What's the deal with cord blood and farming your own stem cells?
February 25, 2005 1:07 PM Subscribe
I've been reading up a bit lately on cord blood. It's kind of a cool idea, to capture stem cells your child may need someday -- kinda like always having "spare parts" available if anything goes wrong and technology continues to innovate. But I get the feeling that it costs a grand or so to start, and hundreds per year. I also hear that it may only help in childhood leukemia instances, so I'm on the fence. Is it worth the money? Are the applications for it real and tangible? Is it a smart insurance policy at this point or a silly thing worrisome parents are being bilked over?
We looked into this ourselves, and basically found two things:
1) It still seems to have a lot more promise in theory than in practice, as you've pointed out. We never really saw a very concrete description of exactly _how_ it could be used, beyond the example of childhood leukemia. (Not that that's not potentially important, but it's not like it could be used 100 different ways...just if your kid happens to get one very specific condition.) I could be wrong, but that's all we ever found, too. Everything else was more what cord blood _might_ be able to do someday.
2) Unless you're giving birth at a place that's totally into the idea, with a doctor that's totally into the idea, it becomes something you've got to _make_ happen, in the middle of everything else that's going on. Believe me--when you're in the thick of it, there's likely to be _so_ much other stuff happening, that staying on top of the cord, and making sure it gets stored, etc., correctly will not be simple. (For our first, which was a c-section, they had already taken away the cord while I was still holding our baby for the first time, and watching them invert...well, let's just say there were a _lot_ of other things on my mind. By the time I even thought to check, it was moot.)
I don't mean to talk you out of it. It may be more straightforward now--this was a few years ago for us. If it's just a box you check off, to make sure it gets done, then it's one thing, but for us the cost, combined with the aggravation of making it happen, just didn't make it worth it.
posted by LairBob at 1:27 PM on February 25, 2005
1) It still seems to have a lot more promise in theory than in practice, as you've pointed out. We never really saw a very concrete description of exactly _how_ it could be used, beyond the example of childhood leukemia. (Not that that's not potentially important, but it's not like it could be used 100 different ways...just if your kid happens to get one very specific condition.) I could be wrong, but that's all we ever found, too. Everything else was more what cord blood _might_ be able to do someday.
2) Unless you're giving birth at a place that's totally into the idea, with a doctor that's totally into the idea, it becomes something you've got to _make_ happen, in the middle of everything else that's going on. Believe me--when you're in the thick of it, there's likely to be _so_ much other stuff happening, that staying on top of the cord, and making sure it gets stored, etc., correctly will not be simple. (For our first, which was a c-section, they had already taken away the cord while I was still holding our baby for the first time, and watching them invert...well, let's just say there were a _lot_ of other things on my mind. By the time I even thought to check, it was moot.)
I don't mean to talk you out of it. It may be more straightforward now--this was a few years ago for us. If it's just a box you check off, to make sure it gets done, then it's one thing, but for us the cost, combined with the aggravation of making it happen, just didn't make it worth it.
posted by LairBob at 1:27 PM on February 25, 2005
caddis actually has a great idea--again, if you can just easily make arrangements for the donation to happen, beforehand.
posted by LairBob at 1:28 PM on February 25, 2005
posted by LairBob at 1:28 PM on February 25, 2005
you might look at the info at the stem cell information centre. reading their faq i can't see how cord blood, which is taken at birth, is related to embryonic stem cells. a baby is not an embryo.
it seems to me, at first uninformed glance, that they're exploiting a confusion over babies, embryos, and adult stem cells. if i'm right they're charging you to store the same thing you can get by sticking a needle in the child's arm at any point in its life.
i'd be very careful here. if a biochemist doesn't answer here, try and find one before doing anything.
posted by andrew cooke at 1:28 PM on February 25, 2005
it seems to me, at first uninformed glance, that they're exploiting a confusion over babies, embryos, and adult stem cells. if i'm right they're charging you to store the same thing you can get by sticking a needle in the child's arm at any point in its life.
i'd be very careful here. if a biochemist doesn't answer here, try and find one before doing anything.
posted by andrew cooke at 1:28 PM on February 25, 2005
My husband and I considered saving our son's cord blood. The stem cells are the same, as I understand it, as the ones collected from human embryos. So, while it may currently have a limitation for being helpful with childhood leukemia, there may be future applications. Part of the expense is that the storage of cord blood is managed by private companies who have expenses to meet. I don't know their cost structure, but it seemed to us like an expensive insurance policy for an event which may never occur.
