“A Wonderful Journey” – Tracy Antonelli Talks About Adopting Children with Thalassemia
February 24, 2015 – Tracy Antonelli, an individual with thalassemia, and her husband have adopted three children from China over the past several years. Like Tracy, her adorable daughters have thalassemia. Below, CAF talks with Tracy about her experiences in going through the process of adopting children from another country.
CAF: Tell us a little about the girls you have adopted and about what your family life is like.
Tracy: My husband Patrick and I have adopted three girls from China with beta thalassemia major.
Our first daughter, Emmilene, is five years old. She is from Guangxi, China. We adopted her in 2012 when she was 26 months old. She is in pre-K now. She enjoys dancing, reading, cooking, dressing up, and going to the playground. She is smart, loving, loyal, and compassionate.
Our second daughter, Rosalie, is 4 years old. She is from Guangdong, China. We adopted her in 2013 when she was 29 months old. She enjoys music and playing instruments. She likes to pretend she is a superhero and a firefighter. She is silly, bright, tender, and cuddly.
Our third daughter, Francesca, is 17 months old. She is from Guangxi, China and we just met her in December 2014. We have not known her very long, but she is a happy little baby. She enjoys dancing, pretend cooking, using crayons, and eating. She is a great imitator and likes raspberries on her belly.
Our family life is fun, busy, stressful, and fulfilling. We have a lot of medical commitments, but we have many more fun things that we do as a family. Before adopting Emmie, I spent my entire career in the field of clinical research. Now I am a stay at home mother, and as much as I love it, I think it’s much harder than running clinical trials! My husband is the Director of Corporate Compliance at a medical device company. We spend as much time as possible together as a family, building lasting bonds and creating wonderful memories. We all love to take vacations to warm places and spend time at the beach, but also enjoy playing together at home and taking daytrips around New England. Our family takes part in cultural activities, including Italian feasts in the North End of Boston and Chinese celebrations in Chinatown. We love being an American-Italian-Irish-Chinese family!
What motivated you to adopt your children? How much time went into pondering this move before you decided to pursue adoption of your daughters?
The main motivator for adopting our daughters was my having beta thalassemia intermedia. For us, the only way we wanted to have a family was through adoption. Having a child who shares our DNA doesn’t matter to us. Giving a family to someone who needs one trumps everything else.
When I was very young, I knew that I wanted to adopt a little girl from China. Stories of baby girls being abandoned because of the one-child policy made a strong impact on me. I grew up, got married to a wonderful man, and we spent 9 years having “the longest honeymoon ever,” rarely even thinking about starting a family. But then I learned that the climate in Chinese adoption had changed; the problem was not as much about healthy, baby girls being abandoned, but more about orphanages overflowing with girls and boys with special needs. When I learned that one of these needs was thalassemia, I knew that one day we would be parents to a little girl from China with thalassemia. I am so fortunate to have a husband who was supportive of this dream and just as excited about creating a family through adoption as I was. It was one of the easiest decisions we have ever made.
When you were exploring this adoption, how did you gather the information to make your decision?
When you are pursuing an international adoption, you can review files of children you are interested in adopting. The files have information about the child’s medical condition, developmental milestones, living conditions, and abandonment. The files vary greatly in terms of the amount of information they include. You can also request additional information from your child’s orphanage through your agency. The information prospective parents receive is often spotty and not always correct. For our adoptions, we gathered as much medical information as possible and had it reviewed by our hematologist. If you do not know a hematologist, you can contact CAF (800-522-7222; Eileen.firstname.lastname@example.org) and they will help you get your file reviewed. No physician is going to make any promises or concrete diagnoses based on the information obtained from the orphanage. With thalassemia, the doctors will often say that it “looks” like beta thal, and that the prospective parents should be prepared for it to be beta thal major, requiring transfusions. Even if there are genetic testing results in the file, children will always have extensive testing redone when they arrive home. With any adoption, you also have to be ready for other undiagnosed/undisclosed medical or psychological issues.
What is the process of adopting a child from China like? Do you know if the experience/process is different when adopting a child with thalassemia as compared to one who does not have thalassemia?
The process for adopting a special needs child from China is the same no matter what the diagnosis is. The difference is that because thalassemia is a life-threatening illness (especially if it is not treated properly), parts of the adoption process can be expedited. You can never skip any steps, but with some extra effort, you can speed a few of them up. During this process we had to do a lot of advocating on our daughters’ behalf to get them home quickly. It is like your first test at being a strong advocate for your child, which is something you have to be very good at when you have a child with a complicated medical condition.
