Celebrating Cord Blood Awareness Month

Bring Hope to Patients and Families

July 16, 2024

This article originally appeared in AABB News, a benefit of AABB membership. Join AABB today to read the rest of this month’s issue.

 

Diagnosed with an incurable form of lymphoma at age 24, Diane Paradise had experienced four recurrences before she learned about the potential life-saving benefits of cord blood for patients with cancer. Since her initial diagnosis in 2001, the cancer had progressed from stage 1 to stage 4 with a metastasis in her bone marrow and returned for the fifth time in 2012.

After a year of chemotherapy treatments proved to be ineffective, Paradise needed a transplant. Although her oncologist initially recommended a haploidentical transplant, Paradise opted to enroll in a clinical trial comparing the effectiveness of two proven types of stem cell transplants in people with leukemia or lymphoma: one that uses partially matched bone marrow donated from a sibling and one that uses two unrelated cord blood donor units.

"I've never had a baby, so I had no idea that cord blood or tissue could be donated. Once the doctor explained that cord blood stem cells were pure and unexposed to diseases and en­vironmental toxins, I felt like cord blood gave me a promis­ing chance," Paradise said.

The doctor explained to Paradise that she would need two unrelated donors to increase the rate of cell engraftment as an adult. On Dec. 3, 2013, Paradise received her cord blood transplant. Twenty-four days later, a chimerism test revealed the stem cells from the dominant and bet­ter-matched donor had 100% grafted. After undergoing more than 40 scans, 70 blood transfusions, 30 radiation treatments and 15 types of chemotherapy drugs, her 19-year arduous cancer battle had finally ended.

Paradise recounted the immense gratitude and relief that flooded her when doctors shared the good news.

"I felt like I could breathe for the first time. The cancer had become so aggressive, and the treatments weren't working anymore. Cord blood was my last chance," she told AABB News. "When you leave your family and friends behind for treatment, there's uncertainty about return­ing. It's a hard experience. When the transplant worked and I real­ized I would be around to see my great nieces and nephews grow up, it felt surreal. Cord blood gave me hope for the future."

Improving Quality of Life

More than 50,000 umbilical cord blood transplants have been performed globally for a wide variety of malignant and non-malignant disorders since a 5-year-old boy with Fanconi anemia received the world's first cord blood transplant in 1988.

Once considered medical waste, cord blood has evolved to become an alternative source of hematopoietic stem cells (HSC) for allogeneic transplantation for children and adults without a related or unrelated bone marrow or stem cell donor. Cord blood is now FDA-approved as a treat­ment for more than 80 diseases, including cancers, blood disorders, genetic and metabolic diseases. Cord blood donations also address diversity by providing life-saving treatments to underserved racial/ethnic populations and patients of mixed heritage, as cord blood does not need to match as closely as donated bone marrow.

Ariane Navarro, MA, a two-time acute leukemia survivor, received a double-cord blood stem cell transplant in 2012. As an only child and a patient of color, Navarro had trouble finding a suitable match due to the shortage of bone marrow donors who match people of color (Hispanic or Latino patients have a 48% chance of finding a donor on the Be The Match Registry). The mother of two had never heard about cord blood as a viable treatment option until her sec­ond bout with cancer.

Navarro, who was first diagnosed in 2009 at age 26, stated she had few reservations about the proce­dure. Her prayer was to live a healthy life and watch her sons grow up.

"The doctors asked if l had trepidation using cord blood because it was a newer procedure. But when you're facing mortality, the potential benefits out­weigh the risks," she said. Despite wearing a mask and taking the necessary precautions to guard her compromised immune system, Navarro developed a fungal infection that required emergency surgery.

"Had the infection spread, I wouldn't have survived," Navarro said. "Your immune system is extremely delicate, and anything can wipe you out."

Navarro's incident is not uncommon, as cord blood transplant recipients are more susceptible to infec­tious complications, especially in the first 30 days, due to delayed engraftment. A study that observed 57 patients who underwent umbilical cord blood transplant (UCBT) between 2006 and 2015 reported a total of 179 infectious episodes in 55 patients, 73 (41%) within 30 days post-UCBT. Viruses caused 47% of infections. On the upside, research shows that graft-versus-host disease occurs less frequently after a cord blood stem cell transplant compared with other transplant procedures.

"Getting infections is the risk of using cord blood," Navarro pointed out. "But after years of research, doc­tors are starting to see that patients who underwent a cord blood transplant may have a better quality of life compared with those who received a bone marrow transplant. Personally, at this moment, I feel the best I've ever felt in my life."

Paradise also experienced a fungal infection nearly two months after her transplant. She recovered quickly without serious complications. "People have lost their grafts because of fungal pneumonia. Grate­ fully that didn't happen, and I went home on day 75," Paradise said. "I felt better than I had in years."

