Anti-Kell Antibodies: Get Those Numbers!

As with all of my anti-Kell posts, this one also applies to the other red cell antibodies during pregnancy; anti-D, anti-c, anti-E, anti-FYA, anti-Jka, and so on.

One of the best ways you can protect your baby is to find out exactly how your baby is doing, and one of the best ways to know how your baby is doing is to know exact test results (assuming your MFM is performing the right tests.) Most of the time, doctors do not automatically give out exact test results but give their interpretation of the results instead. “Your baby is doing fine” or “Your results are in the normal range” or “Baby’s numbers have increased a bit this week but we will just keep an eye on him and scan again next week.” With most conditions this is the norm; doctors interpreting the results into understandable, bite sized sentences that patients can grasp easily. But most conditions are more common and doctors encounter patients with those conditions on a regular basis. Our disorder is far more rare and MFMs encounter it less frequently than the other pregnancy complications they deal with. Your doctor might not be up to date with the best practices regarding monitoring and treatment for your baby; and yes, even at the best hospital in your state or the best hospital in your country. This is why it is so important to get your specific test results, even if you aren’t exactly sure what to be looking for at first. Numbers are concrete. You can find out specific information with your number in hand. You can use those numbers to help the doctors protect your child. But if you just have your doctor’s opinion, you can’t help advocate for your baby or make sure you are getting the correct treatment.

Sometimes it is awkward to ask for the exact number after your doctor has concluded, “Everything looks great!” or “The numbers are a bit elevated but baby should be ok for now.” Some doctors might take it as a challenge, an irritation in their busy day or as a simple question that they are happy to answer for you. Some doctors like it when their patients want to be educated and involved in their care decisions. Regardless of how your doctor responds to your inquiries, those are YOUR numbers. They belong to you and your baby and the medical professionals are required to give you what belongs to you if you want it. Don’t feel bad for asking. Think about when your baby is finally born and they put her on the scale and you anxiously wait to see how much your bundle of love weighs. Now imagine the nurse writing the number down on your chart and not mentioning it to you. You ask for baby’s weight and they say, “Oh, it’s in the normal range,” or “It’s a bit higher than average.” Would you be ok with that? No! You want to know how much your baby weighs! We expect to receive those numbers after baby is born, but sometimes we are willing to let these other, far more important numbers go. These numbers can determine whether your baby lives or dies, so GET YOUR NUMBERS and record them in some way (notebook or phone, etc.) Envision yourself standing in front of your baby ready to fight the antibodies that threaten your child. These numbers are the weapons in your hand, ready to defend and protect. Here is a list of the most important numbers you need to record during your ISO pregnancy:

Antibody Titer: Your antibody titer gives you an idea of the amount of antibodies present in your blood. The monitoring and treatment you receive is often based on your antibody titer, and these ultrasounds and treatments are very time sensitive (my daughter might be alive if we had done the scans and treatments in time.) As soon as you find out you’ve had a positive antibody screen ask your doctor for your antibody titer and write it down, or ask for access to your medical records so you can look for it yourself.

PSV or MoM Number: This is probably the very most important number you will get during your pregnancy because it shows if and to what extent your baby is being affected by your antibodies. This number is far more important than your titer even. At every MCA scan your doctor is looking at the PSV (peak systolic velocity) number and it will show on the screen when they are doing the scan. You can look on the screen and try to find it or ask for the number. You use the PSV number and your exact gestation to determine baby’s MoM (multiples of median) which shows if baby is anemic or not. An MoM of 1.5 or over shows that baby needs an intrauterine blood transfusion. I use this website to calculate my MoM https://medicinafetalbarcelona.org/calc/  Click on Anemia then click on Cerebral Doppler, then plug in your gestational age and your MCA PSV number and it will calculate your baby’s MoM. I kept a notebook with all of Lucy, Nora and Callum’s weekly PSV and MoM numbers so that we could compare them to each other and track the numbers to see if there was an upward trend starting (those often lead to IUTs.)

