When Nosheen’s first child, Armaan, was born, there were complications during birth causing severe hypoxic ischemic encephalopathy due to the lack of oxygen. The prognosis for Armaan was dire. “We didn’t expect to be able to take him home,” says Nosheen. “We were told that his care was palliative and that eventually his brain may start shutting down.”
Armaan managed to survive the night in hospital and the weeks to come. In due course, he was able to go home with his family and was subsequently diagnosed with cerebral palsy (CP). CP is often caused by oxygen deprivation during delivery. “The first year of Armaan’s life was spent between therapies and nurses and neurological appointments,” Nosheen recalled. Today, Armaan is living with spastic quadriplegia cerebral palsy. While Armaan is surrounded by his loving family, he is tasked with the daily challenges associated with his diagnosis, including limited control and use of his four limbs. Armaan’s mobility is limited, and between regular appointments for physical and speech therapy, he is reliant on Nosheen for all of his care.
After Armaan’s birth, Nosheen and her husband Abdul began researching potential avenues of treatments for their son. In their research, they learned about umbilical cord blood storage. Umbilical cord blood is rich in stem cells that can only be collected at the time of a child’s birth. These stem cells can be stored and accessed in the future for potential treatment of a variety of different medical treatments, such as solid tumors, blood cancers, and genetic diseases. New therapies are also being researched for conditions such as cerebral palsy and autism.
While pregnant with their second child, Anaya, Nosheen and Abdul were encouraged by their obstetrician to store their child’s cord blood, which they did, as it may be of potential use for Armaan. The decision was influenced by their research and emerging clinical trial data indicating umbilical cord blood may help improve brain connectivity and motor function in some children with CP.[i]
Recently, Duke University Medical Centre in the USA was approved by the FDA for an Expanded Access Program investigating the use of cord blood for neurological disorders including cerebral palsy. Armaan’s family has applied to Duke and is going through the process to determine if he qualifies for the program.
So far, the family has tested Anaya’s cord blood and the siblings are a match, meaning the stored cord blood may be used in the treatment of Armaan’s condition, and that he could be considered as a candidate for the Expanded Access Program at Duke. “I don’t expect it to be a miracle cure,” says Nosheen, “but if it means even a 10 percent improvement in my son’s condition, it would have a tremendous impact on his quality of life.”
While the family continues the application process with the program coordinators at Duke, Nosheen shared, “We are anxious about what happens now, but we remain hopeful that we will be able to successfully use this cord blood to help our son.”
Nosheen says while she is careful not to scare her girlfriends or other soon-to-be-moms, she does encourage them to be informed about cord blood banking. “Of course, we all hope that every baby is healthy, but in the event you need it, there is tremendous comfort in having access to your stored cord blood.” The only opportunity to store cord blood is at birth, so the decision must be made during pregnancy.
November 2019 – Update
In July of this year, Armaan was infused with Anaya’s cord blood at Duke University under the FDA-approved Expanded Access Program which enables cord blood stem cell therapy for children with various brain disorders.
Nosheen reports that for Armaan, the impact of the cord blood stem cells infusion has been encouraging. “Since the (cord blood) infusion, we have seen positive changes in Armaan’s upper body strength, his vision, and his coordination. Now, when he looks at us, he is more connected and can hold his eye contact for longer. Armaan is showing better grasp control and can curl his fingers to hold our hands, which he could never do before. These changes may seem small, but they are important to us, and represent a hope of a better quality of life.”
When asked about their experience, Nosheen said: “If you are expecting or plan on becoming pregnant, I encourage you to consider this option. Banking cord blood is a once-in-a-lifetime opportunity and prepares you in the event it may one day help your child.”
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. For more information on the Expanded Access Program at Duke University, click here.
[i] https://pediatrics.duke.edu/news/umbilical-cord-blood-improves-motor-skills-some-children-cerebral-palsy