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Cord Blood Banking Basics
Get expert answers to your questions on cord blood storage.

Introduction

If you're a parent-to-be, you're probably familiar with the ads and brochures that invite you to bank your baby's umbilical cord blood to ensure his future health. You may also have heard of Molly Nash, a 6-year-old girl dying of Fanconi anemia whose life was saved by her 5-week-old brother's cord blood. What you're probably not familiar with, however, are the benefits of this choice and whether or not it's the right one for your family. To provide you with a clearer picture and help you make an educated choice about storing cord blood, we talked to a variety of experts to answer your common questions and concerns.

What Are the Benefits?

Cord blood contains stem cells, which are a foundation of the body's immune system. These cells can create parts of blood, bone marrow, and components of the immune system, such as white blood cells. For this reason, cord blood stem cells can be used to treat a variety of cancers, such as Hodgkin's disease and leukemia, as well as genetic diseases like sickle cell anemia, and immune system disorders such as severe combined immunodeficiency disorder, commonly known as "bubble boy disease."

Treatment for these illnesses often requires bone marrow cells, which are painful to harvest and require an identical biological match to work. A sibling has a 25 percent chance of being a perfect match, and of course someone outside the family has a much smaller chance of being a match. "Stem cells from cord blood can offer the same benefits of bone marrow and can be collected painlessly," says Joanne Kurtzberg, MD, director of the pediatric stem-cell transplant program at Duke University Medical Center and director of the Carolinas Cord Blood Bank in Durham, North Carolina. "Stem cells can also be used without a perfect biological match."

Here's the confusing part: If your child becomes sick with certain diseases, particularly a blood disease such as leukemia, he can't receive his own cord blood for treatment because it will contain the same immune weaknesses the child already has these saved cells also have the potential to become malignant.

"Storing cord blood is similar to getting life insurance," says Vivian J. Weinblatt, a genetic counselor and past president of the National Society of Genetic Counselors. "Your family may never need it, but if you store it, it's there."

And according to industry experts, there are a lot of exciting potential therapies for cord blood. Some researchers believe that at some point, it may be helpful in regenerating organs and nerves, and in treating Parkinson's disease, Alzheimer's disease, diabetes, stroke, spinal cord injury, multiple sclerosis, and lupus.

How Is It Done?
How is the cord blood harvested, and is it painful to the mother or the child?
About 3 to 5 ounces of cord blood are collected from the umbilical cord and placenta after the baby is born and the cord has been clamped and cut. The blood is then packaged in a collection kit provided by a cord blood bank. The process is completely painless. It's important that the blood be collected by a doctor or midwife who is knowledgeable about the collection procedure. It is only collected after the cord is clamped shut.

What happens to the blood after it's harvested?
It's packaged and sent to a cord blood bank, where it's tested for a variety of infectious diseases, including hepatitis and HIV. Then it's frozen and stored in the blood bank. According to industry experts, samples are viable for at least 10 years. Researchers believe that properly stored samples will be good for decades.

How much does it cost?
Private cord blood banks charge an initial processing fee of up to $1,500 and a yearly storage fee for the blood, which runs around $100. If the need arises, the bank provides you with your sample to use for treatment.

Are there public banks that store cord blood?
Yes, but they don't work the same way private banks do. These facilities store the blood free of charge, and it's distributed to any person in need. That means that if you need blood, you're probably not going to get the sample you donated. Instead, the public bank will do its best to find a sample that biologically matches you or your family member. That means there's a chance you won't find the right match for your needs. The blood and stem cells could save someone else's life.

Unfortunately, it's not easy to use public banks. According to Dr. Kurtzberg, only a few facilities nationwide store the blood, and only a handful of hospitals are able to collect it. If you really want to bank blood publicly, talk to your doctor to see if arrangements can be made.

I've been hearing a lot of controversial news about stem cells. How is this connected to cord blood?
The stem cells you hear about in the news come from human embryos, not cord blood. The reason embryonic stem cells are controversial is because there are political, cultural, and religious debates as to when life begins and whether or not it's ethical to do research on a form of life that may have had the potential to become a baby. The stem cells from a baby's cord blood after delivery are taken from the umbilicus and placenta of a healthy newborn and are not part of the controversy.

Is It Right for My Baby?
How long as stem-cell treatment from cord blood been around, and what are its success rates in treating disease?
"The first stem-cell transplant from cord blood occurred in 1988. Since then, there have been approximately 2,500 transplants worldwide," says Dr. Kurtzberg. About 40 to 50 percent of patients who undergo treatment are cured, depending upon their disease. However, as scientists discover more about the capabilities of these stem cells, those numbers could improve.