Beginning and Ending Hematocrit/Hemoglobin: These numbers are only important for the women who need IUTs. The beginning and ending numbers are important because they show how anemic baby is before and after the IUT. It always helped me during the IUT procedure to focus on the numbers, so the doctor would call out the hematocrit once they checked baby’s blood and I tried to remember the number instead of focusing too much on what was happening. The doctor called out the ending hematocrit once they got the blood to baby. If the doctor didn’t call out the numbers, I asked and it always made me feel better. If you prefer not to think about numbers during your IUT, just ask the MFM what the beginning and ending hematocrit/hemoglobin (some doctors prefer to use one or the other) was once you are in recovery for monitoring after the procedure. Knowing how anemic baby was before and after the IUT can help you answer all kinds of questions like- “Did my baby actually need an IUT?” “How long can my baby wait until the next IUT?” “Did my baby get enough/too much blood during the procedure?” “Was my baby anemic enough to cause future problems?”

*Side note- It is important to remember that the MoM does not always correlate with an exact hematocrit in baby, so the doctors can’t know EXACTLY when the best time to transfuse is. The MCA scan gives an idea of how anemic baby is and the 1.5 MoM cutoff is the best tool they have for knowing when to transfuse. Some babies will be more anemic with an MoM of 1.5 than other babies with the same MoM. To give you an idea of how my babies’ MoMs correlated with their hematocrits here are their beginning numbers for their first IUTs:

Lucy- MoM=2.5 Beginning hematocrit=6

Nora- MoM=1.6 Beginning hematocrit=26

Callum- MoM=1.48 Beginning hematocrit=28

Bilirubin: This number is very important after your baby is born. The type of jaundice our babies deal with is different from normal newborn jaundice. Our babies’ bilirubin usually peaks between days 4-6 so make sure they continue checking bilirubin until baby is past the peak days. Hemolytic jaundice often has to be treated more aggressively than normal newborn jaundice so you have to make sure they are tracking baby’s bilirubin closely and treating it appropriately. It is very common for our babies to be discharged too early while bilirubin is in the “safe” zone but still rising and then the babies have to be brought back and readmitted with high bilirubin levels later. High bilirubin can sometimes cause permanent brain damage, but it is completely preventable so these numbers are very important. Also be sure to ask how old baby was at the time of the blood draw since that affects treatment levels. I think Callum’s bilirubin level at birth was 5, which would not be a big deal if he was a couple days old, but right at birth that is considered a high number. So get the bilirubin number and how many hours old baby was at the time of the blood draw. This is a good tool to use to find out if your baby’s bilirubin is high enough to need treatment: https://peditools.org/bili/ 

Hematocrit/Hemoglobin: These numbers are very important after baby is born. These numbers tell you if your baby is anemic and whether baby needs a blood transfusion or not. Transfusion levels vary depending on your specific circumstance so the ISO Moms Facebook group is a great place to ask questions about whether or not your baby might need a transfusion. You can also email me if you have questions about this. Of course, we cannot make medical decisions for you but we can share our insights and experiences and you can combine that information with your doctor’s suggestions. When Callum was in the NICU after his first post birth transfusion the doctors wanted to let him drop below a hematocrit of 25 before transfusing. That isn’t super low, but I felt uneasy about waiting too long to transfuse since he was dealing with so many other preemie issues on top of the anemia. He got to 26 and was having more oxygen desats and heart decels and wasn’t feeding as well as he had been. I had a suspicion that if we handled the anemia the other issues might improve as well. I spoke to his neonatologist about this and said that I felt strongly about going ahead with the transfusion. She heard me and agreed to let them transfuse even though he hadn’t dropped below 25. Callum improved so much after his blood transfusion. No more oxygen desats or heart decels, his feeding improved rapidly and he was discharged from the NICU two days later. Make sure that your baby’s hematocrit or hemoglobin is followed after discharge from the hospital. Delayed anemia is normal for our babies since our antibodies linger in their bloodstream and continue to destroy their red blood cells for weeks after birth. One of my friends lost her beautiful daughter because none of her doctors followed up with blood work after her healthy baby was discharged from the hospital. By the time they caught the delayed onset anemia weeks later, it was too late. Dr. Moise did not allow Nora to be discharged from the hospital after birth until we had an appointment set up with a pediatric hematologist the following week, even though her numbers were perfect and she wasn’t anemic at all at birth. With both Callum and Nora we had weekly blood draws to check hematocrit and hemoglobin and both babies needed transfusions a little over a month after birth.

