Sharing Their Joy: A Family of Nine’s Adoption Story
November 1, 2017 – CAF is proud to celebrate National Adoption Month throughout the month of November. Our goals are to bring attention to the need for permanent families for children with thalassemia both in the U.S. and globally, to provide the greater community with resources and information on thalassemia adoption, and to share the stories and perspectives of adoptive families. CAF thanks the Joy family for sharing their story with the community. We hope you are inspired by their journey!
Could you tell us a little about yourself and your family?
We are a family of 9 living in southern California, Chad is a federal employee and I (Liberty) am a registered nurse. Chad and I met in college. We have 7 children total, ranging from 2 years all the way up to 19. Of our 7 children, 4 are adopted, and 2 have beta thalassemia major.
When did you decide that adoption was right for your family? What made you make this decision?
Chad and I discussed adoption before we got married, we knew it was something we wanted to pursue in the future. I grew up with a brother who was adopted as a baby and always had adoption on my heart. We were blessed in 2005 to be able to adopt our son Samuel through an open adoption situation in the US. We later went on to be foster care parents in 2011 and 2012. In 2012 we decided to pursue international adoption through the China Special Needs Program and adopted three children through this process, including our two children who have beta thalassemia major.
How did you learn about thalassemia?
Children who are available for adoption through the China Special Needs Program have medical files providing basic information for families to decide whether they would like to pursue their adoption. In February of 2013, our adoption agency sent us the file for a precious little one year old boy whose special need was listed as thalassemia. At that point we knew only the basics of the disease and truly did not know what life would entail if we adopted him, and we had a very short 72 hours to research, pray, and decide whether he was to become our son.
I began furiously looking into anything thalassemia related and stumbled upon a Yahoo group titled “AdoptingThalassemia” which referred me to the Cooley’s Anemia Foundation website and to another thalassemia adoption support group on Facebook . I read every single thing on the CAF website and found the map of the US which shares the contact information for selected thalassemia centers. I immediately zeroed in to the center at Children’s Hospital of Los Angeles (CHLA) since it is near where we live. I contacted Sue Carson, the nurse practitioner who oversees the thalassemia program, and sent her the medical file we had received. Sue was very generous in carefully reviewing the medical information with me, spending well over an hour explaining the pathophysiology of thalassemia, what treatment would look like, what the complications of the disease might be, and what we could expect. After this conversation we felt educated enough to make an informed decision. We decided to move forward with submitting a letter of intent to adopt this adorable little guy, and make him our son and name him Daniel! I have told Sue more than once that the hour she spent on the phone with me in February 2013 is why Daniel is our son today, we truly owe so much to her.
After making the commitment to adopt him, we had 5 months from the time we locked Daniel’s file until we were able to travel to complete his adoption in China in July of 2013. During that time, I continued to research and learn as much as I could. One of the main platforms through which I was educated is a group on Facebook called, “Adoptive Parents of Children with Thalassemia.” The learning curve was steep, but through this group I felt like I began to truly understand and could anticipate what life would look like for us. Daniel came home July of 2013 at the age of 16 months, he is now 5 and is doing so well. He is healthy, thriving, and adds quite a bit of volume to our household.
During the time leading up to Daniel coming home I was deeply saddened to learn about the plight of the orphan with thalassemia in China. I learned of the desperation parents in China feel when they are unable to provide medically for their children who have thalassemia. I came to realize that these parents face the unbelievable decision no one should ever have to make: to keep their child and watch them die, or to abandon them with the hope that they are saving their life by allowing the government to care for their medical needs. I learned that once these children are orphaned they receive very basic medical care which keeps them alive, but definitely not what we would consider optimal in the US. Children with thalassemia who are orphans in China are generally not transfused unless their hemoglobin is less than 6, at which point they receive whole blood. Daniel had a hemoglobin level of 2.4 in his medical papers, and this seems to be a common occurrence among the orphan population. Additionally, there is very limited access to chelation and most children have severe iron overload. Sadly, the average life expectancy for these children as orphans is very grim; most do not make it past their teenage years. Adoption provides a family for these children and the opportunity to receive the medical care they need to live a long life.
In late 2015, we learned of a tiny little girl who also had thalassemia who was available for adoption. We prayed about adding her to our family and decided that she would be the sweet little cherry on top of our already bustling family. We realized that we already had one of the best thalassemia experts in the U.S. caring for Daniel, Dr. Thomas Coates at CHLA. We were already going for a transfusion every 3 weeks, we already had built up a good amount of knowledge about the disease, we had adequate medical insurance, we could provide her with life-saving medical care, and most importantly, we could make her our daughter. Our sweet Ava came home in August of 2016 at 13 months of age and has been our little boss ever since.
Tell us a bit about your road to adoption. How long was the process? What were some of the challenges you faced?
Our adoption of Daniel was 12 months long and Ava’s was 8 months long. The mountains of paperwork are definitely a challenge, but nothing that cannot be overcome. The biggest challenge of all for me was definitely the wait, knowing that this child was mine, and not being able to go get them immediately was so hard.
What were the biggest questions, concerns and fears you had about adopting a child with thalassemia?
At first one of the biggest fears was how spending a day at the hospital every 3 weeks would impact our family and our older children, and how it would logistically work. Four years in I can say that it took some adjusting, but we have found a routine and make it work well for our family.
How did you find answers to your questions about adopting a child with thalassemia?
We relied heavily on other parents who were already parenting children with thalassemia to answer our questions. The support groups on Facebook were the main platform we used to seek information.
What are the greatest joys of being an adoptive parent to a child with thalassemia? What are the biggest challenges?
We have found that parenting a child with thalassemia is truly not different than parenting any of our other children. Thalassemia has become a part of who we are and what we do. The biggest challenges we have in parenting our adopted children has little to do with thalassemia, but rather with the early childhood trauma they suffered due to being orphaned. The treatment for thalassemia is straightforward and fairly clear; however, helping a child with abandonment scars, early neglect, and attachment issues is not as simple. Regardless of the struggles we have overcome and continue to face, we feel blessed to be parents to such a fabulous bunch. One of the greatest joys of our lives has been to watch the transformation which has taken place in the lives of our children adopted from China. Not only in seeing their bodies gain weight, and their livers and spleens shrinking to normal size, but also the way in which they have firmly established themselves within our family.
How did you learn about Cooley’s Anemia Foundation, and what makes you support CAF?
We initially heard about CAF while researching thalassemia and found the information very simple to understand and helpful. We love the support we receive through CAF in gaining the best current knowledge, being able to attend the family conferences, and knowing that someone has our back should we need any assistance or have any questions.
What advice do you have for individuals who would like to adopt a child with thalassemia?
Go for it! We have found it to be very rewarding to add two children with thalassemia to our family, they are healthy and thriving, and they are an integral part of who we are. We feel so blessed to have been adopted into the thalassemia community and to be able to provide our children with the medical care they need. The thalassemia community is so special and we feel fortunate to be a part of it.
Is there anything else you would like to share with the community?
Due to the rarity of thalassemia in the U.S., I think it is very important for anyone who is considering adopting a child with thalassemia to commit to taking their child to one of the top thalassemia centers in the country. This would ideally happen at least once a year and makes such a difference in ensuring the best possible care for our children. Seeing a thalassemia expert makes a huge impact in following current practice methods and obtaining the best possible outcomes.
Check the CAF website throughout November for interviews with adoptive families, FAQ’s about adoption, and resources available to those going through the process of adopting a child. For more information, visit this link.