Protein S

Six months. Twenty six weeks. Half a year since we said goodbye to baby Faith. I have dealt with so many emotions in that time. Not having a reason of death was maybe the hardest thing for me to accept. And so I blamed myself. I dealt with the guilt. I forgave myself. I vowed to do better next time.

Now, six months later, we have a probable cause of death: decreased Protein S activity. We tried running the lab in March, but the test wasn’t resulted. We tried again in June, but they didn’t draw that one among the slew of other ordered tests. Finally, last week, we got a result.

Protein S is a part of the inhibition of the clotting cascade. It is a vitamin K–dependent anticoagulant protein. It actually helps regulate how much your blood doesn’t clot. With decreased activity, you are more prone to clots. In the non-pregnant state this can lead to deep vein thrombosis. In pregnancy, “there may be an increased risk of fetal loss later in pregnancy, severe preeclampsia, abruptio placenta, and fetal growth restriction.” (Medscape) We experienced two out of four of these with Faith. She simply wasn’t getting enough nutrients to grow, likely due to a clot in the umbilical cord or placenta – somewhere along the line of transferring the nutrients that she needed.

I should be relieved to finally have some sort of explanation for her death, but it is taking me a bit to process. It forces me to rethink my role in our loss. Not only is it a probable cause for Faith’s demise, but it also puts me at increased risk for baby Skywalker’s pregnancy.

We had an ultrasound a couple weeks ago and he looked perfect. At 19 weeks, 2 days, he was measuring exactly 19+2. A relief. But the ultrasound before he was measuring 5 days ahead. Faith also was measuring ahead at an early ultrasound, then at her 18 week ultrasound she was showing low growth. It is so hard not to compare and speculate and worry. I try to remember,

 Matthew 6:25-27 25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?

 While I haven’t seen the doctor in person since the diagnosis, we have spoken a couple of times over the phone. Treatment seems simple enough: low-dose aspirin and a shot of Lovanox (an anticoagulant) daily. I picked up that prescription today then went to the office to learn how to self-administer it. I’ll probably be on it through two months postpartum. I’ve never been afraid of needles, but the idea of giving myself a shot every day is taking some getting used to.

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And then there’s the fact that while I’ve been seeing this high risk OB throughout my pregnancy, I haven’t really considered myself high risk. To me it was more a formality. Standard after a stillbirth with unknown reasons. Our baby would receive extra monitoring to check growth, but in my mind, it was never because of my own health. And now it is. Now I feel I have officially entered the realm of high risk pregnancy.

From midwife-assisted care for my first three, to high risk care for my fourth. What a difference. I am thankful that I am under this care. That we are testing everything this time, not leaving anything to chance. But even with the more medicalized care and more answers, we are not in control. I am not naïve. Anything can happen. But we continue to have hope for this new life. Feeling all of his little kicks and rolls helps a lot when I do start to worry. And I am reminded that my hope is in the Lord.

Psalm 62:5-8
Find rest, O my soul, in God alone;
my hope comes from him.
He alone is my rock and my salvation;
he is my fortress, I will not be shaken.
My salvation and my honor depend on God[a];
he is my mighty rock, my refuge.
Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.

The start of our Journey of Faith
The start of our Journey of Hope

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9 thoughts on “Protein S

  1. I am sorry that you are going through this, but so happy that you were able to conceive again (my biggest fear right now). I don’t have Protein S problems, but I do have Factor V Leiden and G20210 A defects as well as MTHFR. These stinky genes travel in packs. I was on lovenox through the 32 weeks of pregnancy. We lost Isaac to an abruption brought on by hypertension/HELLP Syndrome, but it’s thought that ours wasn’t related to a clot. The lovenox is an adjustment, but you will get quite used to it. I recommend sitting with an ice pack on your belly (over your shirt) then for the last minute while you get the shot ready put it right on the skin. Inject slowly to avoid bruising! I’m on it 6 weeks postpartum right now still. Let me know if you want any more tips,

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    • I’m so sorry for your loss. It is so so hard. I hope you have a good community of support surrounding you now. I don’t know what we would have done without ours. Someone suggested I get tested for MTHFR, but I really don’t know much about it. I have to be tested again next week to check on my platelet count since it was already low and the Lovanox can lower it further. It does make me worry a bit about HELLP. Thank you so much for the tips on administering the shots. I’m afraid I’m saying goodbye to a cute pregnant belly and will be left with a bruised belly for the duration. Does the ice help with the bruising too? I didn’t find the shot itself painful, just a little burning a minute later.

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  2. My dad swears the ice helps with bruising. Another tip he had for me that did seem to help was to vary the depth of the needle during the shot so it doesn’t pool in one spot. I bruised periodically. I think I’d hit a tiny vein or something. I did find if have phases. One side would be less painful, or one angle would burn least. The next week it would be something different. After a certain number of months i was very tender, but then one day it became less painful. My belly is still very stretchy right now and that makes it harder to actually do and it hurts more for some reason. I do not know much about MTHFR. I plan to learn more before we take any steps to try again. I don’t know that the gene itself results in higher risk for blood clots, or if it is more common in people who have defects in other genes that increase the risk. Not sure if that makes sense. We have a small community…we were on vacation when it happened and we’re stuck there for a few weeks. We had also just moved before I got pregnant and so we don’t have so many friends around here. We’re doing our best though.
    Stay healthy….I’m sending positive thoughts your way.

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    • Another question about Lovanox, because I can’t find my answer anywhere: does it tend to raise blood pressure or anything? I’ve been taking my shots in the evening since it’s the only reliable time I can always have a quiet two minutes to get it done, and in the past week, more often than not, I’ve gone to bed only to get back up, unable to sleep because of a pounding heart. It’s not chest pain at all, which I do see mentioned as a side effect, it’s just like my pulse is stronger and faster than usual, and I usually have low blood pressure. I might stop by a pharmacy while I’m in town tomorrow to check my blood pressure.

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      • I don’t think lovenox does…we lost Isaac after I had hypertension induced placental abruption but I was on the lovenox for 6.5 months before my BP went up. I also had low blood pressure. I would call your doctor first thing. The pounding heart was one of the symptoms I mistook for normal but was a result of the excess fluid I was retaining and raised BP from preeclampsia . You deserve your happy ending and it’s most likely nothing at all but not worth the risk of assuming so. Let me know what happens. I’m about to do my shot as I’m writing this.

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      • I wasn’t concerned about it until I couldn’t find anything in the side effect list, but thought I’d ask the only other person I ‘know’ who has any experience with this drug. I need to call tomorrow anyway to find out about another blood draw I need to do, so I’ll add this to my list of concerns. Thanks for responding so quickly!

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      • No problem – I think they would have suggested the lovenox as a cause of my elevated BP when I first got to the hospital and immediately informed them I was on it. I’m hardly an expert but happy to help if I can any time. Please let me know what they say! Good luck.

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      • Update: the nurse on Thursday told me to make sure I’m drinking enough water. Said it could also just be a normal part of pregnancy, or that the meds are working so there is more blood flow pounding through my heart. I’m trying to up my water intake as I have been working outside a lot in the heat and probably not keeping up with all the sweat I’m pouring out. Took my blood pressure while I was at the lab for bloodwork and it’s completely normal, right where it always is. I’m glad I asked and checked my BP. Also, my platelet count came back normal this time. All a big relief.

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