Ferritin: Most of you will not have to worry about this number at all, but it can be very important if your doctor wants to give baby iron supplements after birth. If your baby had IUTs or was Coombs positive after birth, do not allow the doctors to give baby an iron supplement unless they have checked baby’s ferritin levels first. The ferritin levels show how much iron the body is storing. Doctors often mistakenly equate hemolytic anemia with iron deficiency anemia and want to treat babies with extra iron. When a baby is given a blood transfusion, in utero or after birth, they are given adult donor blood which has adult level iron content. This means our babies are usually overloaded with iron so adding more iron can be dangerous. Since our babies aren’t anemic from low iron (they are anemic because the antibodies have been destroying their red blood cells) adding more iron won’t help their anemia at all. When Callum was in the NICU, after four blood transfusions (3 in utero, 1 post birth) his neonatologist wanted to give him an iron supplement. I told him I would only allow it if they checked his ferritin levels first since he didn’t have iron deficiency anemia. They agreed to check his levels and they were 1,216! The normal range for a baby his age was 25-250. We had to consult a hematologist and do some liver function tests and even discussed possibly doing a liver biopsy to check for liver damage. I’m so glad we didn’t give him MORE iron, adding to his extremely high levels. So, if you have a Coombs positive baby (who might need a blood transfusion in the near future) or have a baby who has had a transfusion, only allow the doctors to give an iron supplement if they have checked the ferritin and baby has low levels.

Remember how useful these numbers can be in your fight to protect your baby from your antibodies. If you get your numbers and then realize that you aren’t sure what to do with them, feel free to email me with any questions you have, or come join our ISO Moms Facebook group for access to about a thousand other women who have been or are going through the same thing. It is a secret group so you won’t be able to search for it. Just send me a private message and I will get you added to the group!

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Reliving the NICU

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Last year at this time my newborn Callum was in the NICU and I was staying at the Ronald McDonald House with two year old Nora and my Mom (most of the time.) Since Callum’s first birthday I have been surprised and kind of annoyed by the waves of emotion I’ve been experiencing. The days he spent in the NICU replay vividly in my mind. That night when Josh had to drive Liam and Asher back to Tuscaloosa and I was left alone in the hospital recovering from my c-section and I hobbled down to the NICU at 2 am because I missed my baby so much. I couldn’t hold him yet, I couldn’t breastfeed him or have him in my room, but I COULD look at him, so when my thirst for him just could not wait another minute I walked all the way to the NICU without a wheelchair for the first time, alone. When I finally saw him the pride and goodness of my boy filled me up, but the nurse was visibly irritated by my presence. She side eyed me standing there next to his bassinet and I asked if he had taken anything by mouth. I had been waking up every three hours to pump and then getting up to wash all the pump parts and labeling the breast milk and sending it to the NICU, so I was proud of the breast milk that was available for him now. “Yeah, he had formula and did a pretty good job with the bottle.” “Oh, why wasn’t he given breast milk?” I asked. “I just reached in and grabbed whatever was there and it happened to be formula. He’s been crying for the past hour and I just got him to sleep. It’s not even feeding time so please don’t touch him. It’s not really time for you to be here.” she said. I was stunned into silence. Right after he was born my nurse had told me I could go down to the NICU and see my baby any time I wanted. But now, the one thing that brought me comfort, being able to physically be present with Callum and see him in the flesh, this nurse was taking it away from me? And he had been screaming for an entire hour without his Mommy. And the milk I had worked so hard to pump for him was left in the cooler. I didn’t say anything and stood there like a little kid who just got in trouble for coloring on the walls. Post pregnancy hormones coursed through me and I crumpled into tears and just sobbed, heaving and heaving. It was so embarrassing. Snot and tears trickled down my face and I stood rooted there, body aching from being on my feet for so long but I didn’t know what else to do. The nurse felt awkward and handed me a tissue. I wiped my face and hobbled out the door, down the hall, into the elevator back up to my hospital bed, crying the whole time. I know the nurse probably had a long day and was tired of taking care of somebody else’s screaming baby and wasn’t trying to hurt me, but I felt completely defeated. Now in hindsight I’m irritated with my self for not standing up to that nurse and explaining that if they had certain visiting hours for parents they should have told me, and please give him the breast milk I sent for him. Why do I even care? Callum is literally playing right in front of me right now and he is perfectly healthy and he’s with me ALL OF THE TIME. He has no recollection of that incident so why am I wasting my emotional energy on it right now?

