Just a quick update on Charlie's preparations for Craniofacial surgery on August 9th. Charlie will be receiving weekly injections of Procrit for the month leading up to his surgery. What is Procrit and why does Charlie need it? Charlie's surgeon, Dr Fearon, is happy to answer that question.
From Dr. Fearon:
Almost all children undergoing skull-remodeling surgery require blood transfusions. Studies have shown that the average amount of blood lost during craniosynostosis repairs can be equal to the child’s total blood volume, and that they need blood to replace this loss. There are no good studies that tell us the risk of a child not surviving this type of surgery, but it is my impression that this risk of not surviving is probably less than 1 in 300 operations. The most common cause of death is because of too much blood loss.
Procrit is a drug, which is given by injection, which stimulates the body to make more red blood cells. It has been used by many surgeons to increase the amount of red blood cells in their patients before any operation that a large amount of blood loss would be expected. After receiving this drug, there are more red blood cells in an infant’s body before surgery begins. If two babies have the same operation and lose exactly the same amount of blood, but one baby started out with more red blood cells, then that child would have more at the end of the operation.
In 2002, I co-authored a study that concluded that those children who received Procrit (human recombinant erythropoietin) before surgery only required blood transfusions about half the time, whereas those children who did not receive Procrit had an almost 100% transfusion rate. There are risks associated with giving blood transfusions. Most parents worry about their child getting HIV, or AIDS, from a transfusion. Actually, the risk of this is extremely low (from 1 in 400,000 to 1 in a million). The risks of Hepatitis are far greater, being about 1 in 15,000. The most common risk of getting a blood transfusion is having a reaction called Transfusion Related Lung Injury (TRALI). This is estimated to occur in about 1 in 5,000 transfusions (with a death rate of 5-10%). In addition, there are studies that have suggested that the surgical infection risk may be lower in those who do not receive a blood transfusion (the theory is that getting someone else’s blood lowers the immune system). Finally, I believe that starting an operation with a higher blood level places a safety net under my patients that lowers the risk of not surviving the operation.
Initially, Blue Cross Blue Shield refused to cover the cost of Charlie's Procrit perscription - a hefty $1,095.00. But after a short battle, spearheaded by Dr. Fearon's office, Charlie's insurance company agreed to pay 70 % of the cost. These are the kinds of details that Charlie's family must deal with every day. We are therefore so grateful that Charlie has a wonderful team of medical professionals willing to help him navigate the system.
Thank you to everyone who continues to keep Charlie in their prayers and thoughts as he gears up for this incredible surgery. We all know that a child as small as Charlie shouldn't have to endure this kind of medical intervention. But with our love and support sweet Charlie and his family will overcome this enormous challenge.
