Dr. Kanter, Christopher, Kathy (TRTP President)
Sure, that may be an odd title for an update, but the news is wonderful! If you've been following our care of little Christopher from Haiti, you already know that at a very young age he was diagnosed with sickle cell disease in his home country. The Red Thread Promise has been supporting his medical care for almost 3 years as he waited for his adoption to an American family to be complete. Thankfully, the wait is over!
In January, Christopher was finally issued his passport and came to the US to be with 8 new siblings (4 adopted from Haiti as well) and 2 loving parents. And, true to our word, we continued to support his care for the disease by arranging for him to be seen by sickle cell specialist, Dr. Julie Kanter in New Orleans, Louisiana.
On March 10, The Red Thread converged on the pediatric unit at Tulane Hospital for Children and the Sickle Cell Center of Southern Louisiana. And there he was, Christopher, on US soil! It was a beautiful moment that we had waited so long for—in his mother's arms, watching classic cartoons in the waiting room.
We were ushered into an exam room and met by very friendly social workers and Dr. Kanter. She explained everything that would happen that afternoon: blood tests, pathology, a "sickle cell 101" session, etc. We discussed Christopher's current health and reviewed what we knew of his care and treatment in Haiti. Following our appointment, Dr. Kanter would review his labs and determine the kind of sickle cell he has, make referrals for specialists closer to the family's home, and develop a long-term treatment plan.
The next morning we returned for the follow up and Dr. Kanter delivered the best news that we could have hoped for: based on extensive blood work and tests, Christopher does not have sickle cell disease! However, she did determine that he does have sickle cell trait, the genetic code for passing on the disease. After the jumping for joy and dancing concluded, we asked Dr. Kanter two key questions:
- How did this misdiagnosis happen?
- What does this mean to Christopher?
Dr. Kanter suspects that a single test was done by the Haitian doctors to form their opinion. She explained that this particular test is by far the least expensive and that it will indeed pick up any trace of sickle cell. However, Dr. Kanter explained that the test does not distinguish between sickle cell disease and sickle cell trait, a critical distinction. Unless the hospital did further testing—like what was done in Louisiana—the doctors incorrectly concluded that he has the disease. We are unsure if this additional testing is even available in Haiti. However, we learned valuable information about sickle cell disease and trait that will help us in our support of the next child. And, the news is positive for other orphans suspected of having this painful disease—blood can be drawn on the child in question and brought to the US to complete the test and get conclusive results.
For Christopher this means that he won't have to be on penicillin and folic acid for the rest of his life or undergo yearly testing to detect his propensity for strokes. He won’t have painful episodes that often lead to hospitalization and blood transfusions. Since he has sickle cell trait, it does mean there is a 25% chance that he will pass along the trait or the disease to his children.
We couldn't be more thrilled with 3 years of work on behalf of this one precious child:
- We helped connect him to his beautiful family in the US.
- With extensive testing, we determined that he doesn't have a critical painful disease, avoiding a life-time of unnecessary treatment.
- As Christopher grows, he will know that he was and is loved not only by his birth and adoptive families, but by all of you who have supported him in his life journey.
Together, we did for him what we would do for our own child: get testing done, get second opinions and explore all options for treatment. We rest assured that our love for every child knows no boundaries, in sickness and in health. And we are thankful for your support.
The best news ever!
Christopher and Mama
A long-time supporter