Wondering what to do with your baby’s cord blood? Park Slope Parents members discuss the pros and cons as well as deliberating public vs. private cord blood banks. Here are some tips and insights as well as some resources for further research.
Disclaimer: ParkSlopeParents.com is not intended to—and does not—provide medical advice, diagnosis, or treatment. Never disregard professional medical advice, or delay in seeking it, because of something you have read on the PSP Yahoo! Group or on the www.parkslopeparents.com website.
Cord blood: To bank or not to bank?
Good Read: On Cancer: How Do I Decide Whether I Should Bank Cord Blood from My Newborn? | Memorial Sloan Kettering Cancer Center (2015)
Why banking your newborn’s cord blood could be useful:
Think of core blood banking as a type of insurance policy: “I banked my child’s blood, and I am glad I did it. If we never use it, fine; if we ever need to, how fantastic will it be that it is there? I want to encourage research that takes advantage of this type of stuff. I also reviewed cases where cord blood was used, and it was enough to convince me that those 200 bucks (or whatever it was) and 50 bucks a years was no big deal. My midwife retrieved the blood just prior to the cord being cut; it was no big deal. When I think of how most babies are born these days, I think a little cord blood retrieval is just not that big a deal. The transfer from cord sustenance to air/breast sustenance is 90% over by the time they do this. So, again, I may be going against the grain here, but I think that this type of retrieval and all that it portends for stem cell research is wonderful. I had looked into it during my pregnancy and spoken to a few stem-cell types who thought there was too remote a chance of being helpful to justify paying the large sums they charge. After much research and speaking to my brother (who is an orthopedic surgeon), we decided to bank our baby's cord blood with CBR. Right now, stem cells are used for fighting leukemia, but the thought is that someday the cells could help fight additional diseases for your family and your baby; mostly, it's a kind of insurance.”
It can help a sibling: “Cord blood banking #2 could be useful for #1. Remember, a lot of illnesses that would be treated with cord blood start in the blood - leukemia's and many genetic issues. Therefore, if it's the child that has banked his cord blood banked that gets ill, it's very unlikely they would use that cord blood since the illness is also in there.”
It could help in the event of an illness, like leukemia: “As to whether cord blood banking is important, I look at it this way. My family has been plagued by some illness and genetic anomalies (dwarfism, Asperger's, breast cancer in just about everyone, pancreatic cancer without any known cause, diabetes, etc.) and if something happened to my child or anyone's child for that matter, that might benefit from cord blood, the money spent is well worth it to me. With the (thank God) welcome changes for stem cell research, that benefit will surely happen more quickly. CBR will work with you if you can't afford the huge outlay. There are some "free" and/or low cost donation sites, however, be careful. What turned me off was the issue of whose cord blood would be given to my child in the case of an emergency. There was no guarantee. While HLA matching is sophisticated, if there is a true emergency, the knowledge that I can quickly and assuredly access my baby's blood is peace of mind, like an insurance policy. Most cord blood banks donate for research and store, but not all. Perhaps things have changed or someone out there knows more. Ask around. CBR turned out to work very well for us. Here's the website.”
Opting for delayed cord clamping can benefit baby:
“We were encouraged to consider public banking instead, as it can do some good now. We thought that was a great idea...until we started reading new research on the timing of cord clamping and realized that if we were to bank cord blood -- for private *or* public use -- we'd have to forego delayed clamping in order to harvest the blood. As we're increasingly convinced of the benefits of delaying cord clamping, we've decided not to do banking.”
Another PSP member writes: “Honestly, we have struggled with this issue. At first we definitely wanted to do cord blood banking. The cost was just something that we would unpleasantly swallow. We happen to have several friends & relatives in the medical industry and were shocked when most advised against it. After sifting through mountains of research, we finally decided to do delayed cord clamping instead of cord blood donation. Our final rationale was that there is definite benefit to delayed clamping whereas the benefit of cord banking was questionable for us. Our families also do not have history of the blood diseases currently curable with blood banking.”
Donating cord blood is encouraged by some medical institutions and is also an option worth considering:
“Public cord banking is the way to go since it could be useful to other's out there, instead of only for the off chance it's compatible with others in your immediate family.”
And as another parent shares: “This issue is super overwhelming and even fear inducing. For many reasons, both clinical and ethical, banking with a non-profit organization is currently recommended by all of the major authorities in this area. Here is a link to a very recent article from the Memorial Sloan Kettering website. It contains info from a peds hematologist-oncologist there who is also the director of the National Cord Banking Program."
