Glad We Didn’t Know: Adopting a Child with Von Willebrand Disease

March 22, 2017 Blood Conditions, March 2017 Feature - Blood Conditions, Takayasu’s arteritis‎, virtual twins, Von Willebrand 2 Comments

For four years I prayed that my husband would say yes to adopting again from China. And out of the blue he mentioned – in passing – that he felt like we had another child waiting for us.

Within 24 hours, a friend had sent me a photo of a four year old little girl who had been waiting a very long time. This precious little girl was 28 days older than our first daughter, which I did not know when I first saw her face.

But I knew she was our daughter.

The agency that had her file had a policy against adopting out of birth order and artificial twinning. And she had a heart condition, which made my husband very nervous…..

But she was ours, I just knew it.

Fast forward to ten months later and we were finally meeting her, our Alexis. She was very tiny at five years old, she weighed only 21 pounds, and she was so very pale. When we met her, we were given a packet of iron pills. And we were told she was anemic, that she bruised easily, and she would have a bloody nose quite frequently.

The orphanage staff mentioned that her heart condition was not an issue, and basically told us she was pretty healthy. I knew this was not the case just by looking at her. Our Alexis could barely walk and was in a lot of pain.

Once we arrived home, her pediatrician took her off the iron pills so that she could be tested to be sure she was really anemic. Her blood work did not show anemia, but there were red flags of concern. So off to the hematologist and oncologist we went.

Within a month of being home, Alexis ended up in Pediatric Intensive Care due to a significant issue with her lower aorta. During this time, she was diagnosed with Von Willebrand disease, as well as Takayasu’s arteritis‎ (I’ll save that disease for another post).

Von Willebrand disease is a lifelong bleeding disorder in which your blood doesn’t clot well. Most people with this condition inherited it from a parent. They have a faulty gene that causes problems with a protein important to the blood-clotting process.

What this means for Alexis is that she has to have infusions of factor prior to any surgery or invasive treatment. It also means that she will need medication occasionally even for a baby tooth that falls out. These include infusions of prepared doses of concentrated blood-clotting factors containing Von Willebrand factor and factor VIII.

Von Willebrand disease has not stopped Alexis from doing the things she loves and she even is training in Shaolin Wing Chun, which is Chinese based Kung Fu (think Bruce Lee). When she begins sparring, we will have to carefully watch her for bleeding, mainly internal, but even that can be treated with factor.

Unfortunately, because she has Von Willebrand, it has made it harder to treat the Takayasu’s and congenital heart disease (which is still an issue) because she has to take blood thinners for the rest of her life. If it was not for her other health issues, Von Willebrand would not be a big deal.

I am thankful that all of this information was not in her file because if it had been, she would not have been our daughter. We would have been too terrified of the unknowns.

If you have any questions about Von Willebrand disease, Takayasu’s arteritis, or congenital heart disease, please feel free to email me.

– guest post by Kendra

2 responses to “Glad We Didn’t Know: Adopting a Child with Von Willebrand Disease”

  1. Lisa Murphy says:

    I knew who the author of this piece was by the time I got to “But she was ours, I just knew it.” Well done, my friend. So glad she’s yours. Love you guys.

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