After ruling out storage of cord blood, we attempted to donate it. At the time, we were living near the Jones Institute and Eastern Virginia Medical School. One of the doctors there was working on stem cell research. We thought that since collecting stem cells from embryos is a controversial topic, offering stem cells from cord blood which would otherwise be destroyed would be a good alternative. Unfortunately, no system was in place to collect and store cord blood for research purposes. The doctor was working towards that end and hoped to have something in place within five years. The conversation was held nearly nearly 4 years ago.
In the meantime, we have and occassionally continue to write the administration, pointing out that stem cells can be collected from sources which harm no form of life no matter how you define it. Sorry folks, the placenta and umbilical cord have no chance of independant life.
posted by onhazier at 1:30 PM on February 25, 2005
After ruling out storage of cord blood, we attempted to donate it. At the time, we were living near the Jones Institute and Eastern Virginia Medical School. One of the doctors there was working on stem cell research. We thought that since collecting stem cells from embryos is a controversial topic, offering stem cells from cord blood which would otherwise be destroyed would be a good alternative. Unfortunately, no system was in place to collect and store cord blood for research purposes. The doctor was working towards that end and hoped to have something in place within five years. The conversation was held nearly nearly 4 years ago.
In the meantime, we have and occassionally continue to write the administration, pointing out that stem cells can be collected from sources which harm no form of life no matter how you define it. Sorry folks, the placenta and umbilical cord have no chance of independant life.
posted by onhazier at 1:30 PM on February 25, 2005
isn't that last argument of onhazier's a strong argument for this not being embryonic stem cells?
posted by andrew cooke at 1:33 PM on February 25, 2005
posted by andrew cooke at 1:33 PM on February 25, 2005
Matt, we did save our three-month-old daughter's cord blood, mostly because our older daughter has a rare genetic disorder, and we don't want to foreclose any future options that may be available.
Absent a specific concern, I doubt the science as it exists today justifies the cost. However, the beauty is that the cord blood will still be there in 10 or 20 years as new discoveries are made. It's a close call.
posted by pardonyou? at 1:37 PM on February 25, 2005
Absent a specific concern, I doubt the science as it exists today justifies the cost. However, the beauty is that the cord blood will still be there in 10 or 20 years as new discoveries are made. It's a close call.
posted by pardonyou? at 1:37 PM on February 25, 2005
It sounds fascinating , and if resources are not an issue, I would try it. That being said, it's too bad that one can't do both, but I guess there is not enough blood for that. Why can't the donor program provide some sort of ID for the sample, should the donor develop a need?
posted by lobstah at 1:48 PM on February 25, 2005
posted by lobstah at 1:48 PM on February 25, 2005
So much new information on stem cells of both types. I remember the cord blood collection information talking about cord blood as being a viable alternative to embryonic stem cells, like they're basicly the same type of cells with just a different method of collection. Additionally, the doctor we spoke with didn't try to correct our thought processes. Ah well, we were clearly wrong. Here's a graphical comparison of the embryonic and umbilical cords as found in a Forbes article.
