Wednesday, 1 August 2012

Clara: Massive Perivillous Fibrinoid Deposition

I wanted to write a short post about my horrid condition. It is so rare.

When you google it, various medical documents come up but there is no human face to it. Well, that's not strictly true as it is now mentioned on the Silent Love blog following my contact with the blog's author. That post now appears in the google search and it is my hope that once this blog goes live, anyone else searching for this may come across this post. Any pooling of information and resources is a step forward.

Massive Perivillous Fibrinoid Deposition (MPFD & sometimes referred to as Massive Perivillous Fibrin Deposition)… basically my placentas become clogged with blood clots and fibroids. These affect the function of the placenta and ultimately causes it to fail as it struggles to support my growing babies. There are different schools of thought. It could be due to an as-yet-undiagnosed blood-clotting condition or it could be due to an immune response. My bloods have consistently come back clear and we are of the belief that it is an immune response that causes this. My immune system is attacking my placentas causing the clots and fibroids to form and ultimately rendering my placenta useless. My girls fought hard but to no avail. My body let them down (despite being on aspirin and heparin when pregnant with Grace).

We are now pushing for a treatment plan that has worked for others with similar conditions. This involves aspirin, heparin, steroids and some sort of immune infusion therapy (IVIG or Intralipids, neither of which are available on the NHS). Our consultants have warned us that we are now sailing in unchartered waters. Time will tell.

If anyone comes across this post in the hunt for more information on MPFD, please feel free to contact me via the blog email address.

You can read more about my journey here Clara: My Story and here Clara: When Loss Keeps On Happening. This gives updates on our journey using the treatment plan we fought for which unfortunately did not work for us.

8 comments:

  1. I only know about this condition through you, and it saddens me that there is so little known about it and you are having to fight so hard; I hope that we can offer support to any other mums who have a similar condition or comfort and support to you xx

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  2. I have lost two baby girls due to this condition. The first pregnancy the doctors did not know what went wrong. The second time I was pregnant the doctors only found out what went wrong after the autopsy of baby Kaiden stillborn at 21 weeks.

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    1. I am so sorry for your losses. I have your email and will respond xx

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  3. Hello Clara. I have been recently diagnosed with this very rare issue. I just lost my son Cameron Charles to this at 23 weeks. I only found out the cause of the fetal demise through an autopsy. Like you, I was on a baby asprin and heparin twice a day because of previous losses. I wanted to know if you've gone through the treatment option you referred to in your article and if so, how did your body respond to it? Thanks for posting. I truly appreciate this post.

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    1. Can you please email me via the blog? I have lots of information to pass on to you. The treatment plan wasn't successful for me but it has been successful for others. I have lots of research and information I can pass on. The blog email address is lossthroughthelookingglass@gmail.com

      I am so sorry for your loss xx

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  4. Thanks so much. May we all be comforted as we go through. May we always love and remember our dear sweet angels.

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  5. Hi Clara,

    This post is very helpful to me I have lost 4 pregnancies to this condition and know nothing about it I am giving up hope. I have sent you an email for information please.

    Susan xx

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    1. Susan,

      I have your email. Will reply today. I am so sorry for your losses.

      Clara xx

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