Monday, March 12, 2012

Who Dat Doctor!

Dr. Kanter, Christopher and Kathy

We’ll tell you who dat doctor – it’s Dr. Julie Kanter from Tulane Hospital for Children and the Sickle Cell Center of Southern Louisiana. She delivered the best news today that we could have hoped for:  based on extensive blood work and tests performed in New Orleans, Christopher does not have sickle cell disease! 

One happy father and son!

However, Tulane has determined that he does have sickle cell trait, which is common to 1 in 10 people of African descent across the globe.

So, after the jumping for joy and dancing concluded, we asked Dr. Kanter a few key questions:
  • How did this misdiagnosis happen? 
  • What does this mean to Christopher in the future? 
  • How can we ensure that another child isn’t misdiagnosed?
How did this misdiagnosis happen? 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, the doctors incorrectly concluded that he has the disease. We are unsure if this additional testing is available in Haiti. However, the news is still positive for others 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. 

What does this mean to Christopher? It means he WON’T have to be on penicillin and folic acid for the rest of his life. He won’t have to 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 does have sickle cell trait, it DOES mean there is a 25% chance that he will pass along the trait or the disease to his children. It also means the he should have his spouse tested. If she has the disease or the trait, it drastically increases their chance of having a child with sickle cell. Christopher will see a sickle cell specialist in his teens for further testing and counseling in these matters. 

What does it mean to other children? When children receive a positive diagnosis for sickle cell, adoptive parents, caregivers and orphanage directors can request additional tests to confirm the diagnosis, avoiding unnecessary, costly and intrusive medical intervention.

 The Tulane team

We want to thank everyone—in Haiti, the US, Saudi Arabia and Canada—for their support of this child. Everyone played a critical part in Christopher’s life—from thoughts and prayers to financial support to medical treatment. Now he is in the loving arms of his forever family and to them we say, “Take care of our boy that we have loved for the past 3 years. He will be in our hearts forever.”

1 comment:

Sabrina Craig said...

Given the lack of further testing of that hospital in Haiti, it's not surprising that there was a risk of misdiagnosis. Well, this is great news for all of you! It means Christopher doesn’t have to go through such troublesome medication all his life. I hope everything will continue to be great, with regard to his wellness. Good day!

Sabrina Craig @ The Law Offices of Joseph M. Lichtenstein