Private Umbilical Cord Blood Banking: Smart Parenting or Waste of Money?

Promise of future cures draws parents, but are they wasting money?

ByABC News
May 4, 2010, 10:20 AM

May 5, 2010— -- The choices expectant parents make today go beyond whether to find out the gender of their unborn baby or whether he or she may potentially have a genetic disorder. Today, many parents must decide whether to store their baby's umbilical cord blood.

Some are calling it a kind of biological insurance for your child's future. Cord blood provides a rich source of stem cells, primitive cells that have been used for cancer treatment for more than 20 years. Cord blood is marketed for two uses -- as a treatment for diseases such as leukemia and sickle cell disease, and as a potential source of cells for regenerative medicine -- a cutting-edge field of medicine studying how to repair tissues damaged by everything from heart disease to cerebral palsy.

Many banking firms tout an impressive list of 70 to 80 diseases in their marketing material that are purportedly treatable by cord blood. The list of diseases advertised as possibly treatable includes osteopetrosis -- a rare condition where the body produces excess bone, which causes blindness and can be fatal if left untreated. But most diseases on such lists are genetic and can't be treated with a child's own cord blood.

Cord blood can be banked two ways -- in public banks for use by anyone in need whose blood type is a match, and in private banks where it is only available to the family of the child who donated.

There are currently 17 public banks in the United States that serve not the U.S., but also send cord blood to other countries. The public banks tend to collect from nearby hospitals to ensure high quality. Most do not hold cord blood for the individual who donated it; instead they provide the blood to anyone who matches within the donation system. The public system is primarily designed to provide cord blood for treatment, not regenerative medicine which requires a patients' own stem cells.

While a majority of parents will choose to do nothing and the cells will be discarded after birth as medical waste, some parents will work to decipher the debate between private cord blood firms competing to get into the lucrative industry and public banks attempting to boost donations, especially by ethnic minorities, to build a national cord blood system.

Public banks are free, but private storage of a newborn's umbilical cord blood can range from $2,000 to $3,000 up front, plus yearly storage fees of $85 to $125. The choice to privately bank your child's cord blood goes beyond the financial commitment, however.

Many parents-to-be ponder what umbilical cord stem cells can be used for right now, and what is being looked at for the future. Understanding the answers is critical in making an informed decision.

Tracey Dones of Hicksville, N.Y., saw an advertisement for a cord blood banking firm in a magazine. After reading an accompanying article, she was sold on the idea and paid a private company to bank her son Anthony's cord blood.

"God forbid if my child ever got sick -- his or her own stem cells are its own perfect match -- how could we not save that?" said Dones. "I thought I was getting something that would've saved his life, if need be."

Four months after Anthony Dones was born, he was diagnosed with osteopetrosis.

"Finding out the diagnosis was devastating enough. And then when they mentioned the stem cells, I said, 'I bet if you had cord blood we could use that. And immediately, they said, 'absolutely not,'" said Dones.

Since osteopetrosis is a genetic disorder, Anthony's cord blood stem cells carry the same disease, thus his own private cord blood banking was useless to treat Anthony. While stems cells are effective in treating genetic disorders like osteopetrosis, according to Dones, they were not told that using their baby's own cord blood would not work if he had a genetic disease.

"I was devastated. Anthony's father and I were both like, so why did we save this?" asked Dones.