How do we decide what to do with our baby's cord blood?
March 30, 2012 11:08 AM Subscribe
Should we store our baby's cord blood and if so, with whom? How do you judge all of the conflicting information on this? Can we delay cord clamping and still store the blood?
As far as I can tell, no one has asked this question in about 3 years and I assume the field has developed in that time. So, here are my questions:
1a. Should we store our baby's cord blood? I know that the odds are thankfully very low that we will need this cord blood, but if we did and didn't have it, I would not be able to live with myself. That would be devastating. (So, is that my answer to this first question? If you don't think so, please tell me why).
1b. And in a related question: What are the chances that the collection will be viable?
2. If we should store it, with whom? It seems like the most popular companies are quite aggressive in their marketing to the point of suggesting they are the only right choice. I cannot judge between their claims regarding collection techniques, anticoagulants used, testing methods, storage techniques, etc. Cord Blood Registry, for example, seems to suggest that their anticoagulant is better and the only one that should be used. They suggest others don't use it because of the price.
To avoid what might be manipulative marketing, I went to the National Marrow Donor Program's website and looked at the banks they use when you donate your cord blood. I looked up each bank and found one that also offers private storage and another that offers private storage when you go through a third party in Atlanta that sets up the contracts. For the first year (collection, etc. and 1 year storage), the bank that offers private banking directly is about $1400. I think that is about $800 less than Cord Blood Registry, which seems to be the most expensive private bank. I'm thinking that if the NMDP picked this bank, they must collect and store the blood in a way that meets high standards. Am I wrong?
Some are picked by the NMDP, some are certified by AABB, some by the FDA and others by FACT. What is the significance of these?
3. Finally, we would like to delay cord clamping. We are doing Hypnobirthing and our doula argues that it is very beneficial to delay cord clamping until the umbilical cord stops pulsating. If we do this, can we still bank our baby's cord blood? If not, which is more important delaying or storing?
Thank you to all!
As far as I can tell, no one has asked this question in about 3 years and I assume the field has developed in that time. So, here are my questions:
1a. Should we store our baby's cord blood? I know that the odds are thankfully very low that we will need this cord blood, but if we did and didn't have it, I would not be able to live with myself. That would be devastating. (So, is that my answer to this first question? If you don't think so, please tell me why).
1b. And in a related question: What are the chances that the collection will be viable?
2. If we should store it, with whom? It seems like the most popular companies are quite aggressive in their marketing to the point of suggesting they are the only right choice. I cannot judge between their claims regarding collection techniques, anticoagulants used, testing methods, storage techniques, etc. Cord Blood Registry, for example, seems to suggest that their anticoagulant is better and the only one that should be used. They suggest others don't use it because of the price.
To avoid what might be manipulative marketing, I went to the National Marrow Donor Program's website and looked at the banks they use when you donate your cord blood. I looked up each bank and found one that also offers private storage and another that offers private storage when you go through a third party in Atlanta that sets up the contracts. For the first year (collection, etc. and 1 year storage), the bank that offers private banking directly is about $1400. I think that is about $800 less than Cord Blood Registry, which seems to be the most expensive private bank. I'm thinking that if the NMDP picked this bank, they must collect and store the blood in a way that meets high standards. Am I wrong?
Some are picked by the NMDP, some are certified by AABB, some by the FDA and others by FACT. What is the significance of these?
3. Finally, we would like to delay cord clamping. We are doing Hypnobirthing and our doula argues that it is very beneficial to delay cord clamping until the umbilical cord stops pulsating. If we do this, can we still bank our baby's cord blood? If not, which is more important delaying or storing?
Thank you to all!
I asked my OB about this just yesterday, and she said she didn't think private storage was worth the cost for someone unlikely to need to it. She said in the unlikely event you need cord blood, you could go through to the public bank. So consider donating your cord blood to that if your facility participates (ours, unfortunately, does not).
posted by ThePinkSuperhero at 11:19 AM on March 30, 2012 [2 favorites]
posted by ThePinkSuperhero at 11:19 AM on March 30, 2012 [2 favorites]
1. I think that is your answer. I stored both babies cord blood for the exact same reason.
1b. I have no idea.
2. I went with Cryocell basically because they are closer to where I live. It seemed to me that all of the companies had positives and negatives so,.... I just kinda winged it.
3. I had a breech baby c-section and was denied a VBAC so I can't answer this question. I bet the customer service people at any of the blood banks can tell you though.
Congratulations on the new human!
posted by PorcineWithMe at 11:20 AM on March 30, 2012
1b. I have no idea.
