Why Storing Cord Blood was Not the Right Choice for Our Family

After careful review of the research, we decided that donating or storing cord blood was not in the best interest of our family.  Few people publish the reasons they choose not to bank their baby's cord blood.   I have outlined the basis for our decision below so that others may see this issue from a different perspective. Although this option may seem like the ultimate altruistic act, giving your child's cord blood so that another may have life, we could not in good conscious select this option for both moral and ethical reasons.

Moral/Ethical Implications

The  first reason is that if the sample size is inadequate for transplant, it will either be disposed of or sold for medical research.  In fact, about 75% of donated cord blood samples will meet this fate.  While this may not be an obstacle to some, for us, it was a deal-breaker.  Not that it may be disposed of, but that it may be sold for research.

Once the sample is donated, your legal rights are terminated, nor can you have a voice in how it is used.  As we are morally and ethically opposed to the use of our children's cord blood for the purposes of cloning, developing biological weapons, and other such research endeavors, we could not select donation as a viable option.  Since we would have no say to what purpose the cord blood stem cells were put, we could not allow the possibility for it to be used in what to us are unconcinable acts.

Why We Didn't Choose Private Cord Blood Banking

We also could not in good faith choose the option of storing cord blood privately either.  The reasons here are a bit more complex.

False Advertising

The chief sin of all private cord blood banks is false advertising.  Any company that touts their service as "biological insurance", especially if they use the examples of treating future cancers, is seriously misleading the public.  The primary reason this is false advertising is that, after storing cord blood, it could actually be used to treat a disease in the same child from which it was harvested is not guaranteed.  This is because any genetic diseases or disorders the child later develops will also be present in the child's cord blood.  It may in turn be used to treat a sibling, but not the original child.     This fact is rarely specified to parents who are then given false hope once a diagnosis is determined.  Their hopes are then stripped away as they find that the umbilical cord blood will be useless in helping save their child and that all the years of "health insurance" were nothing but an empty promise.

Often Incompatible with Evidence-Based Practice

The current buzz about cord blood donation and storing cord blood privately has led to a perception that this cord blood is not needed by the infant at birth and has become a contributing factor to the non-evidence based practice of early cord clamping. The research evidence supports that the newborn umbilical cord should not be clamped nor cut until pulsation has ceased, which can take between 5-20 minutes or more, depending upon whether the birth was natural or medicated.   While in most instances enough cord blood can be collected after the cord has stopped pulsating, the vast majority of physicians don't adhere to this practice, telling parents that the cord must be early clamped to make donation possible. In other instances, cord blood banking companies' literature will specifically state that the collection must occur before the cord stops pulsating, leading in turn to early cord clamping.

The practice of early cord blood clamping results in documented harm to the infant, including increasing risks of complications shortly after birth, including hemorrhage and anemia.  In truth, early cord clamping can rob the infant of half its total blood volume, which can take up to 6 months to regenerate. In a newborn, a bleed of only 1 ounce will cause a critical hemorrhage. A bleed of 2.3 ounces will kill the baby. As a newborn's total blood volume is about 10 ounces, this leaves little room for error.  Please reference this article detailing the benefits of delayed cord clamping and restricted umbilical cord problems.

The American Academy of Pediatrics stated "if 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" and it supports the practice of delayed cord clamping.

Even the American College of Obstetricians and Gynecologists, which is usually woefully out of line with the research in some of its recommendations, also supports the practice of delayed cord clamping.

Unfortunately, this is an area of obstetric care where research and practice don't meet.  Despite the overwhelming research and public policy support of delayed cord clamping, many physicians do not respect this recommendation.  Many believe that the cord must be early clamped for storing cord blood.

Since we were not able to locate a provider in our area who was well-versed or receptive to this practice when storing cord blood, it was also a deal-breaker for us.  We firmly believe that our efforts should focus on giving our children the best possible start in life by allowing them to have an optimal transfusion of cord blood at birth rather than sacrificing their immediate health for potential future complications of which we have no family history and/or predisposition, and for which other viable treatments options may be pursued.

The Research on Storing Cord Blood Privately

Overwhelmingly, there is little support for private cord blood banking.  In fact, it is illegal in Italy and France.   In addition, no major medical organization even endorses the practice of private cord blood banking.

The RCOG or Royal College of Obstetricians and Gynaecologists in the UK released a 2006 position which stated, "There is still insufficient evidence to recommend directed commercial cord blood collection and stem-cell storage in low-risk families."

The American Academy of Pediatrics 2007 statement was that  "private storage of cord blood as 'biological insurance' is unwise" unless there is a family member with a current or potential need to undergo a stem cell transplantation.

The American Society for Blood and Marrow Transplantation (ASBMT) also supports the position that cord blood donation may be beneficial as well as private banking if there is a family history of disease or if many risk factors are present.

Ownership After Storing Cord Blood Privately

After paying hefty fees for storing cord blood privately, it may seem a logical conclusion that the family then owns the exclusive legal rights to the banked cord blood.  But this, in fact, may not be the case.

In 2007, the largest private cord blood banking facilities still do not explicitly state in their contracts that the umbilical cord blood belongs to the donor and/or family, including all the legal rights you would naturally expect with this type of arrangement.  This  "loophole"  opens the door to open future unapproved uses which may include, but are not limited to: cloning, research and partial sale.

In addition, the standard contracts may also omit vital information on the donor's right to end their relationship with that company, especially with regard to the transfer, right to request destruction of the stored cord blood as well as to verify destruction.  This also opens the door to other unapproved avenues of use in that if destruction or disposal is not defined, then release of the sample for medical research may be defined as "disposal", though not in an ethical manner.

Utlimately, it is a personal decision that you as a family must make on whether storing cord blood, either publically or privately, is the right choice for you.  I hope that our reasoning sheds some light on the darker side of the cord blood banking industry so that you can make an informed decision as well.

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Page Last Modified by Catherine Beier, MS, CBE

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