How do I know that banking cord blood is the right choice for my family?
You only get one chance to do it, so talk the decision over with your doctor. "If the research bears out, banking cord blood could become a standard of care," says Catherine Dundon, MD, an associate clinical professor of pediatrics at Vanderbilt University Medical School. "But as of right now, we don't have enough medical evidence to suggest that everyone should bank their child's cord blood." The American Association of Pediatrics does not recommend it for most families for this very reason. "Available research estimates the chances are between one in 50,000 to 200,000 that a child will use her blood," Dr. Kurtzberg says. "If your family has a history of childhood cancers, certain genetic diseases, or babies that die from unknown causes, it's a choice you may want to consider," she adds. "Your typical healthy family probably doesn't need to do it."

But what if you're not sure of your family's medical history? Weinblatt frames it this way: "If the money's not an issue and it can give you some peace of mind, it's something you may want to think about."

For More Information

ViaCord
800-998-4226

www.viacord.com

CORD
877-CORD-BLD

www.nycryobank.com

California Cryobank
800-400-3430

Cryo-Cell
800-786-7235

Cord Blood Registry
888-CORD-BLOOD

For public donation:
Carolina Cord Blood Bank

www.cancer.mc.duke.edu/CCBB

New York Blood Center

www.nybloodcenter.org

National Marrow Donor Program

www.marrow.org

From Our Readers: Why We Did or Didn't Bank Our Baby's Cord Blood
Fellow parents tell about how they came to their decisions.

Why They Did

Here's what our readers had to say on banking cord blood:

Reader One:
"We decided to bank the cord blood. Our child is of a mixed race (Caucasian and Chinese) which would make finding a match more difficult if the need arose. With all the advancements in the medical community going on right now, I feel that although our ability to effectively use the banked blood right now may be limited, each month I hear about other medical advancements that give me more confidence that we did the right thing.

"Parents will take out a life insurance policy on their child, spending as much as the cord blood banking costs, and not think anything of it. Banking the cord blood is just another type of insurance policy, but one that you will not have to wait until your child dies to collect -- this is one that may help your child live. The $2,000 for the collection and 18 years of storage was well worth that extra peace of mind.

"If we have another child, I will not hesitate to do this again."

Reader Two:
"Cryo-Cell only charges about $200 to bank it, plus shipping, plus $50 per year to store it. In my mind, this was not much money, compared to everything else I was already spending, for the possibility that it could someday save my child's life, no matter how small the chances. What if I did not bank it and then needed it someday? How much would I regret not banking it in that situation? Cryo-Cell only needed $50 down, plus shipping at the birth, and I could pay the remaining balance later. Of course, shipping is much higher on weekends, which is when my son was born.

"I will say, though, that the actual packaging of the blood after the birth was very complicated. There are packets of info for everyone, and lots of little jobs. My doctor missed my birth because he was at a memorial service for his wife's brother who died in the World Trade Center attack, so his partner had filled in. She collected the blood and then took off. The shift nurse also left. That left me and my doula (thank God I had her there) to package and ship it after being up all night with the birth. It took us about four hours to get everything done because we were so exhausted. I would recommend reading all materials, even those destined for others (doctors, nurses), beforehand. And reviewing everything that needs to be done with your doctor. And assigning the process to a friend who will be there after delivery. My baby was early so I had not had time to review everything and assign tasks."

Reader Three:
"We plan on banking our baby's umbilical cord. We decided to do so after our ob-gyn recommended we look into it. She made the suggestion for a few reasons -- our baby was conceived through in vitro fertilization and we really don't know if we'll be having any other children in the future (I am 27 and my husband is 26). Also, because I am of Mediterranean descent and my husband is Chinese, it would be more difficult to find a donor match (if necessary) than if we were the same race. Therefore, we decided it would be worth it to do so. We went with Viacord -- they are not the cheapest by any means -- but they had the best customer service around. We are very happy with our decision and look forward to our baby's birth in two weeks!"

Reader Four:
"We did bank our son's cord blood because we found a company that only cost a few hundred dollars and we felt that if we did it, we would probably never use it. But if we didn't, then we would need it someday. Just a layer of insurance."

Reader Five:
"I chose to bank our daughter Clarice's cord blood primarily due to our family history of disease. Once we enrolled, we found out that we couldn't have chosen a better thing to do, since I developed a blood disorder which can be passed from a mother to her child in utero. Fortunately, at this time she shows no sign of this disorder, but it is reassuring to know the stem cells are available if medical science research finds a way to use them to treat this condition.

"We feel we have given our daughter at least one step ahead in any future obstacles she may encounter by banking her cord blood."

Reader Six:
"When I learned that I was pregnant, I immediately began researching cord blood storage companies -- I knew that I would never forgive myself if my older son (he'll be 5 in July) were to relapse and the precious cells which could possibly be used to save his life were not available.