2. I went with Cryocell basically because they are closer to where I live. It seemed to me that all of the companies had positives and negatives so,.... I just kinda winged it.
3. I had a breech baby c-section and was denied a VBAC so I can't answer this question. I bet the customer service people at any of the blood banks can tell you though.
Congratulations on the new human!
posted by PorcineWithMe at 11:20 AM on March 30, 2012
My wife and I had a baby two days ago. Know that if you donate the cord blood you will be able to use it yourself, in the unlikely event that it is necessary, if no one else has.
Every bit of research I did on this suggested this practice is basically a scam for all but a very small number of people, who likely already know they'll need the blood. We donated with a clear conscience.
posted by gerryblog at 11:31 AM on March 30, 2012 [3 favorites]
Every bit of research I did on this suggested this practice is basically a scam for all but a very small number of people, who likely already know they'll need the blood. We donated with a clear conscience.
posted by gerryblog at 11:31 AM on March 30, 2012 [3 favorites]
The National Cord Blood Association, who you would expect to be in favor of cord blood banking, says:
...the American Academy of Pediatrics (AAP) and many physicians do not recommend private cord blood banking except as “directed donations” in cases where a family member already has a current need or a very high potential risk of needing a bone marrow transplant. In all other cases, the AAP has declared the use of cord blood as "biological insurance" to be "unwise." [Read the AAP's news release at http://www.aap.org/advocacy/archives/julcord.htm ]
posted by judith at 11:35 AM on March 30, 2012 [5 favorites]
...the American Academy of Pediatrics (AAP) and many physicians do not recommend private cord blood banking except as “directed donations” in cases where a family member already has a current need or a very high potential risk of needing a bone marrow transplant. In all other cases, the AAP has declared the use of cord blood as "biological insurance" to be "unwise." [Read the AAP's news release at http://www.aap.org/advocacy/archives/julcord.htm ]
posted by judith at 11:35 AM on March 30, 2012 [5 favorites]
You're better off delaying cord clamping than saving the cord blood:
"Delayed cord clamping, compared with early clamping, resulted in improved iron status and reduced prevalence of iron deficiency at 4 months of age, and reduced prevalence of neonatal anaemia, without demonstrable adverse effects. As iron deficiency in infants even without anaemia has been associated with impaired development, delayed cord clamping seems to benefit full term infants even in regions with a relatively low prevalence of iron deficiency anaemia."
posted by Dragonness at 11:39 AM on March 30, 2012 [7 favorites]
"Delayed cord clamping, compared with early clamping, resulted in improved iron status and reduced prevalence of iron deficiency at 4 months of age, and reduced prevalence of neonatal anaemia, without demonstrable adverse effects. As iron deficiency in infants even without anaemia has been associated with impaired development, delayed cord clamping seems to benefit full term infants even in regions with a relatively low prevalence of iron deficiency anaemia."
posted by Dragonness at 11:39 AM on March 30, 2012 [7 favorites]
So, if you do as gerryblog suggests (2 above), you reap 99% of the benefits of knowing it's available, and 10x the advantage of knowing someone may benefit if it's needful.
And might I add: industries that prey upon the fears of new parents will fester in one of the mid-level circles of hell someday.
posted by IAmBroom at 11:40 AM on March 30, 2012 [1 favorite]
And might I add: industries that prey upon the fears of new parents will fester in one of the mid-level circles of hell someday.
posted by IAmBroom at 11:40 AM on March 30, 2012 [1 favorite]
Delaying cord clamping lets the blood flow into the baby, you end up with a pale cord drained of the blood. There's nothing to save.
posted by Dragonness at 11:42 AM on March 30, 2012
posted by Dragonness at 11:42 AM on March 30, 2012
We were faced with this same decision a year ago. From my research no one has successfully used their stored "just in case" cord blood. There is an immediate benefit to the baby with the delayed cord cutting and a hypothetical benefit maybe in the future for banking. We chose the delayed clamping and used the $2000 to start his university fund. No regrets.
posted by saradarlin at 11:57 AM on March 30, 2012 [5 favorites]
posted by saradarlin at 11:57 AM on March 30, 2012 [5 favorites]
It seems like the most popular companies are quite aggressive in their marketing
Yes, and your fears are getting in the way of your good judgment (which is why there are so many businesses existing solely to scam new parents; we're unusually vulnerable at that point) -- under normal circumstances you would be easily able to recognise the aggressive, somewhat nonsensical marketing as a huge red flag, the first tip-off to its scamminess.
posted by kmennie at 12:18 PM on March 30, 2012
Yes, and your fears are getting in the way of your good judgment (which is why there are so many businesses existing solely to scam new parents; we're unusually vulnerable at that point) -- under normal circumstances you would be easily able to recognise the aggressive, somewhat nonsensical marketing as a huge red flag, the first tip-off to its scamminess.
posted by kmennie at 12:18 PM on March 30, 2012
A member of my immediate family does have Lymphoma and we consulted with his blood cancer specialist at Sloan Kettering who said storing cord blood was total useless, even for us.
posted by beckish at 12:28 PM on March 30, 2012
posted by beckish at 12:28 PM on March 30, 2012
You have finite resources. As a parent, it seemed like cord blood was probably not the best investment in my child's future.