Anyway, Bloodline looks to be a big resource for blood related research and information. They even have a section on cord blood.
posted by onhazier at 1:50 PM on February 25, 2005
Anyway, Bloodline looks to be a big resource for blood related research and information. They even have a section on cord blood.
posted by onhazier at 1:50 PM on February 25, 2005
It may be obvious, but an important factor to consider will be your family's medical history. Leukemia/lymphoma history would be obvious things to think about, but it might also be worthwhile to consider (and weight less heavily?) other conditions for which stem cell research is currently being pursued. There may not be stem cell treatments for them now, but who knows where things will stand down the road if the need arises.
posted by duck at 2:00 PM on February 25, 2005
posted by duck at 2:00 PM on February 25, 2005
People I know who work in the field have told me not to bother banking my soon-to-be born child's cord blood. The whole spare parts idea is very pie-in-the-sky, in their opinion. Also, there are some very sketchy organizations (the site you linked to looks a bit iffy) out there trying to sign us soon-to-be-parents up and get our money. However, cord blood transplants can save lives. So it's a great idea to donate to a bank like the NMDP or the National Cord Blood Program; they are both legit operations and they do very good work. But paying muhco dinero to store it for your own use is probably a waste of time and money.
posted by mds35 at 2:22 PM on February 25, 2005
posted by mds35 at 2:22 PM on February 25, 2005
The cells talked about here are NOT human embryotic stems cells that give rise to life. HESC are only around sometime during 6-7 day period of embryotic development. After that period, all cells are marked for their future and cannot differentiate into just any type of cell*.
It is also important to note that in the collection, the aim is to get erythropoietic stem cells which give rise to blood cells. The idea behind this is that during chemo, a LOT of the blood cells are damaged and/or destroyed. By having an external source of erythropoietic stem cells, doctors can grow healthy blood cells to inject back into the patient. As far as I know, this process of blood cell regeneration would be useful for any medical problem where a lack of healthy blood cells is a concern.
Also of important is these erythropoietic stem cells are already being used to help regenerate damaged bone marrow and blood cells as a result of chemo- the idea behind this is a way to assist in improving the method.
*Well, based upon our current knowledge at least. It is already know that that adult stem cells can differentiate into other cell types other than they own stem cells- ie, muscle stem cells under the right condition differentiate into neuron cells, which is normally not the case. It is possible that in the post-fetus developmental stage, adult stem cells can possess the ability differentiate into any cell type, though an example of that happening is currently known. I could add more, but hope that suffices.
posted by jmd82 at 2:37 PM on February 25, 2005
It is also important to note that in the collection, the aim is to get erythropoietic stem cells which give rise to blood cells. The idea behind this is that during chemo, a LOT of the blood cells are damaged and/or destroyed. By having an external source of erythropoietic stem cells, doctors can grow healthy blood cells to inject back into the patient. As far as I know, this process of blood cell regeneration would be useful for any medical problem where a lack of healthy blood cells is a concern.
Also of important is these erythropoietic stem cells are already being used to help regenerate damaged bone marrow and blood cells as a result of chemo- the idea behind this is a way to assist in improving the method.
*Well, based upon our current knowledge at least. It is already know that that adult stem cells can differentiate into other cell types other than they own stem cells- ie, muscle stem cells under the right condition differentiate into neuron cells, which is normally not the case. It is possible that in the post-fetus developmental stage, adult stem cells can possess the ability differentiate into any cell type, though an example of that happening is currently known. I could add more, but hope that suffices.
posted by jmd82 at 2:37 PM on February 25, 2005
Oh, and by the way, from what I understand, the NCBP, and probably the NMDP too, do allow donors to retrieve their cord blood if they need it in the future, provided it is still available (i.e. has not been transplanted to a tissue-matched recipient).
posted by mds35 at 2:53 PM on February 25, 2005
posted by mds35 at 2:53 PM on February 25, 2005
If you're planning on giving birth in Portland, there are four hospitals in town that are set up for accepting cord blood donations, at least via the Red Cross. We're using Portland Providence in a few weeks and are planning on donating there, if all goes well. (I just chose that hospital as it's where my midwives deliver, but this is a good bonus.)
posted by lisa g at 4:27 PM on February 25, 2005
posted by lisa g at 4:27 PM on February 25, 2005
We did it with our daughter. The price, to us, was not substantial enough to cause worry: we prepaid 18 years of storage (the max amount, after which time the cord blood ownership transfers to our daughter) at something like $1300.
