Toddler helped by stem cells (Denver Post, 2009)

By Amy Price PhD

Chloe Levine  is  another one of the children in the Duke University study who has shown pronounced improvement of cerebral palsy after treatment with her own umbilical cord. There have been multiple questions from parents on cord banking and the advantages of banking umbilical cords. This is a follow up on the Dallas Hextell story

It should be noted that  if you choose to private  bank there may be issues with transporting the cord cells across state lines or out of  the country both with safe transport for the cells and with legal issues. There is also a great deal of expertise needed to bring the cells back from a frozen state to where they will be of use to grow out healthy stem cells. It may be best to check  carefully in these areas to avoid complications later on down the road if the cells are needed and you have relocated.

For those that have questions on using donated umbilical cords I have found stem cell companies that claim postitive results but I have not been able to locate peer reviewed research on children or large animals for this area. This does not mean they do not exist as the stem cell research arena grows daily so if anyone has cerebral palsy stem cell therapy research using other means  I would be happy to add this

Dr Frances Verter of Parent’s Guide to Cord Blood Foundation graciously helped us  out with some answers. This site has excellent in depth information.

Dr. Amy Price wrote:

It is not clear if children whose cord blood is stored in a public bank will have access to their own cord blood should the need arise. Could you please elaborate on this? Obviously unless the disease is genetic it would make sense to use own donor supplied cells….There is a mail in component but this does not make it clear how a parent would take these steps ….please advise, we get a lot of parents asking about this

Dear Amy,

The “consent” form signed by the mother when they donate to a
public bank makes it very clear that  they are giving up all
ownership or rights to the cells.

Will the parents be able to donate?
Only IF
1) IF they are delivering the baby at a hospital which collects
for a public bank
2) IF they deliver during whatever hours the public bank operates
(sometimes only day shift)
3) IF the mother passes the maternal history screening
4) IF they register early enough

Will they get them back should a need arise?
Yes, but only IF:
1) IF the cells were not discarded.  Typically 60% of donations
to public banks are discarded, usually because of low volume, other
reasons could be infectious disease testing, etc.
2) IF the cells have not been released to someone else.

A lot of parents have the misguided idea that donation is a cheap
way to preserve for themselves.  They should not think in those terms.
Donations is an altruistic act.

There is only one bank which accepts mail-in donations,
Cryobanks Intl in Florida.  I have heard that their rejection
rate is very high, because on top of sample size there is also
shipping time issues.  Here is their enrollment form:
http://www.cryo-intl.com/enroll/donating/

I hope this helps,
Fran Verter

Dallas Hextell Foundation 2009 for video click Picture

Brain injury, Spinal Cord Damage and Cerebral Palsy are demonstrating success with patients own stem cells. Research for AIDS, MS and Sickle cell using donor cells are increasing. Public and Private cell banking facilities demand a choice, share with others or keep your own for a time of need?

Mary Carmichael of Newsweek did a compelling interview with a couple whose young son was diagnosed with cerebral palsy and the doctor who conducted the experimental treatment. She outlines the medicine for profit aspect of stemcell storage. The pathos of the doctors comments that he may have gotten better anyway and the soft sell for public banking yet raise interesting points. My children are  adults but even in the early years their cord blood was collected and donated for research.

 The Hextell’s featured in the video above tried to conceive for three years and finally with invitro fertilization succeeded. Little Dallas was born wanted and celebrated into a medicine savvy family who banked his own cord blood cells. Dallas was diagnosed with cerebral palsy and became one of the privileged children chosen for research at Duke university. If my children had Cerebral Palsy they could not have enjoyed this benefit because the cells were given for others and presonal access was unavailable.  I would propose a two tier system where cells could be banked for public use but accessed in case of physical need by the donor providing cells were still available.

This is the way we prepared for my husbands bilateral hip replacement. We arranged to have blood taken in advance and then agreed if it was not needed it would go into the public bank. It turns out he needed his blood and then some which made me feel the power of the donations  of all the blood and platelets we have supplied over the years as a family. Some conditions require more cells than the cord blood can grow and others have genetic variables that would make using someone else’s cord cells  more viable.

I am blogging on this because I recieve requests from parents asking if they should take their children to China in hope of a cure.  Research in the USA and from animals studies show about a 30% improvement rate. Opponents and researchers agree that only 1-2% of the cells get to the brain when delivered intravenously, however it may be other components in the cell that are acting to faciliate repair and recovery.  I will blog an answer from my perspective in a future blog

For this post here are some links on cord banking

Private or Public Banking?

Parent’s Giude to Cord Banking

Be The Match