IMO, you'll reap way more benefit by spending that money on a safer car, better education, healthier food, etc. It's pretty rare to see a return on any investment made because someone scared you into buying a service.
posted by pjaust at 12:35 PM on March 30, 2012 [2 favorites]
IMO, you'll reap way more benefit by spending that money on a safer car, better education, healthier food, etc. It's pretty rare to see a return on any investment made because someone scared you into buying a service.
posted by pjaust at 12:35 PM on March 30, 2012 [2 favorites]
When my son was being born, there was meconium in the fluid when my water broke. This wasn't a big emergency, but what it meant is that things got HECTIC. Even though I had it in my birth plan that we wanted to donate the cord blood, by the time he was out and had been whisked off to the pediatric nurses (we wouldn't have been able to delay clamping in that instance) there was just so much going on that it didn't happen.
Which is to say both that you might not be able to donate under some circumstances, depending on how the birth goes and also that if you do want to, you need to make this very, VERY clear before things get hectic.
Also: I was advised by my OB to donate the cord blood to the public bank. The private ones were charging a lot of money for a service that not only would I be unlikely to ever use, but were I to need the blood the odds that the public bank wouldn't have it would be astronomically low.
posted by sonika at 1:32 PM on March 30, 2012
Which is to say both that you might not be able to donate under some circumstances, depending on how the birth goes and also that if you do want to, you need to make this very, VERY clear before things get hectic.
Also: I was advised by my OB to donate the cord blood to the public bank. The private ones were charging a lot of money for a service that not only would I be unlikely to ever use, but were I to need the blood the odds that the public bank wouldn't have it would be astronomically low.
posted by sonika at 1:32 PM on March 30, 2012
1. You can, and public banks are arguably a good thing, but best practices for your baby mean your donation is less likely viable for someone else's use.
2. Just forget the whole private storage idea entirely. Every reputable medical organization warns against storing cord blood in private banks.
Private banks don't follow the strict regulations pf public banks. For a public bank, you have to contact the public bank prior to the 34th week of pregnancy so that these guidelines can be followed to even make the cord blood acceptable as a donation.
Not only that, private banks charge a lot of money for storing that cord blood, even though their storage method might mean it won't even be a viable option.
And private storage is not the better option from a purely selfish standpoint, either. Children with genetic diseases probably shouldn't use their own cord blood, nor should their siblings, for the obvious reason that their genetics are encoded in their blood, including the illnesses.
American Academy of Pedriatricians:
"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."
3. Delaying is best. AAP again, "if blood cord clamping is done too soon after birth, the infant may be deprived of a placental blood transfusion, resulting in lower blood volume and increased risk for anemia"
So you would do more damage to your baby by clamping right away, and even in the very small likelihood that your child should benefit from cord blood stem cells, you'd be better off getting that from the public bank, from someone else's donation.
posted by misha at 3:07 PM on March 30, 2012 [1 favorite]
2. Just forget the whole private storage idea entirely. Every reputable medical organization warns against storing cord blood in private banks.
Private banks don't follow the strict regulations pf public banks. For a public bank, you have to contact the public bank prior to the 34th week of pregnancy so that these guidelines can be followed to even make the cord blood acceptable as a donation.
Not only that, private banks charge a lot of money for storing that cord blood, even though their storage method might mean it won't even be a viable option.
And private storage is not the better option from a purely selfish standpoint, either. Children with genetic diseases probably shouldn't use their own cord blood, nor should their siblings, for the obvious reason that their genetics are encoded in their blood, including the illnesses.
American Academy of Pedriatricians:
"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."
3. Delaying is best. AAP again, "if blood cord clamping is done too soon after birth, the infant may be deprived of a placental blood transfusion, resulting in lower blood volume and increased risk for anemia"
So you would do more damage to your baby by clamping right away, and even in the very small likelihood that your child should benefit from cord blood stem cells, you'd be better off getting that from the public bank, from someone else's donation.
posted by misha at 3:07 PM on March 30, 2012 [1 favorite]
Chiming in to agree with most stuff above. Per our doula: private banks are not (or are minimally?) overseen by federal regulations, so who knows what you're going to get? Delaying cord clamping will not leave enough blood to store or possibly even donate, so if you go that route you'll not be donating anyway.