Ideally, it's an insurance policy we'll never have to use, but given the advances in treatment using cord blood that are (hopefully, thanks to the SF ballot initiative) right around the corner, it made sense.
You can also donate the cord blood if you decide not to use it, and if you can find a public bank that's willing to accept it, you won't pay anything for the donation.
posted by aberrant at 4:37 PM on February 25, 2005
Ideally, it's an insurance policy we'll never have to use, but given the advances in treatment using cord blood that are (hopefully, thanks to the SF ballot initiative) right around the corner, it made sense.
You can also donate the cord blood if you decide not to use it, and if you can find a public bank that's willing to accept it, you won't pay anything for the donation.
posted by aberrant at 4:37 PM on February 25, 2005
We decided to do it, going with Cryo-Cell on recommendation from my wife's family. I'm still not convinced it's necessary, personally.
As for worrying about keeping track of the whole thing in the chaos of childbirth, it wasn't an issue for us. At least in Santa Monica, it's commonplace enough that all the nursing staff was very familiar with the process. They handled the entire thing, and I called the courier to pick up the blood a few hours later. No big deal.
posted by waxpancake at 4:45 PM on February 25, 2005
As for worrying about keeping track of the whole thing in the chaos of childbirth, it wasn't an issue for us. At least in Santa Monica, it's commonplace enough that all the nursing staff was very familiar with the process. They handled the entire thing, and I called the courier to pick up the blood a few hours later. No big deal.
posted by waxpancake at 4:45 PM on February 25, 2005
One of my best friends and his partner saved the cord blood from their daughter, who was diagnosed with leukemia when she was 2 years old. It has, as I understand, been of great assistance in her treatment.
posted by stavrosthewonderchicken at 7:13 PM on February 25, 2005
posted by stavrosthewonderchicken at 7:13 PM on February 25, 2005
It's iffy, matt. The American Academy of Pediatrics officially recommends that parents bank their newborn baby's cord blood only if they have family members with a disease that may require a stem cell transplant, or a strong family history of such diseases.
(Email me at my gmail address for more.)
posted by amberglow at 7:53 PM on February 25, 2005
(Email me at my gmail address for more.)
posted by amberglow at 7:53 PM on February 25, 2005
Matt: Not trying to be a smartass, but have you asked Jason/Q? As a pediatric onc/heme fellow, I'd think he would be a great source of info.
posted by sillygit at 8:02 PM on February 25, 2005
posted by sillygit at 8:02 PM on February 25, 2005
Just to be clear, the stem cells that can be isolated from cord blood are hematopoietic stem cells -- they can develop into all kinds of blood cells (red blood cells, platelets, immunce system cells), and it's controversial whether they can form anything else (this page has a nice summary. )
On the other hand, there's more than just blood in the cord. They've recently discovered (at my university, thank you very much) that umbilical cords are also a source of mesenchymal progenitor cells, which go on to form things like bone and muscle. There might be other sorts of stem cells in there too, waiting to be discovered. I think the best bet is donating the cord and/or blood -- if enough people do it instead of privately banking the stuff, won't there be more to go around?
posted by greatgefilte at 8:07 PM on February 25, 2005
On the other hand, there's more than just blood in the cord. They've recently discovered (at my university, thank you very much) that umbilical cords are also a source of mesenchymal progenitor cells, which go on to form things like bone and muscle. There might be other sorts of stem cells in there too, waiting to be discovered. I think the best bet is donating the cord and/or blood -- if enough people do it instead of privately banking the stuff, won't there be more to go around?
posted by greatgefilte at 8:07 PM on February 25, 2005
We did it for both girls. We could afford the costs, and we certainly hope that we're wasting our money.
The only thing that gave me pause when we were researching and deciding what to do about this was that my father-in-law is skeptical about it, and he's a hematologist at the Mayo Clinic. But other than that, I feel pretty good about it.
