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Cord Blood rejected (long)
I mentioned this last week but now have more information.
I don't know if people know about cord blood -- a year ago when a friend of mine asked about it, I didn't. Well the story is that a small amount of the blood can be drawn from the umbillical cord after the baby is delivered. In the blood are stem cells and they use them for transplants for people (usually kids) with certain genetic and other serious disorders. The technology is booming and the implications keep growing.
Our neighbor's son has ALD, a rare genetic disorder. At 8 years old he was a normal child and then began exhibiting bizaar behavior. They eventually learned that his brain was being eaten away by this disorder. They were told that their only option, other than letting him die, was a stem cell transplant. They did the transplant, and is not only alive but has had improvement. There were only two cord blood matches for him in the world.
So knowing this, I feel passionate about wanting to donate our child's cord blood to potentially help other families. The reason we were rejected is that they restrict donations from babies where there was donor egg or sperm. They will only allow them if the sperm or egg came from a bank that is accredited by AATB. Since we did not use a bank we are eliminated. Also, there are not many banks accredited by AATB, so even though we are going to bank our donor's sperm for our next kid, there is no AATB bank in NYC. And most of the banks we considered when we thought about anonymous sperm are not on the AATB list.
I am really frustrated. Since we know our donor well, did extensive testing on him and he is willing to answer any questions that the cord blood people have, I don't understand the problem. How is what we did any different than a straight couple having sex to make a baby? How is our child's blood at any additional risk? I would contend that we know way more about W and our donor through considering their histories and doing testing than most straight couples. Thus creating lower risk.
I spoke to the head honcho (who was very nice) at the National Bone Marrow Registry and someone (who was also very nice) at the National Cord Blood Registry (the organizations are linked). Due to FDA pressure and a committee that meets only two times annually (won't meet again until June) we are out of luck. So I am writing a letter for the committee meeting and one to the FDA. Not sure it will make any difference but I feel like I need to put my voice in the mix.
So anyway, sorry to rant. This is yet another way that not being part of the mainstream make me/us feel discriminated against.
Re: Cord Blood rejected (long)
I wanted to throw in my two cents here, not because I think you are wrong to be frustrated (I would be too), but because I think these rules were made with good intentions and will evolve over time to be more effective and less restrictive.
Banks accredited by the AATB perform the most stringent genetic disease screening; their standards are far above what is required by state and federal law. Since genetic diseases can be passed through cord blood donations and the cord blood industry/research is extremely new, I'm not too surprised that Congress and the FDA are struggling to figure out the best way to go about this. I think that in time they'll remove the AATB rule, but for right now it's an easy placeholder to provide some protection while they work out rules that better balance society's need for these types of healing donations with the medical risks. You may have done everything right as far as having your donor tested, but the work involved in making each non-AATB family prove individually that all of that has been done - vs. just looking at the form, seeng that it's AATB (and thus knowing that all of that work has already been done) - well, it's just a whole lot easier to draw a clear line for everyone, rather than make those individual determinations.
As far as whether your baby's blood is any more dangerous than a straight couple's blood - no, not your baby in particular. But one of the reasons genetic testing is such a concern for American sperm banks is that the US does not regulate the number of babies that can be conceived per donor. (Great Britain, for instance, limits the number to 10 live births per donor.) So while the average American non-donor man has one or two children, the average American sperm donor may have 5, 10, or 30 children, and the potential for an equal number of cord blood donations. That's not the case for you and your donor, but, it's a very new industry and right now they seem to be looking toward the insemination industry for guidance while they work things out.?