Cord Blood Banking: One Family's Experience

shelly and peyton


by Scott Westcott/AP Images for Cord Blood Registry

The way Shelly Connelly views it, considering whether to bank umbilical cord blood "is one of the most critical choices expectant parents face."

LEARN MORE: Cord Blood Banking Basics

"You don't want to think of ever having to use it, but there's always that 'what if,'" explains Connelly. "And then we had a what if …”

Connelly's daughter, Peyton, suffered a massive stroke soon after her first birthday in February 2009. The stroke occurred shortly after a successful surgery to remove a benign brain tumor. Peyton could barely lift her head and lost use of the right side of her body. She also lost her verbal skills. Peyton was soon immersed in intense physical and speech therapies, but progress was slow.

"The only thing the doctors could tell us was that she would regain some function," says Shelly Connelly, 33. "I wasn't satisfied by that. I wanted to know she would be walking, talking, and would grow into an independent adult. Then a light bulb went off: We banked her cord blood. We have options."

Giant Leaps

Shelly and her husband, Travis, 32, had banked Peyton's umbilical cord blood at birth through Cord Blood Registry® (CBR®), the world's largest newborn stem cell company. After Peyton's stroke, the Connelly’s researched their options and soon found themselves in North Carolina at the Duke Stem Cell and Regenerative Medicine Program. At Duke University, Peyton quietly watched a movie as her own cord blood stem cells flowed through an IV into her bloodstream. About 20 percent of the banked cord blood was preserved for potential future treatments.

Peyton was infused with her own cord blood stem cells as part of an experimental treatment. The intravenous administration of autologous umbilical cord blood is an unproven treatment for pediatric stroke. Peyton's results may not be typical of a patient with a similar condition who receives a cord blood infusion and may be caused in whole or in part by other factors such as treatment in physical or occupational therapy.

Today, five years after the stroke, Peyton's progress continues to outpace expectations. She is on track with her fellow kindergartners, both in the classroom and on the playground. Shelly Connelly expects her daughter will live a full and normal life.

Cord Blood Uses

Over the last two decades, stem cells derived from cord blood have been used in more than 30,000 transplants worldwide in the treatment of more than 80 diseases and disorders in adults and children. In addition to its proven uses, cord blood is being used experimentally and being researched for its potential to improve symptoms of conditions that currently have no cure. The Connellys are among an increasing number of families that have participated in experimental uses of cord blood.

The overwhelming majority of families are not storing cord blood for family use or donating to a public bank, due to a lack of awareness regarding the medical potential of newborn stem cells. Most cord blood is discarded as medical waste. Through active patient education and counseling to promote informed choice, Cord Blood Registry strives to reach an increasing number of families that may benefit from cord blood banking.

Making an Informed Decision

In 2005, the Institute of Medicine (IOM) issued a report to Congress on cord blood banking. The report contained clear recommendations that health care professionals should provide all expectant parents with fair and balanced education on cord blood preservation before labor and delivery, thereby enabling families to make an informed choice regarding their options, which are:

  1. Preserve the cord blood for future family use
  2. Donate the cord blood for public use or research
  3. Dispose of the cord blood

The IOM's recommendations prompted federal legislation and statutes in more than 20 states that support informed choice.

In February 2014, Cord Blood Registry and The Institute for Transfusion Medicine SM (ITxM SM)  announced the launch of a multi-year initiative to provide education and guidance to expectant parents regarding options for cord blood banking and donation. The program helps health care professionals educate families on the differences between the private and public banking systems and provide balanced information on current therapies and future clinical indications for treatments using cord blood stem cells.

Future Possibilities

Presently, more than 200 clinical trials are exploring cord blood stem cells to advance treatment options in transplant medicine and emerging applications in regenerative medicine.

An FDA-regulated study being conducted at Florida Hospital for Children in Orlando is investigating the use of a child's stem cells from their own stored umbilical cord blood as a treatment for acquired hearing loss. The year-long study will follow 10 children, ages 6 weeks to 18 months, who have sustained acquired hearing loss.

"This study is exciting because it might offer a nonsurgical option for some children with profound hearing loss," says Linda Baumgartner, an auditory-verbal therapist who is a principal investigator on the research being conducted at Florida Hospital for Children. "More importantly, this is the first treatment with the potential to restore normal hearing."

The trial investigators are exploring if the child's own stored stem cells can improve inner ear function, audition, and language development. Although it is too early to discuss results, researchers say they are encouraged by the prospects of potentially developing a new, nonsurgical treatment to hearing loss.

"Some parents may presume that stem cell therapies are in the preliminary research stages and therefore their family members are unlikely to benefit during their lifetime; however, a growing body of research suggests that harnessing the body's own cells for treatment is more of a 'when' than a 'what if’," notes Heather Brown, Vice President of Scientific & Medical Affairs at Cord Blood Registry. "Newborn stem cells hold promise to treat damaged and diseased cells and tissues beyond hematological disorders," Brown said. In recent years, cord blood derived cells are being investigated for regenerative medicine applications in FDA-regulated clinical studies for conditions that currently have no cure, Brown added.

LEARN MORE: Cord Blood Banking Plans and Pricing

"People are so overwhelmed with information when they are expecting and have lots of choices to make," Shelly Connelly says. "I urge parents not to ignore this important decision by assuming your newborn will be perfectly healthy. Our health situation can change—sometimes unexpectedly.”

This resource was developed with the support of Cord Blood Registry® (CBR®). CBR is committed to ensuring that all expectant parents are provided with a balanced perspective on all cord blood options so that they can make an informed decision to save, donate, or discard their newborn’s stem cells. Visit cordbankingbasics.com to learn more.

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