Reading waxpancake's answer makes me chuckle. I delivered twice at Stanford, and the first time went off without a hitch and the blood was collected with no problems. The second time was a clusterfuck, and we were lucky to have gotten the blood collected at all, and nobody was willing to come process the paperwork for me. So I sat up late at night in my hospital bed with my hours-old daughter next to me, labeling little vials and forging signatures and hoping to hell I was getting all the documentation done correctly.
posted by padraigin at 9:04 PM on February 25, 2005
The only thing that gave me pause when we were researching and deciding what to do about this was that my father-in-law is skeptical about it, and he's a hematologist at the Mayo Clinic. But other than that, I feel pretty good about it.
Reading waxpancake's answer makes me chuckle. I delivered twice at Stanford, and the first time went off without a hitch and the blood was collected with no problems. The second time was a clusterfuck, and we were lucky to have gotten the blood collected at all, and nobody was willing to come process the paperwork for me. So I sat up late at night in my hospital bed with my hours-old daughter next to me, labeling little vials and forging signatures and hoping to hell I was getting all the documentation done correctly.
posted by padraigin at 9:04 PM on February 25, 2005
Response by poster: Thanks for all the info all. I'll likely go with a donation. I'd hate to throw it away, and it sounds like the banking is a bit of a scam with no family history of cancer.
Matt: Not trying to be a smartass, but have you asked Jason/Q? As a pediatric onc/heme fellow, I'd think he would be a great source of info.
Yeah, every time I remember to ask him, he's not on IM. He's told me many, many stories of young cancer patients, so I'm curious if he'd ever do it for his own children someday.
posted by mathowie at 10:11 PM on February 25, 2005
Matt: Not trying to be a smartass, but have you asked Jason/Q? As a pediatric onc/heme fellow, I'd think he would be a great source of info.
Yeah, every time I remember to ask him, he's not on IM. He's told me many, many stories of young cancer patients, so I'm curious if he'd ever do it for his own children someday.
posted by mathowie at 10:11 PM on February 25, 2005
I just wanted to add a perspective that I didn't see elsewhere in the thread. The blood in the cord doesn't belong to the cord. It belongs to the baby. The placenta is the baby's organ and functions for a short while after the baby is born. In typical obstetrical practice the cord is clamped and cut as soon as possible leaving some blood in the cord that can be harvested and banked. One reason is because all of the test, drugs, and other activities that make up the care routine for a newborn are done more easily away from the mom, as are the care activities for the mom if the baby is not present.
In the natural biological process the cord continues to have a pulse and course blood into the baby's body for several minutes after the baby is born. In my wife's homebirth midwifery practice this is allowed to run its natural course before the cord is clamped and cut. It's one of those natural birth processes that people don't consider like when the placenta detaches and is delivered.
Doctors may claim that the cord is clamped and cut because the additional blood volume may contribute to jaundice. A traditional midwife would counter that 1. jaundice is not necessarily pathological. 2. there are medical problems that can arise from hypovolemia (low blood volume) like difficulty in regulating body temperature 3. Babies get supplemental oxygen as long as the placenta functions and cord pulses, this is probably good while lung function comes online 4. Babies have small bodies and even a small reduction in blood volume may be significant 5. those stem cells may have some function in the body they can't perform if they aren't present. 6. without a demonstrable benefit, why mess with what God or Evolution put together.
For more information on this perspective try Gentlebirth.org that includes findings like moms whose babies are clamped and cut early bleed more than those who wait.
posted by putzface_dickman at 8:57 AM on February 26, 2005
In the natural biological process the cord continues to have a pulse and course blood into the baby's body for several minutes after the baby is born. In my wife's homebirth midwifery practice this is allowed to run its natural course before the cord is clamped and cut. It's one of those natural birth processes that people don't consider like when the placenta detaches and is delivered.