"Had my son not been diagnosed with acute lymphoblastic leukemia (ALL) in October 1999, and/or I had not miscarried during my second pregnancy, I do not know if I would have chosen to store my daughter's cord blood. When your child is being treated for cancer, you witness the ups and downs of modern medicine. Unfortunately some of my son's friends from the hospital haven't been as lucky -- chemo doesn't work, bone marrow matches for a transplant cannot be found, or secondary complications arise. Taking these factors into consideration, the $95 annual storage fee is the best insurance for my son's future at this time.

"How long we will store these cells remains unanswered. At some point, my family will probably get HLA testing done to see how close of a match to my son we are, something we have not needed to do since he continues to respond to his chemotherapy treatment."

Reader Seven:
"My husband and I decided to bank our baby's umbilical cord blood. We did so because I was adopted and don't know my family history. I pray that we never have to use it, but it puts our minds a little at ease knowing we have access to it. My ob-gyn also said he thought it was a good idea, and the nurse practitioner at his office had a baby three weeks before me and she did it."

Reader Eight:
"We chose to bank the cord blood of both of our children. We have two boys under 2 years old. We do not have a lot of money, but could not pass up the opportunity to be better prepared if (God forbid) one of our children were to be stricken by disease at an early age. There is still a lot of controversy over the storage of cord blood, but if by some miracle it does work, we couldn't afford to be without it."

Reader Nine:
"I saved my daughter's cord and stem cells. This technology is the wave of the future. I think that it is comforting to know that if my daughter needed a bone marrow transfusion, that her own cells will be available to her."

Reader Ten:
"We banked our baby Kelly's blood because she has one older sister, eight (blood) aunts and uncles, and 19 first cousins. We thought with so many relatives, her blood may come in handy someday."

Why They Didn't

Reader One:
"My husband and I chose not to store our babies' cord blood (we have twins) for two reasons: 1) Our twins are identical -- if ever one needs something, the other can help; and 2) Banking cord blood is too expensive."

Reader Two:
"I decided not to bank my baby's umbilical cord because it was too expense, but I was seriously considering it."

Reader Three:
"I seriously considered and did quite a bit of research on banking, but when I asked my ob-gyn and she said it was a money-making scam unless we had a history of stem-cell disease in our immediate family, I decided against it. She was right on the money with all the other answers she gave us, so I believed her on this. In the end, do what you feel is best. A mom knows."

Reader Four:
"I think it's a really good idea to bank the umbilical cord blood -- if you can afford it. It's just not a reasonable cost for the average person. The cost is astronomical! I just couldn't do it."

Reader Five:
"It sounded like a great idea, but it was way too expensive for our meager budget to afford up front. Plus there are continued storing costs."

Reader Six:
"No, I did not bank the cord blood. I donated it to the San Diego Blood Bank. They use it to help save lots of kids every year. Hopefully if any of my children ever need it, someone else's donation will save them."

Reader Seven:
"We did not bank the cord blood. I asked my ob-gyn about some information that was in his waiting room. He said it was a scam, there wasn't much they could do with it yet, it was expensive, and just played on our emotions. I also asked someone from the Diabetes Association if they could use donations of cord blood for research (islet cell therapy research) but was told that the cells they needed were not in cord blood."

Reader Eight:
"We decided against keeping the cord blood for our son because our doctor explained that if our son had a disease, the cord blood would have the same disease. The maintenance expense was really too high for us at this time. We decided to try and donate the cord blood since everybody kept saying how valuable it was. Nobody knew where I could donate. The blood centers, hospital, and doctors were clueless. We thought maybe we'd be able to preserve a life. There needs to be more information regarding cord blood storage and/or donation."

Reader Nine:
"I did not because it was way out of my budget given the statistical risk of my child needing it. Sad, but those are the kind of decisions we have to make. Besides, I was put off by the cord bank people who seemed to really use scare tactics to sell their services. I tried to donate it but was told by our local bank that they weren't taking any more donations."

Reader Ten:
"I did not personally save my child's cord blood (could not afford the cost of storage). I was not going to have any more children after this one anyway. I did, however, donate the cord blood to a local children's hospital so that another child could benefit. I might have considered banking it personally if I could afford it because I know that there could always be a need for the stem cells in the future for my children."

Reader Eleven:
"We carefully considered this option. Although a little expensive, it would be a bargain if you ever needed it. All the information I could get from doctors, magazine articles, and the media was that it might prove beneficial to have the cord blood in the future if a close family member were to get leukemia. Since I saw that as a remote chance and there were no other know applications for the cord blood, we decided not to store it. If we were a family of mixed race, we might have decided differently."

