"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.
The advertisements for cord blood banking appear in magazines, online, in doctor's offices, and on Facebook. Oftentimes an expression of interest by expectant parents prompts an invitation by private banking companies to a fancy informational dinner.
ABC News sent a producer with a hidden camera to one of these informational dinners to investigate what expectant parents are being told.
"Why is this so important? It's important because with the amount of diseases that we can treat today, by the time you reach the age of 70 you'll have approximately the chance of receiving a stem cell transplant – one in 200, one in 217," said Dr. Albert Sassoon, obstetrician gynecologist in New York, at an informational dinner for expecting parents.
Dr. Machi Scaradavou, pediatric oncologist at Memorial Sloan Kettering hospital in New York and medical director of the New York blood bank, told ABC News that the chance that anyone will benefit by their own cord blood is much lower than that.
"The chance of somebody needing their own cord blood is extremely, extremely low," said Scaradavou.
In many cases, however, a sibling's cord blood could be used, said Sassoon.
"The survival rate is higher when using matches from private banks because of the increased chance of finding a related match," said Sassoon in a written statement to ABC News.
Critics claim that private cord blood banks exploit expectant parents' worries using emotional advertising and confusing statistics to convince them to buy expensive banking they may never need or be able to use.
Because a child's own cord blood does not work to treat many disorders, private companies emphasize regenerative treatments for diseases such as cerebral palsy or stroke, where a child may need his or her own blood. While some industry leaders predict that in a few years regenerative medicine will be able to heal damaged tissues in the body, research suggests it is too early to bank on the technique.
According to Scaradavou, one of the best reasons to opt for private banking is if there is another child in the family who has a blood disorder like leukemia or sickle cell disease that will need his or her sibling's cord blood immediately.
"If there is somebody in the family that already has a disease, that is a good indication to do family banking to save a sibling's cord blood for that patient," said Scaradavou. "You don't keep it for any reason in the future; you keep it for that existing patient that has a disease that can be cured by transplant."