Doctors may claim that the cord is clamped and cut because the additional blood volume may contribute to jaundice. A traditional midwife would counter that 1. jaundice is not necessarily pathological. 2. there are medical problems that can arise from hypovolemia (low blood volume) like difficulty in regulating body temperature 3. Babies get supplemental oxygen as long as the placenta functions and cord pulses, this is probably good while lung function comes online 4. Babies have small bodies and even a small reduction in blood volume may be significant 5. those stem cells may have some function in the body they can't perform if they aren't present. 6. without a demonstrable benefit, why mess with what God or Evolution put together.
For more information on this perspective try Gentlebirth.org that includes findings like moms whose babies are clamped and cut early bleed more than those who wait.
posted by putzface_dickman at 8:57 AM on February 26, 2005
Best answer: To put the answer here, rather than in a private IM to Matt:
There are two ways to answer this, one as the pragmatist pediatric hematologist/oncologist that I am, and one as the parent I'll (hopefully) be someday. I'll only deal with the first, since I'm not yet a parent, and I'm sure that I don't have the slightest clue today how I'll feel when that day comes.
To start, though, let me explain why cord blood is good in the first place, and what it can and can't do -- in my experience, families (rightly) don't know the nuances of this, and it's super-important.
At its most basic level, cord blood contains the same stuff as the rest of the baby's blood except for also having a much-higher-than-normal level of hematopoietic stem cells. These are the cells that give rise to all the types of blood cells in your body, as well as one or two other types of cells (osteoblasts, or the cells that secrete the stuff that builds your bones, are the biggie), and are the cells that a child would need back if their bone marrow were ever to vanish or need to be ablated in order to cure them of some disease. But obviously, these cells can only ever help a person regenerate blood cells, so that's why the conditions that we talk about needing bone marrow cells back are diseases of the blood cells themselves, like leukemia or lymphoma. (As greatgefilte said above, though, there's increasing evidence that cord blood also has other stem cells in it -- but these aren't stem cells that can be used in the same way as bone marrow transplant, so they're still waiting to understand what that means.)
OK, so when would I recommend to a family that they think about cord blood banking? There are some specific conditions:
1. A predeliction towards leukemia in the family (e.g., Li-Fraumeni syndrome), or any other set of circumstances that has led a genetic counselor to deem your family likely to have a heritable leukemia/lymphoma condition. The reason for this is that we're getting very, very good at doing bone marrow transplantation using cord blood as the donor source -- I'd say that around 10 percent of the transplants in which I participated last year were CBTs -- and for most types of leukemia or lymphoma, bone marrow transplantation sits somewhere on the decision tree as the gold standard of care. So if there's a greater-than-average risk of leukemia in the family, there's a reasonable cause for banking the cord blood on the off chance that the to-be-born child will need it again.
2. (This is the context in which I'm asked most often:) There is currently a full sibling of the to-be-born child who either has leukemia or lymphoma, or has undergone treatment for leukemia or lymphoma in the past five to ten years. This is for the same reason, with the caveat that the two children only have a 25% chance of being fully-matched at the genetic loci that determine if the marrow is an acceptable source of donor hematopoietic stem cells were the child with leukemia to eventually need a bone marrow transplant. The counter-caveat is that some insurance companies will pay for the start-up costs of this banking; both times I've been involved, the insurance company has put up not even the slightest bit of a fight. In any event, if this is the reason that someone is interested in banking cord blood, I would strongly recommend that they spend some time on the Children's Hospital of Oakland Research Institute website, since that's the only institution that has a full-blown, federally-funded research protocol in place for storing sibling cord blood. CHORI's program is made up of clinicians, not a corporation, and it really is awesome.
Those really are the two times that I'd really say it's worth it in the grand sense. But there's an obvious third that I always discuss with families: if the cost of doing so is truly trivial to them, and if the mental anguish of not doing so would be immense, then it's worth it for them to bank the cord blood. But it's really this notion that also contributes to the "scam" of cord blood banking -- a few of the companies really try to play up the advantages of future technology (which are likely real but totally unknown) and then play off of the natural familial desire to protect one's newborn from anything that could ail them, and frequently end up gaining customers that really don't have any reason to need to bank the cord.