“I second the recommendation to publicly bank cord blood. We decided to privately bank my 3rd child's cord blood because my oldest has a genetic syndrome in which leukemia is more prevalent than in the general population. By some strange twist of fate, I, not he, was diagnosed with leukemia two years ago. My only hope for a cure was a bone marrow transplant. However, I had some bizarre protein that made finding a bone marrow match extremely difficult. My daughter's banked cord blood was not a match either. Luckily, my doctor found 2 cord blood matches for me from the public cord blood bank. I had my transplant in August 2011 and am now leukemia free. Please, please, please bank your babies' cord blood. You might save a life.”
“I thought donating was best since my children are bi-racial and multi-ethnic. I figured if we're lucky our kids will never need it, but if they or someone else does, it's out there just in case.”
While donated samples can be used for others or research, it’s likely your sample will still be available should you ever need it:
“We also donated our son's cord blood through the NY Community Blood Bank. They will pick up from most major Manhattan hospitals (probably Brooklyn ones as well). They told me that about 10% of the donations are used, so there is a good chance that your child's blood will still be available if you need it. The potential negatives are that their samples can be used for research, not just for patient use. They also have moderate quality and quantity standards, so if you do not have enough cord blood, they won't bank it; I think this is an improvement over for-profit banks that will store whatever you give them, regardless of whether it is enough to be useful in the future.”
Consult donating your baby's core blood with the National Cord Blood Program:
"This is a public cord blood bank. It doesn't cost anything to donate, but there's no guarantee your cord blood will be there on the extremely small chance you need it. On the upside, if someone else needs it and matches, you could save a life. The site has an
interesting explanation of the difference between private and public banking. I don't think there's a wrong answer to this question because a lot of the science is still emerging, but I went this route because private banks are so expensive and I liked the idea of fostering a public venture that could benefit everyone.”
Start thinking about cord blood banking early, and have your arrangements made prior to delivery!
“One valuable thing I learned the hard way: don't look into it too late into your pregnancy. I contacted the potential banks too late (even for donating) - I would have had to contact them by my 32nd week or something like that.”
“To donate from other hospitals, you have to arrange in advance for a kit. You can find find info on the parentsguidecordblood.org site or on this site from one of the major donation places. One thing to note: Most of the donation centers require that you contact them before your 34th week.”
Check with your hospital to see which cord blood banks they work with, and which donation programs they participate in:
“I was hoping to do public donation, but . . . my hospital is not participating the public donation program, so I would have to make an arrangement in advance (prior to the 34th week in many cases, she warned).”
Don’t get blindsided—have your decision made before delivery:
“I resented having it asked of me just moments after the birth, when I really wasn't "me," if you know what I mean. I have worried ever since the collection. I couldn't imagine saying no to this doctor after she had just gotten me through the birth process.”
“The donation request from my doctor took place within minutes of my daughter's birth, when I wasn't focused on cord donation at all. Of course, I said, "yes, go ahead," as I would've felt like an ogre if I hadn't. Then, when my mother got sick recently, I fantasized that if I'd done the banking, I might be able to help "save" her, or bring her health back.”
Are private cord blood banks worth the money?
A few parents say core blood banking is not worth the money: “From all I've heard private banking is an expensive scam that feeds off parental fear. Try to have an off-the-record conversation about it with your doctor or midwife if he or she will. The evidence is not there to support the (large, for-profit) fees and the companies' materials really dance around the facts.”
It's hard to predict: “A genetic counselor told us that commercial blood cord banking is sort of...bunk...right now, which we thought was a pretty bold statement for someone whose bread-and-butter is screening/testing. The field is developing so rapidly, that what gets banked now will probably not hold much value (or be irreplaceable) in the future.”
According to some, core blood banking is rarely useful: "We recently decided not to bank cord blood for our second child. I am not a medical professional and this isn't medical advice. In the research I did (I believe Mayo Clinic website and perhaps Cleveland Clinic?) it sounded like cord blood samples are rarely useful to the actual person they belong to, for these reasons: 1) sample cells rarely are enough to treat people over 90 lbs., limiting length of time they would be helpful, 2) sample cells may not be useful for genetic diseases as they have the same genes, 3) sample not guaranteed to be viable. I came away from the research wishing that we had signed up in time to donate to a public bank, which apparently has greater utility for more people. I also sort of felt silly for doing private collection the first time. However, I realize there is a ton of information out there and I only read some of it, and I am by no means an expert. When I'd told our doctor and midwife that we planned to do cord blood collection (the first time), they were neutral and said they would collect it. When I said with the second child that we planned not to, they laughed a little and said they'd never do it, either. I get the impression that at least some medical professionals feel the science is not there yet for individual donations. But, I do plan to keep freezing the sample we did take, just out of a feeling of "what if?, I guess. However, the research and reaction I got at the doctor did make me feel better about NOT spending all that money the second time.”
PLACES TO DONATE CORD BLOOD:
RESOURCES FROM AROUND THE WEB:
***This page was last updated April 2014***