Thriving with Thalassemia

My final post for the month about Ruth’s medical conditions is one I was not familiar with at all until I started researching the conditions on the medical checklist provided by Holt. 

After looking into the condition, both Trent and I felt confident that we could care for a child with Alpha Thalassemia. This is characterized by low Hemoglobin, and anemia. I also have a tendency to be anemic and feel tired at times, but it has never been a huge problem other than the fact that I cannot donate blood. Basically, it’s not a big deal. 

However, Thalassemia has a large spectrum of variations depending on the globin chains and the genes that are missing, which I will not pretend to fully understand. Beta Thalassemia Major requires regular blood transfusions every 3-4 weeks. We did not feel that at this time with our other children this would be the best fit for our family. There are a few Thalassemia Centers in the US, and one of them is at Children’s Hospital of Philadelphia (CHOP) which is about an hour and a half away. 

When we were matched with Ruthie, we knew she had Alpha Thalassemia. The fact that she was diagnosed with this (which is a very common condition in southern China where she was born), is a testament to how dedicated her foster family was to her care. Her foster family was to get Ruthie to gain enough weight to be able to have her cleft lip repaired. It seems that they were waiting for this to be accomplished before making her file available for adoption. Once she gained the necessary weight, she was taken to do blood work prior to surgery. This showed low iron, low Hemoglobin. Her foster family was told to feed her iron-rich foods to get this number up. A month later, another check, still low numbers. And again the following month. Ruth’s foster family knew something was not right, and pushed to get this figured out. After further testing, it was revealed that she has Alpha Thalassemia. 

We are blessed to stay in communication with her foster family; Ruth’s foster sister created the above image. Isn’t she talented??

Ruth received a blood transfusion and then was able to have her lip surgery. 

I’ve blogged before that since coming home to the US, we have had further testing done which revealed the exact genes that are missing. Ruth is missing 3 of the 4 genes on this chromosome, giving her Hemoglobin H Disease. And the one gene she has is “abnormal”, with the specific trait called Constant Spring. This gives our girl a chronically moderate or severe anemia. Ruth’s normal Hemoglobin is 7.9, but a healthy child would have a Hemoglobin between 12 and 16. 

Photo from differencebetween.com for you science nerds. Circled in red is Ruthie’s condition, showing just how extra special she is to have her condition. 

Honestly, you would never know Ruth has low Hemoglobin by watching her actions. She appears, while quite tiny (stunted growth can be a problem for HbgH kiddos), energetic and healthy. Diet cannot solve this condition and she will never outgrow it. However, she is thriving. She will need to be followed at the Thal Center at CHOP every 6 months. From what I understand, HbgH can present itself differently in each person. Some need regular blood transfusions, some need a splenectomy, and some are easily susceptible to illness and do not recover well. It remains to be seen what will be Ruth’s case. 

We have much hope. Our hope is in the Lord. We know that He placed Ruthie in our family. We trust that He will provide whatever is necessary to see us through any difficult situations. While this may end up being a more challenging condition than we originally anticipated, Ruth is our daughter and we will go to bat for her to receive the best care possible, just as we would for any of our other daughters. We also are tremendously grateful to be a home schooling family. While it requires much of me, it also prevents us from many of the common illnesses that spread so easily in classrooms. It is especially helpful for Ruthie if she can avoid illness as she may struggle to recover from even common colds and need a blood transfusion. So far this fall a couple of the girls have been sick, but Ruth has not caught anything. But again, if she does need the medical care, we have our family physician and other medical teams available to meet her needs. 

*Ruth loves to “help” wash dishes. Trent deserves some sort of sainthood for his patience with these two washing after dinner dishes.*

I had mentioned to another parent that I am actually glad I didn’t know of the severity of Ruth’s blood condition prior to adoption. Since I don’t fully understand how our blood works and it is unseen, it is intimidating and I may have not thought myself capable of parenting her. But God. He is so good to us. He has allowed us to fall helplessly in love with our little girl. There is nothing I wouldn’t do for her. And if she someday needs regular blood transfusions? Well, I guess we’ll just learn to know the roads between here and CHOP a wee bit better, we’ll be good at schooling in the car, we’ll lean on our family a little harder, we’ll press in to the One true God a little deeper, and we’ll enjoy our lives. Together. Just as we are today. 

Some worry they may not be able to love a child they did not give birth to. I wonder where this fear comes from? My spouse and I share no blood, but I would do anything for him. We are family.  It is the same for Ruthie. We share no blood, but she is family. 

It is my fervent wish and prayer that someone will be touched by Ruth’s story, by her life, by her fiery spirit, and take the step toward adoption. We cannot imagine life without our girl. 

Ruth is really into holding hands recently. How can your heart not melt with her tiny hand clasped in yours?