How cord blood “changed my daughter’s life”: Phallon’s Story
Lizanne admits that when it came to cord blood banking, she was a skeptic with little knowledge of the rationale behind storing her baby’s stem cells.
While pregnant with her second child, Lizanne’s partner researched the benefits cord blood banking, and the couple decided that the storing process – an insurance policy of sorts – was important to their family. As a result, the couple made arrangements to collect and store their baby’s umbilical cord blood with Insception Lifebank.
Months later, the couple’s daughter, Phallon, was born six weeks early and, shortly before her first birthday, was diagnosed with cerebral palsy.
“She was such a good baby,” says Lizanne, “but I couldn’t shake the feeling that something wasn’t right. She was so quiet and never really played. It was almost like she wasn’t fully there or connected to us.”
Many tests and doctor visits later, Lizanne remembers listening to the prognosis of cerebral palsy. “At that point, no one could be sure of the quality of life Phallon may have,” she shared. The couple sprang into action and began occupational and physical therapy for Phallon as soon as they could. “Did I go above and beyond?” asks Lizanne, “Sure I did, but this was for my child.”
Then, one day while watching TV, Lizanne caught sight of a commercial for stem cell therapy for leukemia. “It seemed like such a random thing, but there in the background information it said stem cells could also potentially be used to treat cerebral palsy.”
Lizanne went online to find out more and discovered a clinical trial being conducted at Duke University in North Carolina investigating the impact of cord blood in cerebral palsy. Lizanne applied to enter the study, and Phallon was the first Canadian to participate in the trial.
The trial was a double-blinded, cross over study, meaning Phallon received two infusions, one being placebo, and one of her own cord blood.
Lizanne shared that, “after the treatment at Duke, Phallon began making significant and accelerated progress and a change was clearly noticeable.” She said, “I picked her up and could see the connection in her eyes; she smiled and it was like looking into her soul. I had never experienced that with Phallon before. Since then, her development has skyrocketed.” The University has since published data that suggests umbilical cord blood improves brain connectivity and motor function in some children with CP1.
Today, Phallon loves to dance, skate and ski. Her new adaptive bike gives her the freedom to be outside even more. She still has challenges with cognitive delays, and issues related to balance, but Lizanne says her determination is “fierce”.
Lizanne believes the cord blood therapy was critical to her daughter’s progress. “Even the best physical therapy, can’t offer you that inside connection. Something changed after our time at Duke, and she is now achieving well beyond anyone’s expectations.”
While Lizanne cautions that everyone’s diagnosis and situation is different, she encourages expectant parents to explore the option of cord blood banking.
“Everyone has to make their own decisions and do what’s best for them. Cord blood banking, though, has changed Phallon’s life. I wouldn’t change a thing.”
Cord blood is not currently an approved therapy for cerebral palsy in Canada or the USA. Clinical trials are ongoing to determine whether cord blood is effective in the treatment of cerebral palsy. More recently, Duke University Medical Centre has been approved by the FDA for an “expanded access program” investigating the use of cord blood for neurological disorders including cerebral palsy. For more information on the program, visit https://clinicaltrials.gov/ct2/show/NCT03327467.
In 2017, Insception Lifebank established its Cerebral Palsy (CP) Sibling Cord Blood Collection Program. The program offers free cord blood collection and storage for newborn babies who have a sibling with cerebral palsy. The program aims to ensure children with cerebral palsy and their families have potential access to local and international clinical trials.
Do you have a child with cerebral palsy? Are you expecting another child? You may be eligible to have your child’s cord blood stored at no cost. Eligibility criteria apply. Request your information kit here.