If you do want to go with a private banking service, make sure the company you go with has some sort of money-back guarantee in case they don't store it correctly. It's a lot of money to be spending on something that may get screwed up the first day.
In our case, we will be delaying cord clamping, but attempting to donate anything that is left over.
posted by bibbit at 3:13 PM on March 30, 2012
If you do want to go with a private banking service, make sure the company you go with has some sort of money-back guarantee in case they don't store it correctly. It's a lot of money to be spending on something that may get screwed up the first day.
In our case, we will be delaying cord clamping, but attempting to donate anything that is left over.
posted by bibbit at 3:13 PM on March 30, 2012
I think the one thing most people don't think about (and what most convinced me), is the speed of new technological leaps in medicine. If you figure that the cord blood is viable for 10-12 years, then that's 10-12 years of advances in medicine. Right now, we are using autologous stem cells to speed fusion in spine cases - that wasn't being done 10 years ago! We draw your bone marrow and process it right there in the OR, during the surgery! What else is coming down the road? Will there be new uses for cord blood?
I just had to add to my answer because so many people are calling cord blood banking foolish. Is the cost ridiculous? Yes. For my family it was negligible, the price we paid(pay) for a maybe. An affordable gamble. Public cord blood banks have restrictions on what they will release the cord blood for whereas private banks do not. So, in the end, the answer to #1 is, if you can afford it easily and you feel compelled to bank your baby's cord blood then do it because you will never have a regret about it. If it's a financial stretch then either donate or don't do it because you will regret spending $2K if you never use it.
posted by PorcineWithMe at 7:52 PM on March 30, 2012
I just had to add to my answer because so many people are calling cord blood banking foolish. Is the cost ridiculous? Yes. For my family it was negligible, the price we paid(pay) for a maybe. An affordable gamble. Public cord blood banks have restrictions on what they will release the cord blood for whereas private banks do not. So, in the end, the answer to #1 is, if you can afford it easily and you feel compelled to bank your baby's cord blood then do it because you will never have a regret about it. If it's a financial stretch then either donate or don't do it because you will regret spending $2K if you never use it.
posted by PorcineWithMe at 7:52 PM on March 30, 2012
Please donate your baby's cord blood. It is an un replaceable resource for someone who needs a stem cell transplant and who cannot find a matched donor. Because the stem cells in a cord blood are the progenitors of a very immature immune system, a cord blood does not have to be perfectly matched the way an adult donor does. I have a beautiful 18 year old patient now who will be having a double cord transplant in a few weeks. She would not have this chance to cure her leukemia if it were not for the parents who donated their babies' cord blood a few years ago.
posted by SLC Mom at 4:33 PM on March 31, 2012
posted by SLC Mom at 4:33 PM on March 31, 2012
I wanted to note that I applaud the original poster for really giving this decision a lot of thought and asking questions. When I was pregnant with my older son seven years ago, I thought about cord blood banking, but I really didn't check into it, ask questions, or do any research. I asked my midwife about it, and I blindly followed her bad advice to drop it.
In hindsight, I wish I would have checked into it more and made an educated decision. It's a tremendous regret in my life that I didn't make an informed decision, and I worry that someday one of my sons could get sick and could have benefitted from that cord blood that I threw away.
posted by JenniferR at 6:48 AM on April 5, 2012
In hindsight, I wish I would have checked into it more and made an educated decision. It's a tremendous regret in my life that I didn't make an informed decision, and I worry that someday one of my sons could get sick and could have benefitted from that cord blood that I threw away.
posted by JenniferR at 6:48 AM on April 5, 2012
Response by poster: I just wanted to follow-up here in case anyone checks back.
Our OB says that in 15 years one group of people is going to be laughing at the other. He just doesn't know which group it will be. I'd hope those who stored wouldn't laugh at others, but that aside, I appreciate his point. We just don't know.
To comfort JenniferR, I would say that what I've heard so far is that even with some conditions your child might get, it would not be appropriate to give the sick child his or her own cord blood, because the cancer would genetically be in the cord blood. When I ask, I have yet to find a circumstance where someone stored their child's cord blood and then used it.
That said, as my OB suggested, we just don't know what they might figure out in the coming years. They are looking at all sorts of illnesses and possible uses of cord blood.
