Wednesday, May 12, 2010

Un-Answers.

We learned awhile back about possible causes for Maelee's death. I didn't want to post about it but for some reason I think I should. Feel free to skip this medical mumbo-jumbo. Here goes.

While I was delivering Maelee, I got an infection and ended up with a fever of 104 that finally broke a few hours after delivery. Maelee's autopsy (incredibly hard to read) states she died of an infection. However, our doctor said that is not the case and she thinks the coroner just found the infection that I got during delivery. Since Maelee was already gone two days before I got that infection and because I wasn't sick at all during pregnancy, that makes sense. But it does suck that our autopsy didn't come back with a nice, clean-cut answer.

Our doctor believes that a blood clot was the cause. They did a lot of blood work on me and found out that I have Factor V Leiden blood clotting disorder. This means that my blood can clot easier than normal. Unexplained pregnancy loss is linked with Factor V. My sister found out days before I did that she has the same thing, one copy of this genetic disorder. Besides pregnancy those that have it need to be more careful during plane rides, long periods of inactivity, etc. The test for Factor V has only been around for six years. It costs a lot otherwise they would probably test all pregnant people (frustrating, I know).

They put you on blood thinners to counteract the disorder during pregnancy. My sister, who is pregnant and due October 12th, has to give herself a shot everyday and that's what I'll have to do if I ever get pregnant. Right now, I'm taking a baby aspirin since I have a higher chance of clotting for six+ weeks after pregnancy (which freaks Greg out and causes him to make sure I'm breathing in the middle of the night).

At 34 weeks when I was in the hospital for three days with possible preeclampsia, they found out I had thrombocytopenia (low platelets). I thought there may be a connection with this blood stuff but it is completely unrelated to the Factor V. Platelets prevent your blood from clotting... and Factor V disorder means your blood is prone to clot. Go figure. To prevent me from developing preeclampsia they put be on bed rest. In retrospect, that could have been the worst thing because the inactivity could have caused the blood clot. But we don't dwell on that. We did everything we were told with Maelee's best interest...

BUT, even with this knowledge, Maelee's autopsy does not say there was a blood clot, everything checked out normal in her cardiovascular system. And all other tests on Maelee and I came out normal. Confusing, eh?

It sucks anyway you look at it. Even if we knew every answer, every why and how, it still wouldn't bring Maelee back. Thankfully our peace isn't found in any answers... it's found in knowing that one day, one glorious day thanks to Jesus, we will see Maelee again.

I am very determined, however, that for future pregnancies we will be incredibly proactive and will hopefully find a doctor with a good knowledge of blood clotting disorders. If anyone knows of a good ob/gyn in Columbia/Lexington, pass on the info. My sister has a wonderful doctor in MN that specializes in blood disorders and who has been very proactive with my sister's crazy difficult pregnancy and even helpful to me. Her doctor was the one that told her I needed to be on baby aspirin because of the increased risk of clotting after pregnancy. Too bad I can't fly up to MN for appointments.

We know that even if we get to bring home a healthy baby someday (oh Lord let it be so!!!) that Maelee will still always be a part of our family. Father Tony said the day of Maelee's funeral that Maelee will never be replaced. This was very wise - we can't think any future children would be a replacement for her. She isn't replaceable. She's still a part of us. A part that we miss dearly.

-Heather

8 comments:

Anonymous said...

I am so glad you posted this info. You guys post helps me so much. We are praying for as much as we were first day you lost Maelee. I do know a great ob/gyn his name is Dr.Shipley. He specailizes is high risk pregancies. I really liked him. I will tell you more if you want more info. We miss you all.

Rebekah said...

Heather,
I actually wish I had something great or profound to say to you. I sometimes think it might sound dumb to just say "I'm still praying" - but really that is all I've got. And it is true.

You are on my mind daily. I pray for you many, many, times a day. I pray for peace, healing, strength, and the list goes on and on. And then I run out of things to even say, so I just ask the Holy Spirit to take over. You are very loved by our family.

~Rebekah

Kim Schell said...

Thank you for sharing, I have been wondering if you had gotten results back. I'm sorry no real answer was found. It made me smile through my tears that you do one day hope to bring home a healthy baby, not to replace Maelee, but to add to your family. I am sure Maelee would have wanted siblings :)

Kim

Anonymous said...

Heather, I read a blog called http://thespohrsaremultiplying.com/. They lost their firstborn a bit over a year ago. She was a preemie in part due to issues from her mother's clotting disorder. They just recently had another baby; this pregnancy was more closely monitored since they knew about it this time around. She is in Cali. but might have some information that you could use.
I am so sorry for the loss of Maelee.

TheSpeights said...

There is also a site called "Circle of Moms" and there is a message board about this very thing. I don't know if it will help, but here's the address to visit:

http://tinyurl.com/25agdq8

I'm so sorry you are dealing with all of this, but I'm glad you know about this in order to take care of yourself and bring home a healthy baby one day. (YOU WILL!!) I think about you guys all the time and of course keep you in my prayers. Love you three!
-court

Anonymous said...

Heather - I am so sorry that many things are still unanswered and continue to pray the peace of God's presence over you both.

I was diagnosed with FVL hetero and MTHFR hetero a few years back. I've been through pregnancy on blood thinners and am happy to answer any questions you might have.

I see Dr. Shipley - a high risk OB over at Lexington Medical who is very familiar with clotting disorders. I also see Dr. Ackerman, a hematologist at SC Oncology who also monitors things during pregnancy. When you're up for it, you may want to meet for a consult with potential doctors to investigate treatment options.

Peace -

Marissa (marissa.burt@gmail.com)

Anonymous said...

There is also a great yahoo group listed under: FVL-PG · Factor V Leiden and Pregnancy Issues - Lots of ladies there with similar experiences and a whole wealth of information. M

Anonymous said...

Precious Heather and Greg,

It is good to hear about this from you.... I just wrote you a huge long comment that got lost somehow.

But the short version is: know that you are loved and well prayed for. We are praying for you and for Maelee's future siblings ahead and doctor choices...... We love you so.

jill