Raising Awareness

Despite the potential life-saving properties, the use of cord blood continues to decline as a stem cell source due to the rise in haploidentical donor trans­plants. There is also a lack of education amongst expecting and new parents. To raise awareness about the importance of saving and storing cord blood, the United States Department of Health and Human Ser­vices' National Health Information Center designated July as National Cord Blood Awareness Month.

Marcie R. Finney, MS, MBA, executive director, Cleveland Cord Blood Center, spoke to AABB News about her center's dedication to advancing research and increasing public awareness. Recent break­ throughs in regenerative medicine highlight the potential of cord blood in treating conditions such as cerebral palsy, autism and even certain types of diabetes, showcasing its transformative impact on modern medicine, she pointed out.

"Cord Blood Awareness Month serves as a powerful reminder of the life-saving potential that cord blood holds and underscores the necessity of raising awareness about this in­valuable resource," Finney said. "The latest research continues to uncover new therapeutic applications, bringing hope to countless patients and their families. Every cord blood unit has the po­tential to save a life or contribute to groundbreaking medical research."

Finney noted that many expectant and new parents are still unaware of the option to bank their child's cord blood, which can be a vital resource for their family's future health.

"Raising awareness about cord blood banking is crucial. By educat­ing the public, health care profes­sionals and policymakers, we can ensure more families have access to this potentially life-saving option," Finney added.

To date, 31 states in the U.S. have adopted a law or have a piece of pending legislation that mandates or encourages physicians to educate expecting parents about cord blood banking. Paradise noted that many doctors remain unaware of this mandate.

"I've met women in their third trimester who have never been told about cord blood banking," Paradise said. "We need physicians who are willing to be cham­pions of cord blood banking. It's essential that patients receive not only educational materials but also that phy­sicians dedicate time to discuss the information with them and address their questions. AABB and cord blood companies and organizations can only do so much."

Paradise shared that her experience taught her expectant niece about the value of cord blood. To that end, her niece privately banked her newborn's cord blood because of their family's history of blood cancer. "I believe that it's important to safeguard your family's future," she said. "A lot of people think that private banking is for the wealthy, and that is no longer true; however, expect­ant parents can't make an informed decision without knowledge. People need to know they have options, and they are affordable."

Coming Full Circle

Both Navarro and Paradise described their careers in cord blood banking as full circle moments and shared their passion to make a difference in the field.

In her role as a cord blood bank collector at The University of Texas M.D. Anderson Cancer Center, Navarro educates and recruits potential donor mothers to the public cord blood donation program and facilitates collection of the cord blood, ensuring timely transport of the blood products to the processing laboratory. She is most passionate about empowering underserved communities and noted that most of the patient population she serves in downtown Houston comprises undocumented and uninsured expectant mothers. Navarro teaches them about cord blood and storage options, only sharing her personal story if they provide informed consent.

“We need more cord blood donations from Black, Asian and mixed-race families, but it’s not just about getting more collections and consents. As blood collectors, we cannot judge people for not wanting to donate, especially African American families that opt out because of medical mistrust," Navarro said. "I'm not just advocating for cord blood, but also for women to understand that they have a choice. It's important for them to know they are in charge of their body," she said.

As a cord blood ambassador for Cryo-Cell International, Paradise educates expectant parents and physicians on cord blood banking and donation in a variety of ways. She wants families to understand what cord blood banking is and why it is important for their family.

“Years of battling cancer and ultimately being cured by cord blood have led me to my true purpose,” Paradise stated. “Helping parents understand the life-saving potential of cord blood is profoundly rewarding. I feel incredibly fortunate to work for Cryo-Cell, where all those years weren’t in vain; they culminated in this meaningful purpose.”


Forever Changed

Navarro said cord blood has changed her life personally and professionally. Her dual role as a cord blood transplant recipient and cord blood bank collector also provides her with a platform to advocate for greater access to survivorship care and mental health services within the young adult cancer survivor community.

"It's been a great journey and a rewarding career," Navarro said. "It's amazing to know that women can produce life and then also save a life through their ba­by's umbilical cord. From the collection of the blood to the storage to the transplantation, the entire pro­cess is a miracle. I'm here because someone delivered a baby, and someone collected cord blood, and now I get to do the same. I've come to appreciate women's bodies and childbirth and just living again."

Paradise shares a similar sense of gratitude. Every year on July 21, she celebrates her donor's birthday (collection date on the donor bag) by going live on Facebook, lighting a cupcake and asking those watching to send birthday wishes to her.

“Although I’ll never get to meet her, we’re forever connected. She’s my hero, and I’m eternally grateful,” Paradise told AABB News. “I was cured by cord blood. It’s extraordinary that a woman can give birth once and give life twice.”