To avoid the scammy marketing that is out there on this issue, I went to the National Marrow Donor Program website and looked at the bank's they use for public donations. I went to each banks website and found one that also offers private storage. They are called Cord for Life and they currently charge $1400 for everything through the first year of storage and then $120 a year thereafter. This is significantly less than the major private companies who market so aggressively. In addition, Cord for Life, unlike the other private companies I looked at, will test the sample when it comes in and if there is not enough or it is not viable, they will refund everything except a $150 administrative fee. The only catch is that to keep their prices low, they use fed ex, so if you deliver after a certain time on a Friday or before a certain time on a Sunday, there will be a fee of up to $300 for a medical courier. The woman I spoke with said that by Sunday afternoon, they could wait for Monday morning to save me the cost.
As for other concerns, they are located in FL, but inland. The cord blood is stored in a steel reenforced room with no windows. They have a generator that will last two weeks and they are on the same priority level as the hospital for getting power turned back on. They have been in business since 1993, but if they ever had to close, their policy is that they would give us an option of three different banks with similar storage policies to transfer our cord blood.
I asked if they had any discounts and currently they are offering an additional year of storage and a 12-month (interest and fee free) payment plan for the same $1400 price. (Usually their payment plan is 6-month). If you are reading this months or years later, just ask this question up front. You never know what they might offer.
Ultimately we have decided that for this price we will take the chance and store the blood. The hospital we are using does not currently offer public donations, so that was not an option for us. They are adding it soon, but not in time for us. We will delay cord clamping for a moderate amount of time and see what we get for storage. In the worst case, we will be out $150 (or $450 if it happens on a weekend). We are going into this knowing that it might be useless in the end, but we have decided that this is what we want to do. I also believe that we will have the option of donating the cord blood in future years if that turns out to be a better option.
Many thanks to everyone who took the time to offer answers.
posted by Original 1928 Flavor at 1:59 PM on April 12, 2012 [1 favorite]
Our OB says that in 15 years one group of people is going to be laughing at the other. He just doesn't know which group it will be. I'd hope those who stored wouldn't laugh at others, but that aside, I appreciate his point. We just don't know.
To comfort JenniferR, I would say that what I've heard so far is that even with some conditions your child might get, it would not be appropriate to give the sick child his or her own cord blood, because the cancer would genetically be in the cord blood. When I ask, I have yet to find a circumstance where someone stored their child's cord blood and then used it.
That said, as my OB suggested, we just don't know what they might figure out in the coming years. They are looking at all sorts of illnesses and possible uses of cord blood.
To avoid the scammy marketing that is out there on this issue, I went to the National Marrow Donor Program website and looked at the bank's they use for public donations. I went to each banks website and found one that also offers private storage. They are called Cord for Life and they currently charge $1400 for everything through the first year of storage and then $120 a year thereafter. This is significantly less than the major private companies who market so aggressively. In addition, Cord for Life, unlike the other private companies I looked at, will test the sample when it comes in and if there is not enough or it is not viable, they will refund everything except a $150 administrative fee. The only catch is that to keep their prices low, they use fed ex, so if you deliver after a certain time on a Friday or before a certain time on a Sunday, there will be a fee of up to $300 for a medical courier. The woman I spoke with said that by Sunday afternoon, they could wait for Monday morning to save me the cost.
As for other concerns, they are located in FL, but inland. The cord blood is stored in a steel reenforced room with no windows. They have a generator that will last two weeks and they are on the same priority level as the hospital for getting power turned back on. They have been in business since 1993, but if they ever had to close, their policy is that they would give us an option of three different banks with similar storage policies to transfer our cord blood.
I asked if they had any discounts and currently they are offering an additional year of storage and a 12-month (interest and fee free) payment plan for the same $1400 price. (Usually their payment plan is 6-month). If you are reading this months or years later, just ask this question up front. You never know what they might offer.
Ultimately we have decided that for this price we will take the chance and store the blood. The hospital we are using does not currently offer public donations, so that was not an option for us. They are adding it soon, but not in time for us. We will delay cord clamping for a moderate amount of time and see what we get for storage. In the worst case, we will be out $150 (or $450 if it happens on a weekend). We are going into this knowing that it might be useless in the end, but we have decided that this is what we want to do. I also believe that we will have the option of donating the cord blood in future years if that turns out to be a better option.
Many thanks to everyone who took the time to offer answers.
posted by Original 1928 Flavor at 1:59 PM on April 12, 2012 [1 favorite]
This thread is closed to new comments.
We are planning on donating, and were told that 3) we would need to clamp the cord right away, but that the difference is minimal.
posted by Oktober at 11:17 AM on March 30, 2012