by Cara Paiuk
On an initial visit to my OB/GYN’s office early in my pregnancy, I couldn’t help but notice the brochures about banking my baby’s cord blood. Once I started reading them, I got scared. All these diseases my child could get! Banking cord blood seemed like the only way to save my child’s life!
It seemed like a no-brainer until I decided to do a little research and discovered there is a lot of missing information and misinformation in those brochures and posters. Let me be clear that I am not a medical professional. I am just a mom who did extensive — but not exhaustive — research about cord blood banking. There is no substitute for doing the legwork yourself and coming to your own conclusions.
Misconception #1: The only option for banking cord blood is with a private cord blood bank.
False! Although there is no official national cord blood bank in the US as there is in other countries, there are many public cord banks who are all linked together through the National Marrow Donor Program (marrow.org). When you donate to a public cord blood bank, the cord blood sample is recorded in this national registry and becomes available to anyone nationwide who needs it. The chances that your child’s cord blood will save a life greatly increase when it is available to anyone who is a match.
If your hospital/midwife is not affiliated with a public cord blood bank, you can contact one of these four public cord blood banks who may be able to accept your donation.
Best of all, it’s free to donate whereas storing cord blood in a private bank costs $1,500-2,000 up front and $100-150 per year. That is why every major medical society has issued an opinion advocating public cord blood banking and discouraging private cord blood banking: The American Academy of Pediatrics, American Medical Association, The American College of Obstetricians and Gynecologists, The American Society for Blood and Marrow Transplantation, Royal College of Obstetricians and Gynaecologists, and The European Group on Ethics in Science and New Technologies.
Now you might think “I don’t want to do that — what if my child or family needs the cord blood?” Read on.
Misconception #2: Your best chance at treating a disease is with your own cord blood.
This is one of the biggest misconceptions out there. You cannot use your own cord blood to treat genetic diseases or leukemia. This is because the genetic disease is present in the cord blood and in the case of leukemia, doctors believe that the immune function of the cord blood is already compromised. Through the end of 2009 only 211 patients worldwide had been treated with their own cord blood even though there were over 750,000 cord blood units in private banks in the US alone.
Misconception #3: Private cord blood banking is like biological insurance for your family.
There is only a 25% chance that a sibling will match another sibling’s cord blood. This actually means that there is a greater chance someone from outside your family would have to provide the stem cells. In fact, 40% of the time the donor and patient don’t even live in the same country. Furthermore, while more painful and inconvenient than having cord blood on hand, if someone in the family is a match and does not share the disease, they might be able to provide a bone marrow donation. And lastly, if someone in your family already has a disease treatable by cord blood and you are about to have a baby, the NMDP will collect and store the cord blood for free until it is ready to be transplanted (they will charge a fee to your insurance company to release it).
Misconception #4: The cord blood sample you bank is ready to use when you need it.
Most private cord blood banks do not test the quality of samples upon arrival. They have a good reason for this — it increases their profits. Fully half of all collections are not viable, usually because they are too small or contaminated. If the private bank rejected all these samples they would lose half their revenue. Private banks can get away with this because there is such a low probability that you will ever need to use the cord blood. Most people never find out they are paying yearly storage fees for a sample that cannot be used for anything. On the other hand, a public cord blood bank tests the sample upon arrival. If it cannot be used to treat anyone they attempt to use it for research, meaning that you would still be helping to save lives.
Misconception #5: Private cord blood banking may be expensive, but at least I can itemize it on my tax return.
Private cord blood banking is not recognized by the IRS as a medical expense. The industry attempted to get the tax code revised but as of yet you cannot get a tax deduction on it.
After busting all these myths, my husband and I decided that public cord blood banking was the best choice for our baby, for our society, and for our wallet. It is free to add your cord blood and it is free to withdraw a match. Donating to a public cord blood bank is like donating blood. You have a chance of saving someone’s life and are contributing to a shared resource for our society. And, if for some reason the sample was not viable for treatment of a disease, it would not languish unused in a freezer for decades — it will be used for research to discover new treatments to save more lives. It was a win-win in our eyes.
Our hospital was not affiliated with a public cord blood bank, so we contacted the Carolinas Cord Blood Bank which will accept donations nationwide. There was plenty of paperwork and our medical team needed to register online in order to be certified to do the collection, yet for the most part it was pretty straightforward. Qualifying for donating cord blood was pretty easy, but you should be aware that it may not be advisable or possible to donate cord blood when:
- the baby is premature (you should let the cord pulsate for at least 30 seconds before cutting it)
- you have a multiple pregnancy
- he cord around the neck needs to be cut early to deliver the baby
- you have an emergency C-section
- you are taking certain medications
- you or the father have a transmissible infection(s).
If you do decide to bank your child’s cord blood with a private bank, please make use of this questionnaire or this list to ensure you select the best one for you.
Questions to ask your medical provider and potential cord blood bank:
- What is the percent chance that my child will need cord blood in their lifetime?
- What is the percent chance that my child’s cord blood will be harvested correctly and accepted into the cord blood bank?
- How long can the cord blood safely be stored?
- Does the usefulness of cord blood degrade over time?
- Does the probability that my child will need cord blood decrease over time?
- Which diseases can currently be treated by cord blood?
- Which diseases are expected to be treatable by cord blood in the future?
- How much can I expect to pay over the useful life of the cord blood?
- Will I receive a refund of all fees if the cord blood is ever damaged or lost?
- Will the cord blood be used for anything other than transplants, such as research?
- What rights over my child’s cord blood do I retain once it is in the cord blood bank? Can I choose to have it transferred to another cord blood bank or to a specific recipient?
- How will you maintain the privacy of my child’s genetic information?