Xiao Guo Zi

February 21, 2009 alpha thalassemia, Blood Conditions, Family Stories, thalassemia 0 Comments

By Stacy, Mom to Xiao Guo Zi from China (NSN) with Alpha Thalassemia trait and asthma

We waited anxiously for our NSN referral to come in. Waited and Waited. All the others came in, still we waited. My husband went out to the store, and I waited. Finally, when I was certain for some reason that we were not getting a referral, I got the call! She was beautiful! She was a toddler at approximately 16 months. My husband came home and plastered the house with her pictures. Soon after, we got the paperwork from Fed Ex.

My heart sank when I saw our daughter’s Complete Blood Count (CBC) results. Something did not look right. I started to search frantically on the web and came up with Thalassemia. We contacted an international adoption doctor who consulted with a pediatric hematologist at one of the five Thalassemia Treatment Centers in the U.S. Yes, unquestionably, our daughter had some form of Thalassemia. However, in their opinion, it would probably be manageable with few or no blood transfusions needed. It was however, uncertain and there could be no guarantees. We were in shock and quite stressed through these several days, trying to divine and understand a condition that we had never heard of. We were also concerned that her hemoglobin was low enough that she could have a more complex form of the condition than the simple trait (two gene-deletion). We asked for a second CBC to ensure that it was the same as the first and not a file mix-up. Had we known what our daughter had to go through to get that second CBC, we never would have asked for it.

We struggled, prayed and waited. We were unsure. It was sobering to find what was expected to be a NSN referral could well be SN. We were warned by the international adoption doctor that if we asked too many questions and identified her condition, she would most likely be transferred to a special needs list and we would not be able to adopt her. If we wanted this child we would need to accept her quickly.

Five days later, September 8, 2005, we knew we wanted to accept the referral, we called, faxed and had our acceptance sent to China first thing that morning. We were sure that whatever the future held, whatever form of Thalassemia our daughter had, we would find a way to deal with it. Only 2 hours after we faxed our response to China, my 100-year old grandmother, who always told me that she had to stay alive until I had a child, died. She had kept her vow. It was a bittersweet day.

Its been over three years since we got home. Our daughter is doing great and living up to her nickname – Little Pot Boiling Over – with emotion, with excitement, and with the need to say what she’s thinking – she is always thinking.

Her Thalassemia was tested and turned out to be Alpha Trait, which is very manageable. Combined with her asthma, she is more weak than most when she has a respiratory infection, due to anemia and a lack of oxygen. At times I can tell when she is not feeling well, because the area around her nose and mouth turn bluish, as if she had a Mongolian spot there, but it only shows when she is not feeling 100 percent. When she is recovering from an illness she is sometimes too tired to run with the other kids at school. I have read that kids with Thalassemia are more prone to infection with mycoplasma pneumoniae and she has had her share of it. We no longer take vacations at 8,500 feet or above in altitude, as there is not a lot of oxygen available. She will need genetic counseling if she considers having a birth child, but at this point she swears she only wants to adopt. Her asthma is treated with standard medications and is well controlled.

She has been our wonderful gift and we are so happy that we accepted her referral, even though the extent of her condition was unknown at the time. We are still sure we would have found a way to deal with it if her condition were more serious. She is bright, funny, loving, adorable and a joy in our lives.

If you want to know more about Alpha or Beta Thalassemia, there is more information on this website and at Thalassemia.org. There are Yahoo Groups addressing these conditions: Adoptingthalassemia and Thalassemiaparents. While Beta Thalassemia occurs in China, Alpha Thalassemia is said to be more prevalent in China and Southeast Asia. Both Thalassemias are most prevalent in the most southern provinces of China, especially Guangxi and Guangdong.

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