Cord blood banking

by Finn

In a recent discussion, Ada posted this link:

A stem cell transplant helped beat back a young doctor’s cancer. Now, it’s assaulting his body

It describes someone who had leukemia, and used a stem cell transplant as
part of a treatment regimen, but it is now causing him problems.

This led me to wonder whether he’d not be having these problems if he had
his own stem cells as a source for the transplant.

It also led me to today’s questions:

Have you banked your kids’ cord blood? If not, why not?

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40 thoughts on “Cord blood banking

  1. We did because it seemed like a good idea at the time. A few years ago we decided to donate it because we figured the odds of the kids needing it are pretty slim so we didn’t want to keep paying the storage fees.

  2. Arg! I wanted to bank my kid’s cord, but they gave me a med that slowed down his heartrate for a while, so then when he was born, they rushed him off on a crash cart and tossed it. This was apparently SOP, but no one said a thing about it until I asked afterwards. Had I been properly informed, I would’ve requested the cord be kept. If that isn’t possible when they’re rushing a kid off, then I would have declined the medication. I would never recommend Fair Oaks hospital to anyone giving birth! Oh, and his APGAR was fine.

  3. We did with DD because there was a free option: give it to the bank, and it is available for use for you or anyone else who needs it and who is an appropriate match. Seemed like a reasonable compromise, given the minimal likelihood of one of us needing it, and helping grow the supply for others seemed like a generally good thing to do.

  4. I have to admit this wasn’t even on my radar screen. And no one at my OB’s practice or at the hospital ever brought it up. So, no.

  5. We did with our younger two but not with our oldest (I had wanted to donate it with her but that wasn’t an option at the hospital). A dr. I talked to once called it a really expensive insurance policy.

  6. When did this become a widespread option? It was not on our radar screen when our kids were born 20+ years ago.

  7. At both our kids births, this was not mentioned to us. And our second child’s birth was at one of the well known hospitals in the country for labor & delivery.

    I know a young acquaintance whose bone marrow transplant was not successful, his father told us this. Very sad situation with this young man in his 20s.

  8. we did it, seemed like a good idea. The “insurance” idea. Now that youngest is off to college I’m planning to get out from the $50 annual storage fee. Didn’t know about the donation option.

  9. We donated to the public bank. This is totally in my husband’s wheelhouse and he thinks that the private banks are scammy.

  10. We did not, but it was on my radar and we did think about it with both babies. I do wonder if it would have been a match for a family member and prolonged his life, but who knows. Now years later we are exploring the storage of other body items and weighing the costs and benefits of it. So many questions and what ifs. Too bad I don’t have a crystal ball.

  11. Thinking back, I think we only donated one kid’s to the public bank. Kid #1 wasn’t eligible and kid #2 was born at a time when no one who could collect for the public bank was at the hospital. Kid #3 was born during regular business hours.

    S&M – my kids were all born at Fairfax which is part of the same hospital system as Fair Oaks. Fairfax is a total baby factory and I think Fair Oaks often gets swept up in their policies even though it is a small hospital.

  12. I never heard of cord blood banking as a routine process before today. Apparently the late 80s were when the techniques were perfected for using it in healing. My youngest was born in 1982. It seems to have far reaching benefits for treatment of certain blood disorders in children and young adults. The Mass legislature passed legislation in 2005 to require notification of pregnant women by hospitals (not sure of the effective date) and to set up a state cord blood bank. I am sure they did it for my grandkids. They are up on all the latest stuff.

  13. With my first (ten years ago) it really wasn’t pushed and by the time my second came 4 years later, the OBGYNs were really encouraging it.

  14. We were given the option. We couldn’t with DS1 because of his IUGR (the cord was the width of a shoe string) and I didn’t want to spend the money with DS2.

    LfB – I’m not surprised by your story. If I recall correctly, a major hospital in your neck of the woods was responsible for HeLa cells…

  15. We did not pay for it – I agree that it seemed scammy to us although there was a LOT of talk about this on the pregnancy/baby discussion boards that I frequented when I was pregnant.

    I had thought about donating it, but then DS came 3 weeks early. The paperwork wasn’t done, and I really did NOT care by the end of a very long day and night and day of labor/delivery.

  16. “LfB – I’m not surprised by your story. If I recall correctly, a major hospital in your neck of the woods was responsible for HeLa cells…”

    Well, ironically, DD was born in CO, where they had a public bank. DS was born here, and no one even mentioned that as an option. Go figure.

