We finally have a treatment plan in place to try to save our baby. We worked on this for several weeks with our MFMs (high risk OBGYNs), with other women who have gone through the same thing and with the main expert in this field, Dr. Kenneth Moise from Houston, TX. We feel very confident about this treatment plan and we are so thankful that all of our doctors are on board since it’s kind of a new (some even say experimental) type of treatment.
Sorry if this is a repeat for some people but I just wanted to give you the basics on why our baby is in so much danger. After I gave birth to Asher I developed anti-kell antibodies which will attack blood that has the kell antigen in it (kell positive.) Josh is kell positive (not dangerous to him at all, just a blood type.) All of our children have a 50% chance of being kell positive like Josh or kell negative like me. If the baby is kell positive, my anti-kell antibodies will attack the baby’s blood, making him anemic and eventually possibly killing him. Babies start making their own blood some time at the beginning of the second trimester. Before the baby is making his own blood, there is nothing for my antibodies to attack, so the baby is not in danger. Right now I am nine weeks pregnant and the baby is safe because he isn’t making his own red blood cells yet. If the baby is kell negative, like me, my antibodies will have nothing to attack and it will be a normal pregnancy. Usually, the antibodies get stronger with each pregnancy. My antibodies are extremely aggressive so it is terrifying to think that they might be even stronger with this pregnancy than they were with Lucy.
The only way to know if the baby is kell negative or kell positive is to do an amniocentesis around 16 weeks. The amnio comes with a couple risks that we don’t feel very comfortable with. About 1 in 500 women who have an amniocentesis miscarry as a result of complications from the amnio. Also, some doctors think that doing the amnio could increase the aggression of the antibodies (sticking a long needle into the belly could mix blood and make the antibodies have a stronger reaction.) That would be really bad for us since my antibodies are so aggressive already. Josh and I are still trying to decide whether to have the amnio or not, but right now we do not feel good about adding even the slightest extra risk to this already extremely high risk pregnancy. The doctors can still monitor the baby closely with MCA scans (a special ultrasound to see if the baby is anemic or not.) Honestly, I think if the baby is kell positive we will find out pretty early because the anemia will probably show up on the scans, like Lucy’s did.
So, back to our treatment plan. Even though we don’t know if the baby is kell positive or negative, we will begin treatments at ten weeks and will assume the baby is kell positive. If we wait until we know for sure, it will be too late to start the treatments. On January 9th I will have a “permacath” or a “port” surgically placed (I think it’s going in my chest, but not sure yet.) On January 12th, 14th and 16th I will have three rounds of plasmapheresis done. The antibodies are found in my plasma, so these treatments will remove the plasma and the antibodies (until my body makes new ones.) The next week I will have my first round of IVIG (intravenous immunoglobulin.) I’m still kind of confused about how all of this works, but supposedly the IVIG blocks my antibodies’ ability to attack the baby. I will have weekly IVIG treatments until I’m at least 20 weeks along (hoping I make it that far.) We will start MCA scans to check for anemia at 16 weeks (although I’m still kind of pushing the doctors to start at 15 weeks.) If the baby starts getting anemic, the doctors will have to do an IUT (intrauterine blood transfusion) on the baby. If the baby needs one before 20 weeks, I will be sent to either Cincinnati, Ohio or Houston, Texas to a hospital that is better equipped and more experienced with IUTs on babies so tiny. The smaller the baby, the harder it is to stick a needle into their tiny veins and get fresh blood to them. My doctors here in Alabama feel confident about doing an IUT after 20 weeks because the baby is bigger. They tried one on Lucy at 18 weeks and she died a week later.
If the baby is showing no signs of anemia, we might consider doing the amnio to make sure baby is kell negative. If he is, we will stop all treatments and I can enjoy the rest of the pregnancy. If we still feel nervous about doing the amnio, we will just taper off the treatments and monitor the baby very closely to make sure he isn’t getting anemic. If the baby is kell positive, we will stop the plasmapheresis and IVIG treatments sometime between 20-24 weeks and just treat the baby’s anemia with blood transfusions. Right now, I will be thrilled if this baby can just make it to 20 weeks so that he can get blood transfusions to save his life. I will be over the moon if this baby makes it to 26 weeks so that he can have a chance at life outside of the womb.
I think those are all of the basics. We are trying our best to stay hopeful about this baby and to trust God again. At times I feel like I am having dejavu, this feels so similar to how things were when I was pregnant with Lucy and then before I knew it, she was dead. We were told Lucy had an 80% chance of surviving the pregnancy. This baby has been given a 50% chance. God is not controlled by percentages, though, and just because that happened with Lucy, it does not mean the same thing will happen with this baby. I heard a verse in church a few weeks ago and I felt like it was for me. It filled me with hope.
