Parent Perspective: Raising a Child with Thalassemia

May 13, 2015 – Amy Long, the mother of a child with thalassemia, has generously shared her experiences with raising her daughter, who was born with thalassemia. CAF thanks Amy for allowing us to post this warm and loving story.

Raising a child with thalassemia is both devastating and rewarding. By having a child with thalassemia, you have to deal with many difficult situations, but at the same time, you will gain a lot of knowledge from dealing with those difficulties.

Luola as a baby

Luola as a baby

Our 14 year old daughter Luola, who was born with thalassemia, is a brave, talented, and beautiful high school student.

Luola was born in a small town in southwest China where treatments for thalassemia patients were very limited. She was diagnosed with beta thalassemia major when she was 8 month old based the symptoms (e.g. got sick very frequently, her face was very pale, and she had extremely low hemoglobin of 5 g/dl). We noticed that Luola’s face was pale when she was around 4 months old and we took her to the local hospital, but they found nothing except what we were told that was having “physiological anemia,” which they said was considered normal for her age. We knew nothing about thalassemia, so my husband James and I followed the doctor’s orders by adding baby cereals and egg yolks to her diet plan instead of taking her to be tested in a more advanced facility.

We did this for a month or two, but we did not see any improvements. We took her to the same hospital again, but we were told the same thing (physiological anemia and monitor with food). We waited for another 2 months until Luola’s body became weaker and weaker, and her face was very pale. We finally decided to take her to the Children’s Hospital of Chongqing in China, where we found out that she had thalassemia and needed blood transfusions. We were told that Luola’s life would be reliant on blood transfusions and the only cure was bone marrow transplant. Without a bone marrow transplant, we were told that she would not live over ten years old even with frequent blood transfusions.

Again, because it was our first time hearing the word thalassemia, we had no other option but to wait helplessly while she was transfused. She was given IV antibiotics for a few days before she had her first blood transfusion; the doctor had told us that the antibiotics were used to prevent infections. After this, Luola received blood transfusions every 6-8 weeks, and for every blood transfusion she had to go over the entire procedure: stay in the hospital for a few days to a week and receive antibiotics until she finally received the most important treatment: a blood transfusion.

Like every parent, we tried every possible treatment options to save our daughter. Since we learned that the only option to cure the disease was bone marrow transplant, we tried to find matched donors. Neither James nor I were good candidates (only 50% matched from each of us). However, the doctor tried to convince us to go ahead and have a bone marrow transplant for Luola, even with an imperfect match. But we knew that with only a 50 percent match, the survival rate is very, very low. So we decided to not let Luola to go through this procedure because, and that was the right decision.

Yet, we did not give up our search for the best treatment option for Luola. We decided to seek treatment options abroad (in the U.S.), but at that time we really had no idea of where to go and how to start our journey. A decade ago, getting a visa to the U.S. from China was not an easy job unless you had a good reason.

We began our journey by finding study opportunities for James, and he was fortunate enough to be accepted to Pace University in the fall of 2001. After he arrived at this country, James not only started to search for doctors who is specialized in thalassemia, but also started the process of getting Luola and me to the U.S. as soon as possible. By the time Luola and I arrived in New York City in March 200,2 James had already set up appointments with Dr. Patricia Giardina at the New York Presbyterian Hospital.

Luola was treated by one of the best hematologists (Dr. Giardina) at one of the best hospitals, and we learned that there other available resources, such as Cooley’s Anemia Foundation, for thalassemia patients, which opened us to many more opportunities. Although there was a language barrier for us, especially for me (I could not speak a word of English and needed a professional interpreter for the first few years every time Luola had a doctor’s appointments), we tried extremely hard to overcome this difficulty. By the time I was able to communicate with others in English, I learned that having a child with thalassemia was not as bad as I had been told in China. I had confidence that Luola would be able to live a long life, like many other patients. The disease is manageable with regular blood transfusions and iron chelation. In addition, I saw and heard of many thalassemia patients who lived over the age of 60.

Therefore having a child with thalassemia was not as devastating as we had told, and our family found rewards that came about because of Luola’s condition. For example, both James and I were able to study and work harder to not only establish our new life in this country, but also to get the best possible education (James has 4 master degrees and I have a BSN). In addition, we also have two beautiful and talented daughters (Luola and her little sister Bessie). Luola is attending one of the best public high schools (Stuyvesant High School) in New York City and she is looking forward to fulfilling her dream of becoming a doctor, perhaps a hematologist.

Luola demonstrating her skill.

Luola demonstrating her skill.

Last but not least, I want emphasize that having thalassemia does not limit your life opportunities or experiences, because after going through many hardships, you not only gain knowledge but also gain confidence – the confidences to be a strong person both mentally and physically. I never limited or discouraged Luola from doing anything because of thalassemia. Instead, I always encouraged her to try new things. As a result, Luola is excellent in both academics and sports. She is a straight A student and an excellent debater who has won many awards, even in her first years. She is also a good swimmer who was selected to her school swim team out of many candidates.

Of course, Luola will not taking any challenges alone. Our whole family is here to support her and we all look forward for new challenges every day. Bessie is trying hard to be a better swimmer, James is working hard to raise our whole family, and I am working hard on finding a nurse job. All this helps us get a better life and enables us to make contributions to the world of thalassemia (such as through helping CAF).

Amy and her family

Amy and her family

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