Cord Blood Transfusion

In all the hours of research I have done since finding out about Emily’s diagnosis, the best thing I’ve found is a cord blood transfusion study currently being done at Duke by Dr. Kurtzburg.  I found out about the study through blogs of other families going through what we are going through.  There have been families that have traveled from all over to Duke to get this procedure done.  Basically, the procedure involves using the child’s own cord blood that was collected at birth to re-infuse back into their body.  The study determines whether this is beneficial in regenerating brain tissue growth and/or repairing the damage that the pressure of the fluid caused on the brain while in utero.  Since there are no studies like this published, there isn’t a way to say “yes this definitely helps make a difference.”  Also, since the prognosis isn’t directly correlated with how severe the hydrocephalus is, there’s no sure way to determine if the stem cells from the cord blood are the sole reason for a better outcome.  However, the results have been promising and parents have raved about it and  sworn that it made a huge difference for their child.  Stem cells are pretty amazing little things.  They can form into any type of cell, and replace damaged cells wherever they may be needed in the body. Bryan and I are firm believers that this could help our daughter. 

Our team of doctors and the team responsible for the study are on board, so Emily’s cord blood will be collected during her delivery, stored at Duke and she will have her first cord blood transfusion while she is still in the NICU, after she recovers from the shunt surgery, probably about 4-5 days afterwards.  Then, depending on her particular situation, she might have more transfusions a few months later.  It will be determined after she is born, but we are guessing anywhere from 3-6 transfusions.  The only problem is the cost.  Our best case scenario, oddly enough, is that our insurance denies it (which will probably happen since it is considered experimental), then Duke offers a discount through the study which makes the entire procedure about $4,000 (it is normally $11,000).  Regardless of the cost, we want to give Emily the best chance at life that we can.  It feels good to finally have something we can do to help Emily, instead of the "wait-and-see."

Here are some links that have more information about cord blood and hydrocephalus in general:

http://fetalhydrocephalus.com/hydro/Default.aspx - This website has been by-far the most helpful in learning about hydrocephalus.  I highly recommend checking this out.


http://www.today.com/id/21134540/vp/23569985#23569985

http://www.foxnews.com/health/2014/01/13/did-cord-blood-banking-save-this-baby-from-brain-damage/

http://www.charlottemagazine.com/Charlotte-Magazine/July-2013/Beating-the-Odds/ - The 2nd story is about congenital hydrocephalus.