Thursday, August 2, 2012

Sometimes it is nice to have an answer

Time is a strange thing. It is gone in an instant and yet terribly slow. It feels as if a million years have past since the death of our little boy and yet like not long at all. It's been 11 weeks since I delivered our sweet one. There has been so many emotions; so many tears. Along with that has been tons of prayer (from us and others), armfuls of cards, and a beautiful memorial service, as well as several doctors visits as we move forward in hopes of finding out the cause of our son's death.

We have been able to find out a probable cause to Jaron's death. In many ways that gives me some relief. At our first follow-up visit, the doctor said there was nothing from the pathology reports that would give us a reason for his death. I walked away extremely angry and frustrated. Pete, however, was relieved. She said that she felt it really was a "fluke" deal and that it would probably never happen again, though she couldn't guarantee that, of course.

At that visit I asked her to run some blood work for my thyroid and any blood clotting issues. She didn't think that there was anything that would show up, but she was glad to do whatever I asked if it helped me turn every stone.

Honestly I didn't expect anything to come back either, but it did. They couldn't give me the information over the phone and I had already scheduled an appointment with a fetal and maternal specialist. Let me backtrack just a hair. I only had the blood clotting workup done because a friend of mine had lost her baby in January and had later found out that she had a blood clotting disorder - a gene mutation. She encouraged me to see if they found any blood clots. I had no other reason to have that run. I had previously scheduled an appointment with this same specialist for my progesterone issue but was unable to get to the appointment because of my emergency gallbladder surgery. It had taken me a month to get a consult for that issue. When I called to see this same doctor after Jaron died, they got me in within 4 business days. A miracle as this doctor is very good and very rare. The practice where I was seeing my midwife (and the doctor that delivered Jaron) forwarded the results to the specialist.

The specialist was amazingly patient and wanted to answer all my questions, get my thoughts on what happened, and just give me comfort. She then went on to tell me what she saw from my blood work. I have two different gene mutations that cause blood clotting disorders. I am homozygous for both A1298T and C677T. I haven't been able to do a whole lot of research on this yet, but basically it means that my blood clots when it isn't really supposed to and causes folic acid deficiency. After 6 successful pregnancies, one would wonder why this would show up now. Age seems to be a factor - I'm only 35!! It is similar to the breast cancer gene in that you have if your whole life (passed down from one or both parents) and they are not really certain as to what "flips the switch".

What the doctor believes may have happened with Jaron is that a blood clot started forming to cut the blood flow from the placenta (they found a blood clot during the autopsy, but did not notate exactly where it was found) and began to cut off nutrition to him. This is likely why he was measuring much smaller than when I delivered him as it had slowed his rate of growth. I was certain that I had felt him move just a few days earlier and now I'm certain as certain is, that I did.

Thankfully, my friend Brandi, was at the appointment with me. As I was feverishly taking notes, she was thinking!! She asked about my sister, who, as I mentioned before, was pregnant alongside me. She is still pregnant and that was our concern, that if this gene is passed down genetically, that she could also be a carrier. She was able to get in to see my doctor and just found out that she is also a carrier. She is only heterozygous for both gene mutations, which is less severe, and the doctor is fairly certain that there is no reason to be alarmed or do anything prophylactic at this point. She is taking additional folic acid and they are continually monitoring little Jayden.

My heart is healing, but I'm certain that there will forever be a scar on it from the sudden, unexpected loss, of my little boy. I have been very comforted lately reading Stepping Heavenward. It was the book chosen for our ladies ministry summer book club prior to my having lost Jaron. If you have read this, you will know what a blessing I have found it to be.
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Kim said...

You may not have all the answers right now, but when that day comes that you're standing face to face with Jesus, it won't matter why this happened. I love you sis and I still cry and think about Jaron.

Brandi in TX said...

I love you sweet friend. As you continue down this path of mourning, I stand at awe in the work the Lord has done in you and through you and Jaron. Continues love and prayers. b

Patti said...

What a provision of God to know to ask for this to test. I am astounded. Awed.


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