the beauty in Thalassemia

Almost three years ago I had never heard of Thalassemia. The first time I ever saw the word was on the file of a “Special Focus” child living in China. All I knew was that she received quarterly blood transfusions. After a quick call to a friend of mine who is also a nurse I put that file in a drawer… Her only comment was, “Blood transfusions in China scare me.” I had to agree. They scared me too.

Fast forward and this little girl was presented to us again. This time there was a red thread wrapped tightly around her file. It was clear we needed to step up our research on Thalassemia. My first call was to a mom that my agency connected me with. She had one daughter with Beta Thalassemia, and she was an expert. She was encouraging and realistic about what I could expect. She told me what I have now heard and repeated hundreds of times since that day, Thalassemia is “manageable!” Well, I didn’t stop there, I reached out to a Pediatric Hematogist at our local Children’s hospital. This wonderful man called me back and spent an hour on the phone telling me that Thalassemia was “manageable.”

It was not long after that conversation that Jeff and I took the leap of faith and filled out our Letter of Intent for this little girl. We believed that if this were our daughter, God would fill in the blanks. That He would give us the courage to face her “manageable” condition, no matter what that meant. God did not disappoint!

Sienna Grace entered into our world two years ago on March 1st. She was 4 ½ at the time. She had lived in foster care her whole life, and our time in China was not storybook. She was so sad and scared. She was jaundiced, her urine was very dark, and her spleen was huge. Was this really going to be, “manageable?” Sienna was one of the children that suffered under the Hague act in place at the time, requiring children over two to be immunized while in Guangzhou. This one medical visit wreaked havoc on her already compromised immune system. Thankfully, with the help of our great agency, and prayers being lifted up around the world, Sienna improved and we were allowed to leave the country early.

Once we were safely home, we had our first visit with that amazing doctor who spent an hour on the phone with me. I will never forget the way my heart broke when I saw the words, “Hematology/Oncology” on the office door. It was sobering to know that we would now be part of this family. But, what I found inside the doors was a cheerful and loving place. A place that makes children with blood disorders feel very special. Dr. Steve’s first words to us when he walked in were, “You have just saved this precious girl’s life..” I understand now what he meant by that.

Here were my observations of our little girl at our first “blood” appointment. She was brave! She was not scared or even fazed by her first blood draw. They took 8 vials, and Sienna assisted by handing the tubes one at a time to the technician. We stood there in awe of something that was obviously routine to her. That first appointment revealed that Sienna has Alpha Thalassemia, Hemoglobin H Disease.

It can also be referred to as 3-gene deletion. We also determined her baseline hemoglobin, retic, and white count levels. China had diagnosed her correctly.

I remember walking into the Hematology office for her first blood transfusion. I was so nervous… She skipped in with her pink suitcase I had packed with things to do. This transfusion was truly non-eventful! In most cases you have been to the doctor the day before to do what they call a “Cross & Match.” When you arrive at the office, your child’s “good blood” is ready. They hook them up with an IV, and you hunker in for 3-4 hours… It’s a laid back time, where your child can color, watch movies, and even walk around if they want too! I was amazed! Once we got in our routine, we learned that Sienna would need to be on a 2-month transfusion schedule…

Six months after bringing Sienna home we made the decision to have her spleen removed. It was so large that she was at risk of it bursting. Her doctors also had a hunch that this spleen was trapping healthy red blood cells she needed. They never thought this would cure her, but that it would help extend our time between transfusions. That splenectomy has changed Sienna’s life. She will continue to take penicillin twice a day for the next four years. Her hemoglobin and retic levels have been normal, and she has not had a transfusion since September 2010! A miracle!

This does not mean Sienna is cured of Thalassemia. She will always have it. As she matures, goes through puberty, and eventually gets pregnant, this could change. But, for now we rest in her break and give thanks for it!

I felt led to talk about Thalassemia in my first post to encourage you. Over the past two years multiple families considering bringing a baby home with this blood dis-order have contacted me. Many of those precious babies are home now! Two families in the past month have said YES, too!!! To assist others in this way is a blessing I never expected when we took our leap of faith! Please feel free to contact me if you too are getting the tug to bring home a precious kiddo with Thal! I am a true believer that if God calls you to this special need He will equip you to manage it, and bless you in the process!

Blessings,

Diana



Comments

  1. So glad to read this post! I came across a little girl with this issue and she has captured my heart! Hoping to learn more about her – your post helped me breathe better :)

  2. WOW! Amazing! Glory to God!

  3. Melissa Whitten says:

    Diana

    I just happened upon this, but now I know the Lord lead me here. We are waiting on our LSC for a little 3 yr old girl in China. Ands her corded cords said anemia & possible Thalassemai . I was wondering how accurate the records are in china? And what I should be looking for in the blood work.

    My email is mmdwhitten@yahoo.com

  4. Thank you for sharing!

  5. Thank you for sharing from your heart, Diana! Your sweet Sienna’s story will be a huge encouragement to many families, I am sure :)

  6. Diana,
    I love your post about your journey with Sienna. I too, have adopted a daughter with thalassemia. We are now in the process of adopting daughter number 2 with thalassemia. The rewards make the whole thing seem self-centered. Thalassemia is “manageable” and these children are nothing short of amazing.

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