Talk to me about Cord Blood Banking please

[Mopey]

Hey all,

I know I am constantly asking for advice, opinions & experience but this is the best outlet I have so I truly hope you all don't mind another one!

The hubs and I are sure we would like to privately bank Mopey's cord blood so I am starting my research in earnest. I would love to know anything you may think is pertinent and/or any anecdotes about it you may have. It is pretty intimidating to sort it all out not knowing anyone who has done it.

Many, many TIA :)

[MamaMolly]

We banked Dolly's blood because I had a cousin who was diagnosed with lukemia a few months before she was born. We used Viacord because it was the one our doctor preferred and honestly I didn't have any real preference. They sent us the box/kit and had someone pick it up after delivery. Really, it was pretty easy. HTH

[GoBlue]

You should know that the American Academy of Pediatrics does NOT recommend cord blood banking (unless there is a known sibling with a condition that may be helped by cord blood) in their 2007 statement, but DOES recommend donation of cord blood for public use.

Here is a link to the statement:
http://aappolicy.aappublications.org/cgi/content/full/pediatrics;119/1/165

And here is the cut-and-pasted recommendation section:
Cord blood transplantation has been shown to be curative in patients with a variety of serious diseases. Physicians should be familiar with the rationale for cord blood banking and with the types of cord blood–banking programs available. Physicians consulted by prospective parents about cord blood banking can provide the following information:

1. Cord blood donation should be discouraged when cord blood stored in a bank is to be directed for later personal or family use, because most conditions that might be helped by cord blood stem cells already exist in the infant’s cord blood (ie, premalignant changes in stem cells). Physicians should be aware of the unsubstantiated claims of private cord blood banks made to future parents that promise to insure infants or family members against serious illnesses in the future by use of the stem cells contained in cord blood. Although not standard of care, directed cord blood banking should be encouraged when there is knowledge of a full sibling in the family with a medical condition (malignant or genetic) that could potentially benefit from cord blood transplantation.
2. Cord blood donation should be encouraged when the cord blood is stored in a bank for public use. Parents should recognize that genetic (eg, chromosomal abnormalities) and infectious disease testing is performed on the cord blood and that if abnormalities are identified, they will be notified. Parents should also be informed that the cord blood banked in a public program may not be accessible for future private use.
3. Because there are no scientific data at the present time to support autologous cord blood banking and given the difficulty of making an accurate estimate of the need for autologous transplantation and the ready availability of allogeneic transplantation, private storage of cord blood as "biological insurance" should be discouraged. Cord blood banks should comply with national accreditation standards developed by the Foundation for the Accreditation of Cellular Therapy (FACT), the US Food and Drug Administration (FDA), the Federal Trade Commission, and similar state agencies. At a minimum, physicians involved in procurement of cord blood should be aware of cord blood collection, processing, and storage procedures as shown in Table 2.

[edurnemk]

We used CBR and we were very pleased with the service and customer service. Our other option was Viacord, after all my research I feel those are the 2 best private banks.

I know private banking is not necessary for everyone, but for our personal and family circumstances it was the best choice.

[Pyrodjm]

We chose to delay clamping cutting the cord until it had stopped pulsing. I ended up delivering the placentas before we got around to cutting them actually. I'm pretty sure this makes banking impossible, but has other benefits. From what I've read, it is very beneficial for newborns to get all of their blood, including what is still in the cord and placenta at birth. Supposedly, it lessens the likelihood of jaundice and anemia.

ETA: We would not consider using the blood at a later time so banking blood for later use was not a concern for us.

[Trigglet]

I read up on it and asked my OB - she did not recommend it at all. It's a new and entirely unregulated (money-making) industry with no guarantees or safeguards. I also preferred to delay cord clamping so that DS got the cord blood. I worry that these companies prey on parents' fears about very, very small chances of a limited number of conditions without being at all clear about the chances of you actually being able to use the cord blood if you needed it. Public cord blood banking is a different proposition, I think, and I would recommend donating, as my understanding is you are as likely to be able to use donations from a public bank or your own child as to use his or her own cord blood.

I am not criticising those people who have chosen to do it, but I think people need to be absolutely clear going in what exactly they're getting and what the risks actually are. It's not some silver bullet.