Isaiah 43:19 Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.
This baby is a new creation, a miracle in the making. This pregnancy does not have to mirror my pregnancy with Lucy and the outcome is not doomed from the start. God is doing a NEW thing and we can trust in His unfailing goodness and love. We have done our best in coming up with a good treatment plan, now all we can do is pray and trust that the doctors will try their hardest to save our baby and that God will NOT let us down, no matter what happens.
You can also play a BIG part in our baby’s treatment plan. You can pray. Specifically, please pray:
- for the baby to have a good, strong heartbeat at the ten week ultrasound
- that the placement of the port will go smoothly and that it will not get infected while it is in
- that I will not get sick or have migraines (common side effects) while doing the treatments
- that the baby is kell negative
- that the treatments will work and the baby will live, even if he is kell positive
- that the doctors will have wisdom while treating the baby and me
- that our insurance will cover all of the treatments
- that Josh and I will be flooded with peace and will be able to trust God to take care of our baby
- that we will be able to love our boys well and still take care of them throughout the treatments and many doctor’s appointments, and that God will protect their hearts from more loss and tragedy
Thank you so much for sticking with us and praying for all of us. We couldn’t do it without you! We will keep you updated.
* UPDATE- We did end up having the amniocentesis at 15 weeks and found out Nora was kell positive. The amnio had no negative side effects and did not make the antibodies more aggressive. We also started MCA scans at 15 weeks instead of 16 weeks. At 18 weeks I moved to Houston, TX to be treated by Dr. Kenneth Moise. Nora didn’t need her first IUT until 24 weeks. We stopped the IVIG treatments and had my port removed at 24 weeks after the first IUT. She had 5 IUTs and was delivered at 37 weeks 6 days. She had 2 post birth transfusions and is now completely healthy. The treatment plan DID in fact save our baby ❤
Sounds like a solid plan! Praying good things for this pregnancy!
I’m so glad you have a concrete plan in place. I’m glad you were able to get your doctors to start treatment earlier. I’m praying, and feeling, like this baby will not have the dangerous blood type. But if it does, you are already on a good path to healthy baby. I wish you didn’t have to go through these extra things or drive far while you are nauseous, but I know God is carrying you. Xoxox
Thank you, friend. I really hope you are right about the blood type!
After the baby is born, is everything ok? Or does she need shots or other treatment? Honestly, I am not religious at all but I am praying for you.
Well, it depends. The baby might have to be born really early if it gets too dangerous in the womb, so we could be dealing with a preemie. If the baby is having some anemia in the womb he could be born anemic so they would treat him by putting him under lights (like a jaundice baby) or do a blood transfusion. Usually the baby is fine once he gets over his anemia.
My prayers are with you, and will be for months and months and months to come! I want this for you so badly. It sounds like you found a good medical team tah is willing to do everything possible to give this baby his best shot!
Thank you! We need all of your prayers, keep them coming!
Hoping this baby is negative so there’s no issue at all!
Just curious – is kell something they could check for at the embryo stage, like if you did the genetic testing before IVF? I’m assuming not yet, but it seems like such a horrible thing, they must be doing research somewhere.
They can actually check for the kell blood type with PGD and IVF and only implant the kell negative babies. We have two main problems with that scenario, though- we don’t have nearly enough money to try it and we don’t feel ok throwing away any embryos, so what would we do with the kell positive embryos? We would have to use a surrogate, but that is even MORE money and unfortunately, we just don’t have it 😦 If someone gave us about $40,000 we could try it!
Having a plan is great! Praying the plan works!
Thank you! I really hope it does too
I’ve been following you for a long time. I think about you so often and the pain and struggles your family has been through. I’m so excited for you that you are pregnant, that a plan is in place and I will pray for everything on your list! Always know that someone is thinking of you, your boys, your Lucy and this little one on the way.
Thank you so much, your message really encouraged me. It truly does help when people celebrate this baby with me and pray for us
So glad you have a plan in place this early! Out of curoisity, if the baby is NOT kell positive, is there any danger in this treatment plan? Praying for you!
There is almost no risk with these treatments, thankfully! I think the biggest risk is the possibility of the port becoming infected but hopefully I can prevent that by taking very good care of it while it is in. There might be a slight risk of me having some type of allergic reaction to the IVIG but the first treatment will be done in an OR at the hospital for very close monitoring to make sure I don’t have a reaction. Thank you so much for praying!