Fluffing up his pillows around him on his hospital bed, I did my best to make him smile. We had learned together that love, smiles, silliness and laughter cross any language barrier. Though he was tired, he did manage a slight smirk that didn’t quite reach his usual smiley, almond eyes.
This dance was still new to us – he was becoming less a stranger, and more my son. He had been home from China one month exactly. There was still much we did not know; his first 11 years of life were relatively obscure.
But we knew we loved him.
The doctors and nurses soon crowded his room to assess him. He wasn’t in critical condition, but the way his blood numbers dropped drastically was concerning. And with a diagnosis of Beta Thalassemia Major being so new to us, we all had much to learn.
One doctor reviewed the labs, discussed the treatment plan, and then took a deep breath and asked me, “Did you know?”
Surprised, I clarified, “About his thalassemia?”
She nodded to give me the confirmation I was seeking. I responded.
“Yes, absolutely. That’s why we adopted him.”
I thought back to nine months prior as my husband and I sat down on the couch with bowls full of ice cream. For a few months, we had been praying fervently for God’s direction in our lives. I had recently returned from a medical missions trip to West Africa and my heart had been absolutely broken by the death I saw daily…. death that could have been prevented with prompt medical care…. death without the knowledge and hope of a God who loved each one dearly.
Since coming home, we had taken missions courses, welcomed international students and dreamed of where we could go with our family to share the love of Jesus. And there, while we least expected it – while sitting on the couch with our bowls of ice cream browsing Facebook – we were given our answer.
First we saw his face, and then we read his story.
His life depended on adoption. As an orphan in China, he was receiving insufficient medical care for his blood disorder and without adoption, his life expectancy was short. Not only did this beautiful 10 year old boy need the love of a family, he needed medical care to sustain his life.
We knew next to nothing about beta thalassemia, but we knew this – he deserved a chance at life.
With great clarity and conviction, my husband stated, “We need to go get him and bring him home.”
This child was to be our son.
We began working fervently to bring him home and prayed that we could get to him before his next birthday. It was a long shot, but we knew our God was mighty. When we received our travel approval seven months later, we were absolutely blown away.
October 31, 2016 would be the day we would first meet this little boy on the other side of the world.
November 1, 2016 was the day we would make him our son and give our family to him.
It was also his 11th birthday.
We have now been home just three months and we are constantly learning – learning about this amazing child who is now our beloved son, and learning so much about his thalassemia and how to care for him. It hasn’t been easy, but we didn’t go into this thinking it would be.
We said “yes” to this little boy and his beta thal because he is worth it.
While there are various forms of thalassemia, our son has beta thalassemia major – the most severe form. Beta thal major is a genetic blood disorder in which the hemoglobin is defective and cannot carry oxygen. Children with this disorder require lifelong blood transfusions and chelation therapy – medications given orally, by infusion in the vein or under the skin (subcutaneous) – to break down the iron that builds up from the frequent transfusions.
Without blood transfusions, thalassemia is a death sentence within the first decade of life. As is quite common with most orphans in China, our son received sporadic blood transfusions, but did not receive any medication to break down the excess iron. In such situations, the iron builds up within the body, destroying organs and ultimately leading to death in the teens.
Being that our son was already 11 when we brought him home, we knew we had a fight ahead. But, in the midst of the fight, there was also such joy to know that he was no longer alone – he now had a family to fight for him and with him, and to provide comfort when he needed it.
What does this journey look like?
When we returned home, our son was seen by hematology right away to be evaluated, to set up a regular schedule for blood transfusions, to initiate chelation therapy, to make referrals to other specialists and to run tests. His cardiac and liver MRI confirmed what we knew to be true – the lack of chelator medications for 11 years had left his tiny body completely overloaded with iron.
We were told his numbers were some of the worst they had ever seen, and they didn’t know how he’d survived.
We praised God for sustaining his life and for this gift of time.
We started regular blood transfusions every two weeks at the hospital and chelation medications at home. Because his stored iron levels were so high, he needed a double dose of oral medication and a subcutaneous medication that ran through a little pump into his body 12 hours a day.
We visited the endocrinologist and cardiologist to do a full work up on our son due to the iron overload and the damage it had caused. His liver and spleen were grossly enlarged, his liver enzymes were elevated, his pituitary was not functioning properly and therefore not allowing our little boy – who is just 50 pounds at 11 years old – to grow, his pancreas was insufficiently secreting insulin, and his heart had a murmur.
But, the beautiful thing about the damage done to these organs is that it is reversible! Had he been left in China, the organ damage would have worsened and quickly lead to the death of our little boy. But now, at home with his family and the medical care he is receiving, the iron is slowly but surely being removed from his organs; the damage is being undone.
We are so grateful for his life.
For kids with thalassemia, the first months home – we have been told and can attest to – are the most intense medically. We are now settling into our new normal as a family, and our new normal with our son’s thalassemia.
We continue daily chelation medication at home both orally and through subcutaneous infusions, and we go to the infusion clinic for blood transfusions every two weeks. Though we hope to extend the time between transfusions in the near future, blood transfusions and chelation medications will be necessary for our son for the rest of his life.
Transfusion days have become a highlight for my son. He proudly marches in and hollers “Hello everyone!” to all the staff he has come to adore and declares that “Iron Man is here!” Yes, the punned nickname my husband gave him has stuck… and he uses it to introduce himself often.
He loves spending the day in the brightly colored, playful environment with his family by his side, a stark contrast to the blank hospital walls he would spend two days in, all alone, receiving a single blood transfusion in China. While he’s being transfused, we do art, play video games, read books and enjoy spending time with the other patients and families who quickly become friends. He loves his transfusion days.
But most of my son’s days are filled with being a regular kid. He eagerly attends school and church and loves learning English. He takes Taekwondo and was so proud to recently earn his gold belt. “Iron Man is so strong!” he told us. He rides bikes and has scooter races with his siblings. He sings loudly and often in the car. He loves playing games – especially winning – nonstop.
He proudly completes his chores every day. He loves having friends over and going to birthday parties. He loves family movie nights and planning our summer road trip. He is bright, energetic, goofy, happy, outgoing and so very friendly.
Though we do sometimes hear complaints about having to take his medication or get “pokies”, he understands that his life depends on it, and he really loves living.
He loves having a family. He loves being loved. He loves being known.
And how thankful we are to know him – to know his laughter, to hear of his fears, to watch his joy and to see him change with the love and care of a family. We are so grateful that we did not miss this incredible opportunity to see God restore life and give hope and joy to this precious child, our son, our little Iron Man.