  17. We didn’t because I didn’t think it was likely enough to pay off to be worth several thousand dollars. I agree that the brochures seemed scammy and no healthcare providers encouraged us to consider. Honestly I was so sick and miserable during my pregnancy that I didn’t really look into it enough. Maybe I should reconsider for subsequent children. Donation would probably be something I’d be more likely to choose if I could get my act together to sign up.

  18. There were always brochures in my doctor’s waiting room in early 2000s. Loads of ads in parent magazines too. My doctor never discussed it with us, and we didn’t do it because we didn’t think it was worth the investment.

    I recently learned that if you and your spouse are from very different backgrounds, it can pay to bank because it might not be so easy to find a match in the general donor population.

    Unfortunately, a child of one of our friends was diagnosed with a blood cancer. His brother was not a match, so they ran his info through the donor system and they found 17 matches. It is a high number of matches. Most of the matches are in NYC and Israel. The doctor said it is because his parents are both descended from similar families in Eastern Europe and Russia.

    There is also new technology to help you use your own stem cells even if you have cancer, and are too old to have banked cord blood. My cousin has multiple myeloma. He went to MSK and they harvested his own cells. They were “cleaned up”, and put back into his body to grow healthy cells. A transplant from a relative or donor was not required. It’s a very long and painful procedure, but he’s starting to feel a lot better and he is home.

  19. I looked into this in detail for DS1 because FIL died of acute myelogenous leukemia a few weeks before his birth and we wanted to understand if DS1 would be at heightened risk of leukemia. The answer was “No” (FIL’s doctors explained that his leukemia was a result of receiving a lifetime dose of radiation for bone cancer) so given the cost and my lack of trust in medical storage/labs/transportation, it didn’t seem worthwhile.

    By the time my last 3 kids were born, they were delaying cutting the cord to allow most of the blood to be reabsorbed by the newborn, as I recall. In any case, we didn’t seriously consider it.

    Even by Totebagger standards, it appears that I do tons of my own medical research. I both annoyed and enlightened my “primary” obstetrician by pointing out the difference in term twin C-section rates between the local hospital (70%) and the hospital I delivered at (30%). As I put it, “I want a C-section if I need a C-section, but only if I need it. And it looks my odds of getting a C-section only if I need it are a lot better at the hospital 50 miles down the road.”

  20. I don’t recall banking it being an option I knew about, but I do have a vague memory of donating it for one or both kids. I may be revising history there though, or simply hoping we were asked about donation and said yes. I’m curious now, so will check w/ my ex about this. He remembers all of these details far better than I, perhaps because he wasn’t in excruciating pain at the time and could think clearly … ;)

  21. I think we might have been able to donate to the public bank, but I can’t really remember. There wasn’t a private storage option available, anyway.

  22. I banked for the first kid and donated for the second. My OB said I was the only patient that went through the effort to publicly donate (the hospital where I delivered was not part of their network and the donation had to go through their process). My OB waived her collection fees for the public donation. I briefly toyed with the idea of starting a non-profit whose primary role would be to encourage a questionnaire and public donation of cord blood to be the SOP for every delivery. If stem cells are so valuable and there is a virtually free source of them, we should make the donation process as easy as possible. Even if it was just for research purposes – seems like a no brainer.

  23. “When did this become a widespread option?”

    When DW was pregnant with DS, I found three private options nationwide.

    Shortly before DS was born, I heard about a local public bank being set up in conjunction with one in Seattle. I talked to the MD who was starting the bank a few times, and would’ve banked DS’ cord blood there except we weren’t sure the public bank would be ready in time, so we banked privately.

    DW’s OBGYN is well known locally, but DS was his first delivery involving CB banking.

    ITA with LfB. If the public option had been available earlier, we’d have banked there. As the founding MD told me, if your kid is difficult to match, it’s likely his/her CB would be available later if needed, and if your kid is easy to match, his/her CB would likely help someone else, but if your kid needed it, well, he/she is an easy match.

    I had to do a lot of logistical work in advance to make sure it got to the storage facility within a certain time window. My understanding is that the public bank handles all of that for its donors.

    To me, it’s a no-brainer to at least bank publicly if that’s available, and the only choice would be whether to bank privately instead. I just don’t get people who know about the public option and choose to not bank.

  24. One reason I wanted to bank DS’ CB was because a cousin is a leukemia survivor, and went through that not long before DS’ birth, so that possibility seemed quite real, and leukemia was the disease most cited as a scenario when banked CB was likely to be used.