And that leads to the final point, that if someone doesn't see their family as needing to bank the cord blood for a specific reason, then (as many, many others have said in this thread) by all means please consider banking it. As I said before, about 10% of the transplants on our peds unit have been done with cord blood as the source, and one of the biggest things keeping that number down is that there aren't a lot of cord blood donors coming into the marrow registry pool. Cord blood stem cells are unique, as well -- while they're the same type of hematopoietic stem cells that are present in any other person's bone marrow, they're much less tolerized to the cellular specifics of the baby, and that means that (as a bone marrow transplanter) I can use a cord blood specimen that's less-well-matched to the recipient than any corresponding bone marrow specimen. This broadens the potentially-matching pool of marrow for any specific patient, and that's a good thing. For you, Matt, Lisa G pointed you to the list of Portland-area hospitals that can help you out, and there's even an actual NMDP cord blood bank in Portland as well. For everyone else, the NMDP maintains a list of banks and participating hospitals that you can peruse. As LairBob said at the start of this comment thread, sometimes there's a bit of work that you have to put into it, which is a real shame; ask your OB/GYN about helping you if you sense that that's true in your instance, and insist to them that it's important to you.
And because it's the world we live in, I need to finish by saying I'm not your doctor, I'm not your kid's doctor, and everyone should discuss this with their pediatrician, OB/GYN, pediatric oncologist, or whoever is most appropriate.
posted by delfuego at 11:15 AM on February 26, 2005 [4 favorites]
There are two ways to answer this, one as the pragmatist pediatric hematologist/oncologist that I am, and one as the parent I'll (hopefully) be someday. I'll only deal with the first, since I'm not yet a parent, and I'm sure that I don't have the slightest clue today how I'll feel when that day comes.
To start, though, let me explain why cord blood is good in the first place, and what it can and can't do -- in my experience, families (rightly) don't know the nuances of this, and it's super-important.
At its most basic level, cord blood contains the same stuff as the rest of the baby's blood except for also having a much-higher-than-normal level of hematopoietic stem cells. These are the cells that give rise to all the types of blood cells in your body, as well as one or two other types of cells (osteoblasts, or the cells that secrete the stuff that builds your bones, are the biggie), and are the cells that a child would need back if their bone marrow were ever to vanish or need to be ablated in order to cure them of some disease. But obviously, these cells can only ever help a person regenerate blood cells, so that's why the conditions that we talk about needing bone marrow cells back are diseases of the blood cells themselves, like leukemia or lymphoma. (As greatgefilte said above, though, there's increasing evidence that cord blood also has other stem cells in it -- but these aren't stem cells that can be used in the same way as bone marrow transplant, so they're still waiting to understand what that means.)
OK, so when would I recommend to a family that they think about cord blood banking? There are some specific conditions:
1. A predeliction towards leukemia in the family (e.g., Li-Fraumeni syndrome), or any other set of circumstances that has led a genetic counselor to deem your family likely to have a heritable leukemia/lymphoma condition. The reason for this is that we're getting very, very good at doing bone marrow transplantation using cord blood as the donor source -- I'd say that around 10 percent of the transplants in which I participated last year were CBTs -- and for most types of leukemia or lymphoma, bone marrow transplantation sits somewhere on the decision tree as the gold standard of care. So if there's a greater-than-average risk of leukemia in the family, there's a reasonable cause for banking the cord blood on the off chance that the to-be-born child will need it again.
2. (This is the context in which I'm asked most often:) There is currently a full sibling of the to-be-born child who either has leukemia or lymphoma, or has undergone treatment for leukemia or lymphoma in the past five to ten years. This is for the same reason, with the caveat that the two children only have a 25% chance of being fully-matched at the genetic loci that determine if the marrow is an acceptable source of donor hematopoietic stem cells were the child with leukemia to eventually need a bone marrow transplant. The counter-caveat is that some insurance companies will pay for the start-up costs of this banking; both times I've been involved, the insurance company has put up not even the slightest bit of a fight. In any event, if this is the reason that someone is interested in banking cord blood, I would strongly recommend that they spend some time on the Children's Hospital of Oakland Research Institute website, since that's the only institution that has a full-blown, federally-funded research protocol in place for storing sibling cord blood. CHORI's program is made up of clinicians, not a corporation, and it really is awesome.