[boogiemomz]

Don't want to offend anyone either, but I also strongly recommend donating to a public bank. I worked for 2 years for a public cord blood bank and we received extensive training in cord blood collection, and there were strict guidelines for what constitutes a viable unit that might eventually be used for transplant. For instance, if it wasn't at least 40cc's in volume, it was officially a "low volume" unit that would not be adequate for transplant. But a private bank might charge you to store 10cc's of blood and never mention a thing about it, even though there's no way that unit could be used therapeutically. I even saw some patients come in with private collection kits that contained a 10cc syringe. They also can't guarantee the manner in which the blood is collected, and lots of doctors don't really want anything to do with it. Will they clean/disinfect the cord properly? Will they inspect the placenta for tears (risking mixing of maternal blood with fetal blood, rendering the unit inappropriate for storage)? Again, we received extensive training in collection methods, and the criteria that a unit must meet to be stored for transplant are pretty elaborate. The private banks don't have nearly such stringent guidelines, they're just happy to be hired.

The other thing people don't always think about, and private banks wouldn't dare mention, is this. The likelihood of any particular child developing a disease that might be treated with cord blood is obviously very low. But beyond that, in the event that one of these diseases were to develop, the odds that that child's cord blood could be used for his own treatment are almost zero. Because the same genes of the child who is ill are also present in the cord blood cells, and these diseases are usually genetic in nature, at least partially. Another exclusion criteria that applies in public banking is that if ANYONE in the immediate family of the newborn whose blood is being collected (or the immediate family of the child's parents, if I am remembering correctly) has a history of or develops cancer, aplastic anemia, SCIDS, or any other genetic/blood disease, the unit cannot be used for transplant. So the odds of a privately collected/stored cord blood unit being appropriate for treatment of a family member are EXTREMELY low, much, MUCH lower than just the odds of someone developing one of the diseases.

I realize you were asking for advice about private banks only, and I apologize for jumping on my soapbox and hijacking. This is just something I'm really passionate about (and I do know a little something about it). I also believe that these private banks are preying on parents' worst fears to make $$$, and I'm not particularly anti-corporation, not occupying anything, etc. :) If you are absolutely set on private banking, that is of course your business, just blow this off. Good luck with your delivery, and I wish you all the best!

[Mopey]

Thank you so much to everyone for posting. THIS is exactly why I am finding these boards so invaluable and so helpful to me during this time! I can't tell you how much I appreciate all the feedback.

I went to meet my dear friends new son today (OMGosh he is CUTE!!! :)) and this was one of the things we discussed. It was interesting to find out that she, and a number of other people we know (including three docs) all chose not to bank but donated publicly or for research (she did not have enough volume so donated the tissue, etc.). This has given the hubby and I a lot of food for thought. Boogiemomz - I totally appreciate the soapbox when one knows what they are talking about!! Especially as there has been cancer in my immediate family.

Anyway, thanks again and keep the info coming if you'd like :)

[edurnemk]

The other day at my dentist's office I saw some brochures for stem cell banking from baby teeth, I think this is the company: www.bioeden.com I have NO IDEA about this, but it might be worth looking into as an alternative.

As I said in my pp, we did cord blood banking for DS. Back then I didn't know about delayed clamping, but for this baby I'm considering it. We haven't made up our minds. IF the baby teeth thing is legit, we may consider it as an alternative to cord blood banking.

When choosing a company the last time I really looked into them, even checked adverse event reports with the FDA. Many of my friends chose a cheaper option but I had read about their methods of collection failing, for example. So I agree there's lots of iffy companies out there, so do your research.

[AnnieW625]

I read up on it and asked my OB - she did not recommend it at all. It's a new and entirely unregulated (money-making) industry with no guarantees or safeguards. I also preferred to delay cord clamping so that DS got the cord blood. I worry that these companies prey on parents' fears about very, very small chances of a limited number of conditions without being at all clear about the chances of you actually being able to use the cord blood if you needed it. Public cord blood banking is a different proposition, I think, and I would recommend donating, as my understanding is you are as likely to be able to use donations from a public bank or your own child as to use his or her own cord blood.

I am not criticising those people who have chosen to do it, but I think people need to be absolutely clear going in what exactly they're getting and what the risks actually are. It's not some silver bullet.

This is how DH and I felt too. While serious diseases are out there it was also kind of a morbid think to think about when having a baby.