    Most of the people I know who’ve had leukemia were diagnosed well into adulthood, as was the case in the article Ada posted, so I’ll continue to pay for storage unless we can donate the stored CB to the public bank.

  25. HM, your kids are younger than mine, so I know that both options were available by then. I remember a number of stories on the local TV news when the public bank opened, including interviews with the founding MD (who BTW is a pediatric oncologist).

  26. “By the time my last 3 kids were born, they were delaying cutting the cord to allow most of the blood to be reabsorbed by the newborn, as I recall. In any case, we didn’t seriously consider it.”

    How interesting – I have not heard of that but I have not been contemplating another child for several years. That probably makes more sense than immediately cutting it.

  27. “Now that youngest is off to college I’m planning to get out from the $50 annual storage fee.”

    What will you do with the CB?

    I plan to keep banking it for a while. Most of the leukemia victims I’ve known have been adults, and Wikipedia suggests that is more generally true.

    I need to ask the bank if they have a multi-year discount.

  28. The blood bank system does sound scammy, similar to time shares and fitness clubs. They’re bought in a fit of enthusiasm and then interest declines. Yet as Finn points out the need for stem cells is more likely to be in adulthood.

  29. “The blood bank system does sound scammy, similar to time shares and fitness clubs.”

    IME and IMO, that’s not the case for public CB banks.

    Locally at least, given how the public CB takes care of the details, I don’t see why people choose to not bank their kids’ CB.

    I’d guess that many of the parents who make that choice also have swabbed their cheeks for a marrow registry.

  30. At least when my youngest was born ~3 years ago, the ability to donate to the public bank was very limited by when your baby was born and whether it was a time when the hospital was staffed with someone from the bank. And this was at one of the busiest OB departments in the country (10,000+ babies/year). And I believe it was the only hospital in the area that even had a public bank option.

  31. Birdie, can I ask you about one other part of that experience that I thought was bad? The hoslital supported breast feeding in theory, but not in practice. DS was born in the morning, but there was no lactation consuktant available. Turns out nursing was really easy for us, so no need for one, but how do they have a woman there in labor for hours and then not know they need to have someone pop in and say hi? Second way breastfeeding was undermined was the free packs of formula with bag and a couple devices that every mom received. But most ridiculous was the lecture–I kid you not–on nursing that every mom was required to attend. There must’ve been nearly 20 of us gathered round for that. Idk how long it was, but long enough that baby got hungry, so we nursed. Two hospital staff memebers came over to tell me to cover up; there were dads in attendance at the lecture on mechanics of breast feeding who might be offended at the sight of a woman actually feeding a child at her breast! Was it that way at the “big hospital” too?

  32. The model Laura describes using for her daughter sounds most reasonable, a win for everyone. That must be why it didn’t become widespread.

  33. S&M – my experience may have/was been different because my first baby was in the NICU. The NICU had its own lactation consultants that were super helpful and involved. Someone (nurse, just standard protocol when someone’s baby goes to the NICU?) had a pump sent to my room before I even saw my baby for the first time and the nurse helped me with that. And then I had regular help throughout his stay by the lactation consultants.

    For subsequent babies, the LCs stuck their heads in at some point but I declined their services.

    Definitely no lecture! That is crazy. I can’t remember about formula. I wasn’t opposed at all and gave some to my babies, but I can’t remember if I asked or they offered.

  34. I donated the cord blood from DD because she is mixed race and I had read that there are relatively few matches for our specific mix. I would not have paid to preserve it, but I figured if anyone else could use it, they were welcome to it.

    At my OB practice in Manhattan in ’08, we were the first family to donate, but my OB said most people in her practice were banking it privately at that point. We had to do it though the cord blood bank in NJ.

    The second two were born in another state without a donor bank available, so we did not save it.

    Sorry I’ve been gone all summer. Back now and returning to work in a few weeks, so will have some new topics to add to the rotation as I figure out how to manage my new life….

  35. Finn – it would be interesting if the marrow registry option was offered as part of an annual physical. As I noted before, if it is so lifesaving and is otherwise considered medical waste, why aren’t more hospitals pushing the public cord blood banking as a checkbox on the registry form? Could it further research or save lives today? Or did the premise for CB stem cell use not prove out in reality?

  36. Sky, so exciting that you’re going back to work! I’ll send CoC a re-do of a topic we once did on the old site, desperation dinners, as kind of an office-warming for you!

  37. Sky, congratulations! I look forward to discussions. Baby WCE is potty trained, so life is seeming easier for me.

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