Wednesday, June 25, 2014

More on my MFM Appointment

Thank you for all your support and encouragement. All your comments really do mean a lot! I got several questions following yesterday’s post so I thought I would respond and expand.

On the twin front, I had anticipated my MFM might not be happy. But I also expected her to keep her opinions to herself – roll her eyes in her office and mumble about patients that don’t listen. I did not expect her to offer selective reduction. I really was in shock.

I actually had a preconception appointment with this MFM. If you remember I had preconception appointments with three MFMs before picking this one as the most knowledgeable and able to treat my possible platelet incompatibility issue. At my preconception appointment I actually asked if treatment would be any different if I had multiples. She said no, and then proceeded to be shocked that the NEDC would ever transfer more than one embryo at a time.

After this I came to learn more about Elective Single Embryo Transfers (eSET) where clinics in an effort to reduce the numbers of multiples only transfer one embryo. This approach works great if you are transferring fresh embryos (transfer one, freeze the rest) or if your embryos are frozen one to a straw. But when you freeze 2-4 embryos in one straw, trying to transfer just one can be tricky. This approach also works great if you are willing to select the strong embryos to transfer and discard the no-so-strong embryos – because who would want to spend $5000 to transfer a single 2CC blast. My understanding is that most clinics who do eSET will simply discard an embryo that is considered “weak”. But we all know that God makes the weak strong and that even against the odds these “weakling” babies grow into healthy children.

So when I saw my MFM yesterday – me now pregnant with twins – she wanted to know why we had not done eSET. I firmly told her that until it becomes the national practice to only freeze one embryo per straw eSET will not likely be an option for frozen embryos. I wanted to add (but didn’t) that despite the challenges that I know lay ahead I am really excited about having twins.

An honestly, while I highly disagree with her ethics, I do recognize her apprehension. It’s more than just general twin issues. My possible platelet incompatibility issue is not common. And twins are not very common. So twins with my possible platelet incompatibility issue are rare – so much that there is not any actual research on it. And as a doctor she likes to have a standardized treatment protocol backed by research. And she would have had one – if only it was only one baby. That said, I do know people with twins who have my platelet typing. And, really (with any medical issue) the worst case scenario is death. So, why choose death from the beginning?

Now, about my platelets. Let me start by saying, I have nothing “wrong” with me. Rather, I have an unusual platelet type. Most people don’t know their platelet typing, but I had mine tested because of my sister.

This all sort of works like blood typing and a women with negative typing needing Rhogam. So because my platelet typing was different from Leland’s I developed antibodies. Now, if I carry a baby who does not have my platelet type, these antibodies will attack the baby’s platelets, causing the baby’s platelet count to drop. We treat this by undergoing Intravenous Immunoglobulin (IVIG) infusions. The IVIG prevents the antibodies from attacking. We are testing our donors platelet type to see if these babies platelet typing will be the same or different than mine. Statistically, these babies do not have my platelet typing.

The platelet typing can either be AA, AB, or BB. (I have simplified this a little) I have type BB, which is uncommon. Both AA and AB would be “incompatible” and require treatment. If either donor (or both) has AA, then the babies have incompatible platelets. If both have AB or one or both has BB, then the results could be inconclusive. Have I lost you yet?

High School Biology Anyone?
But, you get the idea, right?

If the results are inconclusive we will have to do an amniocentesis at about 16 weeks to confirm the babies’ actual platelet typing (rather than predicting it off of their genetic parents’ typing). Equally, we could avoid testing our donors by just doing the amnio, but with a 1% risk of loss we would like to avoid the amnio.

Assuming our donors have platelet typing consistent with 95% of the population, the babies’ platelets will be incompatible with mine and I will need to do the IVIG infusions. These will be weekly infusions done at a local infusion center from 20 weeks until the time of delivery.

So if you’ve made it through all this medical stuff, I am impressed. And again, thank you so much for joining me on this journey and cheering me on each step of the way!

3 comments:

Malia said...

Thanks for explaining it! Prayers for you and the babies :)

Deborah said...

Thanks for the clarification! The platelet issue is not something I'd heard about before. And the challenges of using frozen embryos for single transfers is not something I'd ever thought about. But you are right, you're giving them a chance at life, and you'll see where it goes. Best wishes for a healthy and uncomplicated pregnancy.

PJ said...

Just another thing to entrust to God. He is greater than anything else in the world. He can bring you, Robert, Leland, and the twins through this into His will. Allow me to leave this prayer with you:

Almighty God, you are the the God of the impossible. You created the world out of nothing. You called Abraham when He did not deserve it. You forgave our sins through Your own effort. I ask that Your will be done here and Your kingdom be known through your servants Robert and Lara. Provide them with the peace and patience they will need over the coming weeks to face the challenges ahead. Forgive any frustration, worry, or doubt that they may have as they walk together along this road. Guide them in Your ways as You have been doing throughout their life together so that they may continue to see Your light and truth and be a beacon to Your light and Your truth to the world. Protect them from those who doubt against their decisions, those who might not understand their choices, and those who would seek to discourage them in general. Amen.