Reader Twelve:
"I didn't store the blood because I didn't know anything about it. I would have, had I known. I wish my doctor would had something -- it could've really made a difference."

Reader Thirteen:
"My husband and I decided not to bank our baby's umbilical cord blood, but rather to let our newborn use it right away. We delayed the clamping of her umbilical cord so that she could receive her cord blood during the natural transfer that occurs after birth. We felt that doing anything else would deny our baby of her own very vital and personal blood supply, and start her off on the wrong foot."

Reader Fourteen:
"I decided not to store my baby's umbilical cord blood because after talking with my doctor, we felt some of the companies are just out to get money. I work in the biotech industry and went to school for pre-med and am pretty informed about medical treatments, etc. However, I was interested in donating my baby's cord blood for someone who needed it now instead of in the future. But as far as my doctor and I are aware, this option doesn't exist.

"I do believe in cord blood work. It is a great thing and I would encourage people to consider it. I just didn't want to this time around. If there were a bank for people to donate to, then people wouldn't have to always keep their own because there would be a supply (like regular blood donations)."

Reader Fifteen:
"Cord blood theory is great, but at this time it is unaffordable -- and we have a good annual income -- six digits!"

Reader Sixteen:
"We decided against it because not only is it expensive, but the chances it can be used by the child are near nothing, or that a sibling can use it are really slim -- and they don't tell you that. These are companies playing to parents' worst fears. It costs a few thousand dollars over the years to do this. We learned that there are places you can donate it to that can actually utilize it, at no cost to you."

Reader Seventeen:
"I decided to not bank my child's umbilical cord remains due to security reasons. Since this whole industry is new, I do not feel confident paying someone to 'store' my child's umbilical cord. If a desperate couple came looking for a certain gene or something that can be drawn from my child's umbilical cord, how do I know the storage facility will not sell it to the highest bidder? Also, what about cloning? How can I be sure that someone wouldn't swipe some of my child's DNA to do some secret scientific research?

"I do not trust society with this controversial matter just yet. I do not feel the proper laws have been put into place to protect those who do choose to store umbilical cord remains."

Reader Eighteen:
"We decided the money it would cost had such a statistically low chance of ever actually being used, that it would not be worth it. We decided not to let negative thinking ruin us. It worked fine because our baby was healthy, but I still wonder if something had happened, would we have regretted not banking cord blood?"

Reader Nineteen:
"We decided to donate it! Hopefully it can help someone. It seemed a shame to waste, and donation was free! I figured it was the right thing to do. Hopefully, someone can benefit."

Reader Twenty:
"I looked into saving my baby's umbilical cord at birth, but found it to be quite spendy. If it had been more affordable, I would have probably done it. Also, if our families had a bad medical history or if previous siblings were having problems, then I would have been more inclined to do it."

Reader Twenty-One:
"My husband and I did not even think about it at the time. A month or so after, we wondered why the hospital didn't mention it."

Questions to Ask a Cord Blood Banking Facility
What you need to find out before choosing a facility.

What you need to find out before choosing a facility.

Here are seven important questions to ask before deciding on a cord blood bank:

1. What are your yearly fees and maintenance costs? Find out how long these fees are guaranteed and when any possible increases might take place.

2. Are you accredited by the American Association of Blood Banks (AABB)? AABB accreditation means that the facility is found to be compliant with the guidelines established by AABB for the specialized processing of stem cells. General accreditation is not the same thing.

3. What method of collection do you use? Blood bag gravity collections tend to be easier for physicians, but provide greater risk: there can be a plug of tissue from the insertion that may prevent or limit a full collection. Syringe collections are generally more reliable and provide a larger volume of cord blood without the risk of tissue plugs.

4. How financially stable is your company? Without a profit, they won't be around for the long haul, and you might have to transfer your sample if the facility closes. While you may not always get a straight answer to this question, doing some outside research should reveal if they have a track record for profitability.

5. Do you bank for family use in addition to autologous use? The Food and Drug Administration requires that certain testing be performed prior to storing the blood in order for it to be available to other family members. If the bank you choose doesn't perform this testing, then your baby's stem cell sample is banked autologously -- which means that it can only be used for your baby and not any other family members.

6. Would I be able to switch facilities? Do I have the option of transferring my baby's blood to another facility if I choose? What happens to my sample if the facility goes out of business?

7. What percentage of transplant attempts have been successful? This is really the bottom line. The average is 80 percent. If their response is any lower than that, you might want to look elsewhere.

Your should know:

The information on this Web site is designed for educational purposes only. It is not intended to be a substitute for informed medical advice or care. You should not use this information to diagnose or treat any health problems or illnesses without consulting your pediatrician or family doctor. Please consult a doctor with any questions or concerns you might have regarding your or your child's condition.