I must share a letter I sent...

to the television show "The Doctors" after I watched an episode that aired on 10/22/2008 about parenting. I don't know if these people will even read the letter, but I could not just sit by and watch these doctors advise millions of people about a subject they clearly know little about. That subject is cord blood donation, something that I'm (obviously) quite passionate about. I am afraid of what kind of damage that these doctors have done to cord blood donation programs with their unresearched and flippant remarks, and so I do hope that my letter is read and will inspire them to make things right.
Thanks for reading.
xoxo

To whom it may concern:
My name is Sarah Kelly White and I have a 15 month old daughter named Gracie. Gracie was diagnosed at 6 months of age with a rare metabolic storage disorder called Mucopolysaccharidoses (MPS) type 1 – Hurler’s Syndrome. Hurler’s Syndrome is a fatal genetic disorder caused by a defective gene that is responsible for producing an enzyme called AlphaL-Iduronidase which breaks down the mucopolysaccharides. In Hurler’s patients, there is no enzyme being produced and therefore metabolic wastes are being stored in the cells causing them to destroy themselves and most of the patient’s vital organs. Without treatment, children with Hurler’s Syndrome generally die by the age of 10 following a long decline in functioning and severe mental retardation.
Thankfully, there are treatment options for patients with Hurler’s Syndrome. First, there is an artificial enzyme which can be given through IV which will slow or stop the deterioration of the cells and organs, however it cannot cross the Blood/Brain Barrier, so it is not ideal for long term use. The other option is a Stem Cell Transplant using either donated Bone Marrow or donated Umbilical Cord Blood. This is the best treatment going as it can save the patient’s life and also their quality of life. My husband Jim and I chose this option for our daughter, and she underwent a transplant of donated umbilical cord blood on May 8, 2008. As of today she is almost 6 months post-transplant and doing very well.
On the Daddy Boot Camp episode of “The Doctors” which aired on October 22, 2008, an expectant couple posed a question to your panel of physicians about banking cord blood. He specifically asked if they should privately bank their baby’s cord blood for future use or if they should donate it to a public cord blood donation facility. I was shocked and appalled when I heard the responses from Dr. Jim Sears and Dr. Lisa Masterson. They both agreed that this couple should privately bank their baby’s cord blood because public donation sites are few and far between. They then went on to laud the private banking option and stated that it would be “worth millions” if they should need it later.
I sat stunned for a minute in disbelief that this panel of doctors who were chosen to give medical advice to millions of people via television would give such irresponsible and inaccurate information. According to the website for the National Marrow Donor Program (www.marrow.org), there are hospitals in at least 20 states who offer expectant mothers the option of donating cord blood. While it’s not offered everywhere, it is offered in more than just “a few places” which is what Dr. Masterson said on the air. If the mother’s chosen birthing hospital is not listed, they can contact Cryobanks International who accepts donated cord blood from anywhere in the continental U.S. to be listed on the NMDP registry.
Private Cord Blood Banking is expensive and in most cases, it’s useless to the family who is paying to bank it. The AAP states that the chances of a child needing his or her own cord blood stem cells in the future are estimated to range from one in 1,000 to one in 200,000. Private cord blood banks target parents at an emotionally vulnerable time when the reality is most conditions that can currently be helped or cured by cord blood stem cells are treated by providing a necessary component from the donor stem cells which is lacking in the patient's own cells--for which a patient's own cord blood would be useless.
The American Academy of Pediatrics, of which Dr. Sears is a member, has publicly stated that they encourage the donation of umbilical cord blood for public use. The AAP openly discourages private cord blood banking unless there is knowledge of a full sibling in the family with a medical condition (malignant or genetic) who could potentially benefit from cord blood transplantation. http://www.aap.org/advocacy/releases/jan07cordbloodfaq.htm
The American College of Obstetricians and Gynecologists has also publicly stated that OBGYN’s should be advising patients of the option of cord blood donation and giving them accurate information regarding the usage of privately banked umbilical cord blood and the very slim chance that the banked blood will actually be used for that child or a sibling.
http://www.acog.org/from_home/publications/press_releases/nr02-01-08-2.cfm

Both the American Medical Association and the American Society for Blood and Marrow Transplantation have also made similar public statements advising physicians to encourage expectant parents to donate their cord blood to a public bank as opposed to privately banking it.
Considering all of the public statements from these highly respected organizations and the availability of all of this information on the internet, I find myself wondering how Dr. Sears and Dr. Masterson could give the couple on the show these recommendations in good conscience.
The basic fact is that these doctors have now provided the Cord Blood Donation Program with yet another hurdle to overcome. Considering the wide scope of the potential viewing audience, Dr. Sears and Dr. Masterson have told millions of people that it’s just not worth it to donate your cord blood to someone else who needs it. For parents like my husband and me, the implications of this type of attitude and carelessness are grave. The irresponsible and ignorant remarks that were made by these doctors may have cost hopeful families that “perfect” or even “good enough” cord blood match that their child so desperately needs to live. And just like anything else, as the demand for these centers increases, more will become available to meet the demand which will offer even more people the opportunity to donate their cord blood.
I hope that those who receive this letter will do the truly right and responsible thing and rectify this situation by any means necessary.

Copied to:
Dr. Jim Sears, The Doctors
Dr. Lisa Masterson, The Doctors
Dr. Phil McGraw, Executive Producer , The Doctors
Dr. John Wagner, Head of Pediatric Stem Cell Transplantation, University of Minnesota
Dr. Paul Orchard, Medical Director, Inherited Metabolic and Storage Disease Blood and Marrow Transplantation Program, University of Minnesota
Posted publicly on http://graciewhite.blogspot.com/