Saturday, December 7, 2013

Living thalassemia

Our little sweetness has been with us now for 6 months. Its unreal, really. Six months of days and nights with her. Six months of joy unimaginable.

Our little sweetness has thalassemia intermedia. Her sister Mia has thalassemia major. Thalassemia is a genetic anemia, very prevalent in Guangxi. Both parents must be carriers in order for a child to have it. Health care in rural Guangxi is so poor, substandard in so many ways. The only way to live with thalassemia is to have regular blood transfusions, and receive daily medication to remove the iron which becomes overloaded in the body as a complication from receiving the necessary transfusions. If a person receives transfusions, and does not receive the necessary daily medication, the iron builds up in vital organs such as the liver and heart. A published study looking at thalassemia in Guangxi suggests all children with the condition living in that region of China will not survive. 100% death rate by age 10. 100%. It's shocking. Sobering.

Here in the US, and in other countries with well developed health care, treating a child with thalassemia is relatively "easy". I don't mean it lightly, or to simplify it. But the treatment modality exists. There is access to a safe blood supply. There is knowledge of the potential reactions to a transfusion, so precautions can be taken. Transfusion medicine in the US has experts, who have devised appropriate tests and assessments to make quality of life easier. For the past two years, Mia has been receiving blood transfusions, specifically red blood cells, every three weeks. She is treated at Boston Children's Hospital, which is only 30 miles away. The transfusion takes up to 4-5 hours, depending on how anemic she is. And then we go home. She then wears an infusion pump 6 nights a week, for 10 hours at a time, to combat the iron overload. And we live life.

With thalassemia intermedia, it is a bit more complicated. Hannah produces some blood cells that help her anemia to "not be as bad" as Mia's. However, it comes at a cost to her little body. Her bone marrow works in overdrive to produce cells. Over time she will have physical complications. At this time, she can compensate and live with a Hemoglobin in the 7's. She can even grow and have energy while being this anemic. But, is it fair? The hematologists have said it is not worth it to have Hannah's body struggle. We should transfuse her with Mia, and allow her to live without taxing her body. This means that in the upcoming months she will need the medication, which will be by pump, because of transfusions. It has been a decision I have struggled with, and will likely revisit over and over again.

I am NOT a hero. I am NOT an angel. I am simply an ordinary person. A mother. I am just like everyone else who wanted the chance to raise children. I never thought I would be able to parent a child needing blood (yikes blood). I laugh at the funny things they say. I live to see them having fun. I get frustrated at stepping on the legos on the floor. I bolt out of bed wondering if I remembered to move the stupid elf at this time of year. I worry that I will have to see the NP on transfusion day who does not take any of my concerns seriously. I am grateful for our exceptional hematologist whose passion is kids like my girls. I wonder why God thought I would be the one best for them. I fear that my best will still fall short of what they need. I know that bickering drives me crazy, and watching them all play together brings tears of joy to my eyes. I love watching them learn and grow, and have hopes for a great future for all of them. Just because two of my children have serious medical conditions does not somehow put me in some different type of mothering category. As mothers, we do what our kids need. I am no different.

My baby girl has thalassemia, but it does not define her. This is why I have purposefully chosen not to reveal her condition on this blog until now. I hoped that everyone would see her as the beautiful child she is, not for her diagnosis. She brings smiles to faces of everyone. She brings happiness to young and old. There is a little boy with autism at the after school program where my older girls' attend. If he is there, and sees Hannah, the biggest smile comes across his face. She beams right back to him. She is special, and all can see it. And we are the lucky ones who get to be her family. We are the lucky ones who get to live alongside her.

1 comment:

  1. Hi! A friend recommended your blog to me as we also have a daughter with beta thal. I posted on your other blog that we would be more than happy to help advocate for children with beta thal. In fact, we just started paper chasing for the third time. We haven't been matched yet. If you have been asked to find a family again, we're more than willing to pray on it!

    Also, I notice you're only a half hour from Boston...we live on teh Boston side of Hartford and have relatives north of Boston. Perhaps some day we can get our girls together so our Mia can meet your Mia and see she is not the only girl with beta thal in the world. :-)