You Try and You Hope

but it doesn't seem to be enough sometimes.

I wanted to donate my/her/our umbilical cord blood to the National Marrow Donor Program and thought it would be a fairly easy process. Turns out just finding the information on how to go about donating it is daunting onto itself. It's a bit sad that you're constantly bombarded in your doctor's office and in baby books about keeping the stem cells for yourself and the ways, or companies I should say, that you have at your disposal. Nobody is talking about the public cord blood banks that supply lukemia patients or research labs.

We decided not to store ours privately not just because of cost (an initial fee of $1200-$1800 and a yearly fee of $125-200) and because neither of us has a history of any genetic/cancerous diseases but also because we feel that there is no clear understanding of what can actually be done in the future and whether those applications will be available considering the method in which the cells are collected and stored today. We also felt it would be better to put them to use now, to provide them to someone that has a need for them now in ways that have been shown to make a difference.

So, it turns out there's a lot of legal and cost issues that make donation almost impossible. The first hurdle is that the public registries only work with certain hospitals. The list is depressingly short and did not include my hospital. Once you find a public registry, like Cryobanks International, you have to fill out a slew of forms and have your doctor fill out a slew of forms and have all that mailed to them before the end of your 34th week of pregnancy. Here is where the process stopped for me since I'm well past that. So, unless you know that you want to donate from the moment you find out your pregnant don't even think about donating. In the process of being pregnant and figuring out all the different things you have to figure out for the changes that occur to you and the changes that are about to occur once the baby is here you're so overwhelmed that you fear you're forgetting something. In my case it turned out to be this issue and I'm pretty heart broken about it.

I also had the somewhat foolish assumption that it was standard procedure for the hospital to ask you if you wanted to donate or discard. I was especially surprised that a hospital linked to an academic institution such as Penn doesn't have this option for it's patients. It would be great. You have all these births occuring in your hospital, you have a core set up for storage and profiling (like you would do with blood, screen for malignancies such as HIV), provide them to patients in your hospital system (i.e. CHOP) who are waiting for a transplant, and give some to researchers in your vast medical research departments. But this is a way of thinking that is way too simple and way too optimistic. Again, cost and legal issues have made it far from standard. Being in the research world, apparently a bubble of a place, I keep forgetting that the current administration has made stem cell research a "red tape" area and that money still runs the world. Then there must be a few ethical issues I'm forgetting or shrugging off as not a big deal such as patient privacy rights (but I thought that was what HIPPA was for) or who do the stem cells ultimately belong to (If it's the baby's wouldn't the parent be considered negligent for not storing them in the first place? Could they sue a parent once 18?).

Even if I had made it in time to donate to the NMDP I would have been disuaded to do so since I would still have to cover the doctor/hospital fees involved in the collection -- an amount that again I can't afford and the public banks can't afford to reimburse me on.

And then I wonder why I'm so cynical about most things...