Stephen’s Story
While in utero, Stephen Bartage was diagnosed with Truncus Arteriosis, a heart defect that would require surgical correction weeks after birth. While undergoing his heart surgery, doctors noticed Stephen was missing a thymus gland. After running many tests, my husband Ben and I received some heartbreaking news: Stephen was diagnosed with Complete DiGeorge syndrome - also known as 22q chromosome deletion. The hospital contacted Duke University - the only center in the U.S. where thymus transplant procedures are performed. We were placed on the waiting list for the thymus transplant. We were informed that the waiting period would be around 2 years. This seemed like a very long time to wait, because the doctors told us that Stephen was at great risk of getting sick, and that an illness that other children could overcome might end Stephen’s life.
After getting home from the hospital and finally settling in, I did some more research on everything that was told to us during our hospital stay. I joined a Facebook group for families with children waiting for the transplant or that have already undergone the surgery. We learned that there is another hospital in the UK (GOSH Children’s Hospital in London) that performs thymus transplant surgeries, and there was little to no wait time there. Since the surgery would take place outside of the U.S. , our insurance would not cover any of the medical costs. My husband and I knew that it would be very expensive but we did not let that discourage us. We had to try. We contacted Dr. Graham Davies and sent him all of Stephen’s medical records. We started a GoFundMe page to help raise the expenses needed for the cost of surgery and the stay in the hospital. We also hosted a yard sale in Stephen’s name. We were blown away by the generosity of friends, family, and complete strangers who were touched by Stephen’s story and our resolve to do everything we could for our son. We are blown away by the goodness in humanity and of course, the goodness of God.
We were instructed to send a blood sample to the GOSH Hospital in London before finalizing travel plans. Two weeks, later we received an email from Dr. Davies. To his surprise - and certainly ours - Stephen’s blood sample showed T-cells for the first time! They had tested for T-cells twice before and the numbers were near zero. The doctors in London told us they believed that Stephen has a partial thymus, and that it may have taken some time for his T-cells to begin emerging. We know Stephen did not have a thymus behind his breastbone (the normal location for the thymus gland), because they looked there during his heart surgery. We also know he did not have any T-cells and the few T-cells he did have were not functioning. We believe God did performed a miracle for our son. We were shocked to receive the great news from Dr. Davies, and subsequent tests have confirmed that Stephen does have T-cells. His numbers are improving and our fears about his immunosuppression are waning with this wonderful improvement.
This shocking news brought many questions but also a big relief. To us this was a miracle that only our Heavenly Father could do. Stephen no longer needs the thymus transplant! We are so thankful, but our experience has opened our eyes to so many families in need. We want to show gratitude to God by creating a charity that helps those families in need of this treatment. We have applied donations we received for Stephen toward this new charity. Many of Stephen’s donors chose to forward their donations on to this cause rather than receive a refund. We are grateful for everyone who has been involved in Stephen’s journey. Thank you from the bottom of our hearts. You all are angels. May God Bless you ! We look forward to a long, happy, and bright future for Stephen, and look forward to helping families in need with the seed that has been planted. We believe God will make it fruitful.
-Stephanie Bartage
