Decisions, Decisions … Cord Blood Banking and the University of Florida Study

I posted a while back about my struggles with the decision about whether to bank my son’s cord blood. My doctor did give me the information he promised, and I have been researching like crazy.

During my research, I stumbled upon one small study that was performed at the University of Florida in 2007. You can read about the study here.

In the study, seven recently diagnosed children between the ages of two and seven were infused with their own cord blood and then their outcomes were compared with 13 children with similar ages and disease durations who received traditional treatment.

After six months, the children who received the transfusions had lower average A1Cs (7% compared to 8.04% in the control group), and they required significantly less insulin per kilogram of body weight. They also had about the same C-peptide levels after the six months as they did at the beginning of the study. This indicates that their beta cells might be living longer and continuing to produce insulin. However, the study did not indicate how their C-peptide levels compared to the levels in the control group.

The conclusion from the study was that cord blood infusion might be useful in newly diagnosed children because it can slow down the progression of the disease, which can lead to tighter control and reduce or prevent the resulting complications.

Of course, this conclusion was determined after just six months. Who knows how these children are doing today, nearly three years later? I looked for an update online, but could not find anything. I did hear from the father of a participant in the study on TuDiabetes, who says his son is still in the “honeymoon phase” after three years. He does admit that his son was one of the better performers in the study. You can read this father’s opinion here.

The report goes on to conclude that it is cost-prohibitive to bank the cord blood of all potential type 1 diabetic children. Instead, the goal of the research is to pinpoint what part of the cord blood is providing the benefit. The theory is that the regulatory T cells in the cord blood prompt a type of immune regulation. Surprisingly, the team thinks that the effect has nothing to do with the stem cells and their ability to become beta (insulin producing) cells. Instead, it is about the regulatory T cells, of which cord blood has a rich supply. These cells seem to somehow neutralize the body’s attack on the beta cells.

Nevertheless, all of the big-name organizations, including the JDRF and the American Academy of Pediatrics, do not recommend private cord blood banking at this time. The evidence to support it is simply not there.

I’m still researching, though, and I’ll let you know what I find. My mind tells me that private banking is a big waste of money — it’s a longshot that we would ever use the blood anyway. But my heart tells me that it would be an awful big gamble not to save this valuable resource.

Resources:

• First Use of Cord Blood to Alter Course of Type 1 Diabetes from the American Diabetes Association, http://parentsguidecordblood.org/content/media/m_pdf/ADA_T1D_PR-06-25-07.pdf
• Parent’s Guide to Cord Blood Foundation Website, http://parentsguidecordblood.org/content/usa/medical/diseases.shtml
• The Therapeutic Potential of Stem Cells From Umbilical Cord Blood on the JRDF’s website, http://www.jdrf.org/index.cfm?fuseaction=home.viewPage&page_id=643CEBB4-110A-9BB5-F870BEF6B544DD2A
• Cord blood may preserve insulin levels in children with type 1 diabetes in University of Florida News at http://news.ufl.edu/2007/06/25/cord-blood/
• Cord Blood Banking for Potential Future Transplantation on the American Academy of Pediatrics Website, http://aappolicy.aappublications.org/cgi/content/full/pediatrics;119/1/165
• ACOG Revises Opinion on Cord Blood Banking on the website for the American Congress of Obstetricians and Gynecologists, http://www.acog.org/from_home/publications/press_releases/nr02-01-08-2.cfm

22 weeks and cord blood banking

Today I made the trip into the “big city” for my 22 week check up with the high-risk OB. It was short and sweet. Everything looks good, I didn’t get lost, not even on the way out of town, and I got to hear the heartbeat again. What more could I ask for?

I did ask the doctor about cord blood banking today. I was surprised by his response. He doesn’t really think it is necessary. He says there are lots of ways to get stem cells these days besides from the cord blood, and, so far, they can only just delay the onset of full-blown diabetes with cord blood cells for a year or two.

I have done quite a bit of research into the issue, but I am still unsure of the best course of action. Because of the underlying autoimmune condition in Type 1, it seems like being able to make beta cells from stem cells is only half of the battle. Until someone figures out how to stop the autoimmune response and those nasty T-cells, those replacement beta cells are doomed to the same fate as our original beta cells. I am hopeful that researchers like Dr. Faustman are onto something, but I’ve kind of given up on the whole “cure in my lifetime” idea.

What if I am selling my baby short, though? My emotional, pregnant mind asks, what if I give this stupid disease to him and then they do figure out a way to cure it with cord blood, and I was too much of a cheap-skate to save his blood for him? I guess it’s this sense of anguish and guilt that the cord blood banks are “banking on” when they try to convince us to pay them an arm and a leg to save our cord blood for us.

My doctor was also quite critical of the salespeople who try to bribe him into convincing his patients to use their bank with free trips to tropical locations. Pretty disgusting, no? Given the exorbitant rates the banks are charging to store the cells, and their crass sales techniques, he basically thinks it’s a rip-off. He said he did not bank his own children’s stem cells, but I did not ask what their genetic risks are, so I am not sure how comforting that is.

Nevertheless, he said he would gather some reputable information on the process and the banks for me so that my husband and I can make an informed decision. On the plus side, he says it is easy to collect the cells, and he does not charge anything to do it.

For those of you who have already been here and done this, did you bank your baby’s cord blood? Which bank did you choose and why? If you prefer not to post in the comments, please e-mail me at nici [dot] blog [at] gmail [dot] com. I sure would appreciate your thoughts on the issue!

In other news, the ophthalmologist appointment last week was also super easy. The worst part was the blinding drive home in the snow. The doctor says my retinas are beautiful and that he would not know I was “sweet” if I did not tell him. That was music to my ears. I have to see him again in May for a second check.

Next on the agenda: an appointment with the Endo on Friday, another appointment with the High-risk OB in two weeks and an ultrasound in four weeks.