Urgent Plea for Cord Blood

[Anonymous]

I know with CBR they freeze the blood in multiple vials so you can take some and still have some saved. Once it is defrosted it cannot be refropzen. Has anyone had their child tested? Where did you go?

[Anonymous]

Inova Fairfax will support donation of cord blood. That is what we did with DD. We were really happy to be able to potentially help someone else out. There is very little research about the potential for someone to be able to use their blood in the future - unclear on how long cord blood will "last", etc. If you can, it is nice to be able to donate!

[Anonymous]

Thought I would post an update on this issue. This email was is from my representative at CBR (I think they have handled this issue beautifully). See the interesting questions and answers at the bottom.


Dear Valued CBR client:


I am writing to you concerning an e-mail you may have received this past Sunday, April 27th from a family in New York who is seeking a cord blood donor for their daughter, Eve.


We have been in direct communication with Eve’s family and they have asked us to express to you their sincere appreciation for the overwhelming gestures of generosity and support from CBR clients. However, they also want you to know that they do not need CBR clients to request that their stored samples be tested to see if they might be a match for Eve. The family is working directly with Eve’s physicians to pursue the necessary treatment for her. They are also asking everyone to help stop the further distribution of the original e-mail. Please feel free to share this correspondence from me with anyone who you think has seen the e-mail.


The e-mail about Eve has raised several questions that we have addressed below. If you have any questions about this situation that we haven’t addressed, you can send an e-mail to [e-mail]. We will work diligently to address the questions we receive.


Thank you for your help and concern for Eve .


Sincerest Regards,

Dondi Pulse-Earle

CBR Transplant Coordinator





Important Questions Regarding Family Banking



1) I banked my baby’s cord blood with CBR. Who is eligible to use the collection if it’s needed?



CBR, like all family banks, is strictly regulated by state and federal agencies, including the FDA. There are significant differences in the way that publicly donated cord blood and family banked cord blood are regulated. Under FDA regulations, a cord blood that is collected and then stored specifically for a family bank can only be used by the family who stored it. Specifically, it can be used in medical treatment for the child it came from or by a first or second degree relative of that child (mom, dad, sibling, grandparents, aunts, uncles and in some cases first cousins). The FDA does not allow it to later be donated for use by a non-relative. In order to be eligible for broad public use, a collection must be donated to a public bank at birth.





2) Can I request that a sample stored at CBR be tested to determine if it is a match for someone unrelated who might need it?



No. Per FDA regulations, a sample stored at CBR can only be used by the family who stored it. Once a collection is placed in storage, it is not pulled out for testing until it is needed by the donor’s family.



3) What is the process I should follow if my child or someone else in the family needs the cord blood we stored with CBR?



If a transplant physician determines that your child or family member may need a cord blood transplant, you should call the CBR Transplant Line at 888-536-8517. The CBR transplant coordinator will assist the family and the transplant physician with this process. HLA can only be ordered by that physician and the physician must designate the lab to which it is sent (typically the same lab as the recipient). Every step is coordinated with the family and the transplant physician to ensure timeliness, accuracy and completeness. Once the typing and other testing has been completed, the transplant coordinator will make arrangements with the transplant physician for release of the unit.



4) How can I help someone who may need a stem cell transplant?



If you know someone who needs a stem cell transplant who can’t find a cord blood or bone marrow match from a public bank or within their own family, you can offer to be typed for a potential bone marrow donor. To see if you’re eligible, you can contact the National Marrow Donor Program (NMDP). Their web site is http://www.marrow.org/.





Dondi L. Pulse-Earle

Quality Assurance/Transplant Coordinator

Cord Blood Registry