I think having a baby in the NICU is hard for any mother but it’s even harder after you have lost a baby. It’s hard to be empty handed after giving birth, AGAIN. At the time I was in survival mode…pump, go visit Callum, drop off milk, breastfeed, go back to be with Nora, take care of Nora, eat, pump, head back to Callum, etc. (there was very little sleeping going on.) But now, in hindsight, I can make a bit more sense of how I felt. For some reason while Cal was in the NICU I felt like my parental rights were waived and the nurses were his parents, calling the shots. I had to be given permission to hold my own baby or to even be there by his side. I had to ask if I could touch him, feed him, hold him, change him. Most nurses were amazing and I was overcome with gratitude for these women who poured so much love into my baby. They even sent a card to our house after we got home with Callum congratulating us and thanking us for choosing them to care for Callum, which was so amazing. But my mind flits past that and settles on the one nurse who, after I had just met with a therapist about how to handle a preemie, broke all the “rules” I had just been taught and roughly picked up my baby, startling him into screams. She moved quickly and suddenly with him and was not gentle. He cried and I just watched because I wasn’t the parent in the NICU. But if my newborn had been in his little bassinet beside me in my hospital room recovering after the birth and a visitor handled my baby that way I would immediately take him out of her arms and not allow her to hold him anymore. The NICU was different, though, and I had to leave my son there all night with that nurse, and I felt sick leaving him there. I couldn’t sleep either because I worried about him. The next morning he was fine and I felt silly for my strong emotions and fears. But now these experiences replay in my head and I grieve again for the days I lost with Callum. I wonder if I should have been more assertive as his mother? Maybe I was too assertive? Since I felt like I wasn’t the parent, it was hard to bond with Callum like I should have in those early days and that is what grieves me the most, I think. I didn’t get to start truly bonding with him until he came home and I was his mother. People asked ME for permission to hold him and I had the choice not to leave him with anyone I felt uneasy about.

I remember how painful it was after Lucy died to hear women complain about how hard the NICU was. I equated the NICU with “live baby” and envied women who got to experience the NICU. In a way I felt like I was one of the lucky ones while Callum was in the NICU which gave me a weird sense that I was not allowed to grieve the losses I was experiencing. They were on such a smaller scale than the losses of the women who gave birth to still babies. But not grieving properly means the grief can fester and erupt later so now, one year later, I am grieving for the things I lost with Callum in his early days. Tomorrow will be one year since he was discharged from the NICU and I’m hoping this weight will lift and I can move on. I am so thankful to have him home now, healthy and thriving, and I revel in the fact that I get to be his Mommy, just me and no one else.

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