Fear on the Edge

Lately, I admit I have let fear take hold of me. I feel like I am standing on the edge, preparing to jump and I am just plain scared.

On the eve of my anatomy scan, I have the “normal” worry about the overall health and growth of my girls. I also have the added weight and worry about the impact of NAIT (my platelet issue) on the girls. I worry that I or the doctors will make the wrong decision which could forever impact the health of one or both of these precious girls.

This worry and fear actually led me to get into a little spat with my OB at my last visit. It started as a disagreement between whether delivery should occur at 37 or 38 weeks (protocol says 37, which was my argument). He kept insisting that he would make that decision when the time comes based on the monitoring of how they are doing. The huge flaw in his argument is that there is no way to monitor “how they are doing” in regards to NAIT because there is no blood test to monitor and the only thing an ultrasound can tell us is if there has already been a bleed on the brain at which point it’s too late! I reminded him several times that there is no way to monitor them, at which point he finally snapped “well, you’re the one who decided to get pregnant” and walked out of the room.

This worry and fear for their health has also given rise to a fear of guilt. As my OB not-so-gently stated, I did decide to get pregnant even with this medical issue. I chose this for my girls. A few weeks back I was really struggling with this, wondering what mother puts her children knowingly at risk. Thankfully, I have come to a place of overwhelming peace on this front. I was driving; worrying; praying - and then God made it really clear to me. I am being obedient to Him and whatever happens is therefore His intended plan to bring glory to Him. I didn’t get reassurance that they will both “be fine” but I have been covered in God’s grace and peace. Having this weight lifted has been huge.

Yet, even when that weight lifted, I still stand in fear. Going to the doctor; standing my ground; advocating for my health and my babies health; battling wits over medical journals with professionals who are top in their fields – it’s all exhausting. And then there are the infusions. I know they will take 5-6 hours each at one per week and I know the list of possible side effects. And still there is an overwhelming fear of the unknown. This fear has me on edge; it brings me to tears. 

Please keep us is your prayers over the coming days and weeks. Our anatomy scan and follow up with the hematologist is tomorrow. My first infusion is on Thursday, September 18^th. 

Donor Testing Results

Our donor’s platelet typing test came back and I really can say that the results are both an answer to prayer and confirmation of our momentous journey ahead. If you’re not caught up on what I am talking about you can check out my posts on the platelet incompatibility issues and on asking our donors to undergo testing.

Our donors are both platelet type AA. This means both babies will also be AA. For a visual, I am bringing out my inner geek again with a genetic table:

Since my platelet type is BB, I am incompatible with both babies. And without treatment, my antibodies would attack and destroy the babies’ platelets. Finding out that our donors are both AA is an answer to prayers in that the information is conclusive and I will not need to undergo an amniocentesis. On the other hand, I will need to undergo weekly IV infusions of Immunoglobulin (IVIG) starting at 20 weeks, though the time of delivery.

Sometimes I think about this as just one more step on our uphill road to parenthood. Sometime I just take it in stride knowing God has an awesome plan for my life and the lives of my children, no matter the challenges or outcomes.

Other times, the fear of the unknown and the magnitude of the journey ahead are paralyzing. Fear can be crushing. And this journey, if we let it, can be full of fear. 

Donor Testing

I have to admit, making the call to our donors to ask them to have testing done was nerve wracking. It’s only a blood draw, but it needs to be done ASAP. And because it’s technically genetic testing they will also have to meet with a MFM or genetic counselor. It felt like a lot to ask. 

What I discovered is that they are happy to do it. Because they love these babies too. They understand the risk of an amnio and will do whatever is necessary to help us avoid the risk. 

What seemed like a scary conversation – one that made me feel like I was imposing just a little too much – has actually turned into a bonding experience. It’s given us extra reasons to talk and email over the last several days. It’s made us partners in a mission, coordinating doctors and lab tests on opposite ends of the country.

This “open” relationship stuff is a little new to us, even though we have an open relationship with Leland’s genetic family. With Leland’s genetic family, we only started having personal contact after he was a year old. Prior to that the National Fertility Support Center communicated between us. I don’t think either of us would have minded direct contact from the beginning; it’s just that this was all so new and neither of us were sure how the other one felt. Even once we made direct contact, it has taken time to build a relationship.  

With our twins’ genetic family, we’ve been talking on the phone and emailing for months. I’ve called her after each of my appointments and sent her pictures. With each ultrasound I know she shares in my nerves as to the health of the babies. 

I am happy to report that the testing is underway and we should hopefully know the results by the end of next week (or maybe the following week because of the holiday next Friday). I am so thankful to our donors – not only for blessing us with these babies, but for loving them so much that they would drop everything and get this testing done so quickly. 

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!