Especially in the south of China, there is often a blood shortage, where blood is rationed or not given at all. Children living in orphanages are often under-transfused. Older children may not be chelated properly. Overall their general medical care is not what it would be in the United States. From the records we received when we met our daughters, we know that they were not being transfused properly, receiving sub-optimal amounts of blood, and not necessarily on the correct schedule. Each of them had hemoglobin levels that were dangerously low. For instance, we learned that Francesca was receiving only small amounts of blood every other month, just enough blood to get by. She came home with a hemoglobin in the 5s. While Emmie was in China, she frequently had hemoglobin levels in the 3-6 range. She would spend a week in the hospital to get a transfusion, because she would often have to stay there and wait for a unit of blood to become available. Rosie’s hemoglobin once fell to 1.8 while in her orphanage, which could have been deadly. Being this undertreated may not be the norm, but it is fairly common to hear stories of children in Chinese orphanages living like this. It is very scary. For all of these reasons, most of the players from the adoption agencies to the US government to the China Center for Children’s Welfare and Adoption are cooperative when it comes to expediting children with thalassemia.
Now that they are home, they are being transfused adequately, chelated properly, and receiving all of the other specialized comprehensive care that patients in the US like me are so fortunate to have access to.
As a person with thalassemia, are there any particular challenges you encounter in terms of your parenting?
I do not think having thalassemia myself is a hindrance in terms of parenting my daughters. The opposite is true, at least from a medical/thalassemia standpoint. I feel that I am able to relate to my daughters’ thalassemia on a very “real” level. I am able to empathize with them. I remember having to endure lots and lots of blood tests and medical “stuff” as a child. I recall feeling “different” because of thalassemia. While I was not chronically transfused as a child, I have had transfusions as an adult, so I know what that is like. I know what it is like to be on Desferal. I know what it is like to take Exjade. I know what it is like to have a Ferriscan. I know what it is like to have a chronic illness. But I also know that it is very important to remember that thalassemia is only a very small part of who I am, and I hope my daughters grow up feeling the same way.
The only time there has been a scheduling difficulty was when I happened to need a transfusion when my daughter needed one. We were able to go together (sort of a mother/daughter transfusion day, which was great!), but my husband had to come with us because I could not be the adult responsible for my daughter while I was being transfused (which makes perfect sense.)
How have the girls adapted to their new lives?
It is amazing how well adjusted our girls are. Even Frannie, who has only been with us for two months, is settling in and adjusting very well. It is truly amazing how strong our children are. They have each had their lives turned upside down, yet they are so resilient that they are able to eventually settle in to a whole new life. The adjustment period is not easy, and each child has to experience the transition in their own way. Our children experienced many losses in their young lives and needed to have the freedom to grieve before they could move forward. We just support them and love them as hard as we can to help them through the very hard times. We are so lucky that eventually they each opened their little hearts to us. They were sad, confused, and scared when we first met them. Now they are joyful, spirited, and so full of happiness. We are so lucky to have them.
What advice do you have for anyone who is considering adopting a child with thalassemia from China?
My best advice to anyone considering adopting a child with thalassemia from China is to become as informed as possible about the disorder and its treatment. Talk to the Cooley’s Anemia Foundation (800-522-7222; Eileen.email@example.com) and get in touch with a hematologist. Contact other families who have children with thalassemia (adopted or biological) to understand what “real life” with thalassemia is like. Find out what your health insurance will cover. If you are looking at files of children with thalassemia, no matter what it says, be prepared for the child to be transfusion dependent. They may not be, but that is what you should prepare yourself for. Line up your medical care team and have a very strong support network ready for you when you return home. Adoption is the most wonderful thing in the world, but just like other worthwhile endeavors in life, it is not easy.
What else would you like to tell us/share about your family, your life, the adoption process, etc.?
There have been times in my life when I have felt unhappy that I have thalassemia. Now, I am certain that being born with thalassemia was the absolute best thing that ever happened to me, because it put me on this wonderful journey to my daughters. I feel like the luckiest woman alive! I am so happy that having thalassemia is something that we are able to share. I am able to really understand what they are going through, because I have gone through it, too. But the most important thing is that we are all just a regular family who enjoys the beach and the movie “Frozen” and baking cookies and having dance parties. Thalassemia may be one of the things that brought us together, but it is only a very small part of who we are.
CAF thanks Tracy for sharing her story with us. If you are interested in reading more about Tracy’s family and their journey to adoption, you can read more at http://www.linguineorlomein.blogspot.com .