Those really are the two times that I'd really say it's worth it in the grand sense. But there's an obvious third that I always discuss with families: if the cost of doing so is truly trivial to them, and if the mental anguish of not doing so would be immense, then it's worth it for them to bank the cord blood. But it's really this notion that also contributes to the "scam" of cord blood banking -- a few of the companies really try to play up the advantages of future technology (which are likely real but totally unknown) and then play off of the natural familial desire to protect one's newborn from anything that could ail them, and frequently end up gaining customers that really don't have any reason to need to bank the cord.
And that leads to the final point, that if someone doesn't see their family as needing to bank the cord blood for a specific reason, then (as many, many others have said in this thread) by all means please consider banking it. As I said before, about 10% of the transplants on our peds unit have been done with cord blood as the source, and one of the biggest things keeping that number down is that there aren't a lot of cord blood donors coming into the marrow registry pool. Cord blood stem cells are unique, as well -- while they're the same type of hematopoietic stem cells that are present in any other person's bone marrow, they're much less tolerized to the cellular specifics of the baby, and that means that (as a bone marrow transplanter) I can use a cord blood specimen that's less-well-matched to the recipient than any corresponding bone marrow specimen. This broadens the potentially-matching pool of marrow for any specific patient, and that's a good thing. For you, Matt, Lisa G pointed you to the list of Portland-area hospitals that can help you out, and there's even an actual NMDP cord blood bank in Portland as well. For everyone else, the NMDP maintains a list of banks and participating hospitals that you can peruse. As LairBob said at the start of this comment thread, sometimes there's a bit of work that you have to put into it, which is a real shame; ask your OB/GYN about helping you if you sense that that's true in your instance, and insist to them that it's important to you.
And because it's the world we live in, I need to finish by saying I'm not your doctor, I'm not your kid's doctor, and everyone should discuss this with their pediatrician, OB/GYN, pediatric oncologist, or whoever is most appropriate.
posted by delfuego at 11:15 AM on February 26, 2005 [4 favorites]
This was a big issue for us when I was pregnant. So many of the materials that I received in my "So you're going to have a baby" packet from my doctor were "hard" sales pitches. Pictures of sick babies, and the threat that if you didn't spend these thousands of dollars that you were a negligent and evil parent and probably didn't deserve to have children.
The literature was scary enough to me, that I scheduled genetic testing and counseling when I was about 20 weeks along. I read everything I could get my hands on, including sites mentioned above. After the genetic workup was done, and both my internist and my ob/gyn said that they wouldn't advise me to store the cord blood, but that they would certainly make it happen if I wanted it to happen, and after reading how much use the materials could be for kids who *were* sick, rather that deep freezing it in potentia of sickness, we finally decided on donation.
But, now that it's all said and done, there should be rules regulating the hard sell of these types of services. That strikes me as unethical and immoral.
posted by dejah420 at 5:36 PM on February 26, 2005
The literature was scary enough to me, that I scheduled genetic testing and counseling when I was about 20 weeks along. I read everything I could get my hands on, including sites mentioned above. After the genetic workup was done, and both my internist and my ob/gyn said that they wouldn't advise me to store the cord blood, but that they would certainly make it happen if I wanted it to happen, and after reading how much use the materials could be for kids who *were* sick, rather that deep freezing it in potentia of sickness, we finally decided on donation.
But, now that it's all said and done, there should be rules regulating the hard sell of these types of services. That strikes me as unethical and immoral.
posted by dejah420 at 5:36 PM on February 26, 2005
This thread is closed to new comments.
posted by caddis at 1:25 PM on February 25, 2005