A monthly hospital trip for a blood transfusion that can take nearly the entire day?
This is just part of life for a child growing up with thalassemia, a rare, genetic blood disorder in which bodies are unable to make life-sustaining hemoglobin. Hemoglobin is a protein that carries oxygen to the body’s organs.
Katie Baron and Rabecca Wachter are both mothers of adopted children who have beta thalassemia major, and have become close throughout their journey. So close, in fact, that it’s almost as if two blended families have merged into one.
Katie’s daughter, Antonela, is 12 years old and adopted from Albania nearly six years ago. Rabecca’s children Drew and Ayla are both 4 years old and adopted from China not too long ago with the same condition.
Katie, mother of five, and Rabecca, mother of seven, say they are friends for life and parents for life, too.
“We see each other at the hematology clinic at Helen DeVos Children’s Hospital and our families have become quite close,” Katie said. “We provide major support for each other as our children are part of a small population with this rare condition and we must look out for one another. It’s what friends are for.”
Stepping up, offering love and care
Nearly all children with thalassemia are adopted as this condition typically does not originate in the United States and the condition is degenerative. As these children grow and mature, their body systems deteriorate.
“My 4-year-old has bone and neck pain already,” Rabecca said. “And side effects of the treatment include iron overload, which can lead to organ failure.”
Not that many years ago life expectancy for thalassemia was 30 years of age. With treatment, patients are now reaching 40 to 60 years old.
She said the parents in these situations are often providing life-saving therapy for these children and that thalassemia major is extremely rare—estimated to occur in 1 in 100,000 children worldwide, but due to genetics it occurs in areas of the Mediterranean much more commonly (1 in 10,000).
“These two families provide exceptionally wonderful care for these children,” she said. “We see families support each other in a very helpful, supportive, empathetic way—both in children with chronic conditions, like thalassemia and in childhood cancer situations. I’m just so grateful for committed, loving and perseverant parents such as Katie and Rabecca.”
Quality of life can be tough at times, and the burden on parents can be just as difficult. Both Katie and Rabecca make sure these kiddos receive the best treatment, giving them the best chance at a healthy life in the future.
“We did not feel that we had a choice in these adoptions,” Katie said. “How can you learn that there is a child who needs help and not step forward? It’s hard for me to wrap my mind around this when people ask how I chose to adopt a child with this condition. We have taken these children in as our own and continue to provide them with the love and support they need. It was not a choice.”
In China, 80 percent of children with this condition die by age 5.
When you are an adopting parent, the two women say, you know you are giving a child a chance at a better life. But when you have a child who had absolutely no chance in their home country, it brings so much more meaning and purpose.
A life-long commitment to worry
Rabecca said the hardest part of raising children with thalassemia is that her kids look healthy. Everyone assumes that the walk they are taking in life is easy.
But the truth of the matter is it’s not. It’s complicated and difficult. And there really isn’t a way to take a break from it.
“My daughter will always struggle with bone pain and fatigue and will need to continue with regular blood transfusions for her entire life,” Rabecca shared while the families enjoyed a picnic on a sunny summertime day.
“I can’t help but wonder what it’s going to be like for her when she grows up and is away at college,” she added. “Will she be able to manage her condition and keep up with the other students? What kind of job is she going to be able to have with pain and headaches? It’s the big picture stuff that I’m always thinking about as a parent with a child who has this condition.”
Katie tries not to let this condition define her daughter.
“She’s at an age where she doesn’t need to be different, and we don’t want this to become her identity,” she said. “When she is an adult, we will leave it up to her if she would like to be active in fundraising for the cause or leading blood drives. But for now, we strive to live as normal of a life as possible.”
Antonela is in seventh grade at Calvary Christian and last year was her first year in an actual school. She said making friends is her favorite part of school and she’s earned the position of MVP on the soccer team playing left forward.
She has had some setbacks and challenges from her condition—dizziness and fatigue while playing—but is one determined young lady and loves the game.
She wants to be an ambassador for adoption when she gets older and hopes to spread the word that not all older kids who are up for adoption are dysfunctional. She also hopes to visit her grandmother in Albania someday and keeps in touch via email.
All the kids on this particular day play together and, indeed, do look like every other child as they eat freshly made cotton candy, play games in the grass and enjoy a picnic with friends and family.
“It takes a lot of energy to do this,” Katie said, a watchful eye on the children at play. “I’ve learned through this experience that parenting a child whose life literally depends on you brings tremendous meaning and purpose to life. It’s a high that never fades.”