t in distress. My MFMs insisted that Lucy did not need to be rechecked for a whole week after her IUT (even though her beginning hematocrit was six, which is extremely low.) She was dying that entire week and by the time they scanned her again it was too late. Nora (my rainbow baby who survived) always had an ultrasound 24 hours after her IUT.
- In severe cases, IUTs can be performed only days after the first one if the baby needs it.
- After the baby is viable, many doctors recommend steroids to develop the baby’s lungs before an IUT is performed. If an MCA scan is done after the steroids have been administered, it usually will give a false low number. The MoM will be lowered but the baby will still be anemic. It’s best to only administer steroids once the MFM has decided to do the IUT.
- Here is information regarding after birth care for your baby . You can print this information off and ask if your MFM agrees with it, but often it is a neonatal team dealing with baby at that point and not so much the MFM so it might not be as relevant.
I would like to end this post by saying if you have lost a baby to these antibodies, I am so very sorry. If your baby died because (s)he did not get the right monitoring and treatment, the last thing I want you to feel is guilt. I know how hard that is, though. Lucy would probably be alive today if she had received the care Nora received and I have struggled a lot with guilt because of it. I know that when I was pregnant with Lucy, I did my very best to save my baby. I did everything I knew how to save her and I know that you did too. We honor our babies’ lives by using their stories to prevent other babies from going through the same thing. Our babies felt nothing but love from us their whole lives and we should hold our heads up proudly knowing that we did the best we could to save them at the time.
This blog post was written in loving memory of:
HUDSON JOSEPH HERDMAN
LUCY DAIR WEATHERSBY
EPHREM FABIAN MEYER
KRISTIAN MICHAEL PINEDA
JULIA MARIE GETTMAN
GRACE DAISY MARIE PUCHMEYER
GABRIEL ZACHARIAH LUCAS
ADALYNN FAITH LUCAS