Born with cerebral palsy, seven-year-old Ee Han cannot walk, change his clothes or feed himself. But his cord blood has offered a lifeline to a better life. His father shares his story with EVELINE GAN
ILLUSTRATION LOY SZE JIN
Born with cerebral palsy, seven-year-old Ee Han cannot walk, change his clothes or feed himself. But his cord blood has offered a lifeline to a better life. His father shares his story with EVELINE GAN.
When 37-year-old Desmond Tan held his baby boy in his arms for the first time, he envisioned years of fun outdoor activities and roughhousing ahead.
Little did the first-time dad know that Ee Han may never be able to walk unassisted, much less dribble a ball or ride a bicycle.
At three days old, he was found to have severe hearing loss in both ears after failing a routine hearing test. But it wasn’t until he was three months old that his parents began suspecting that something was amiss.
“His neck was soft and he still could not support his head, and that was when we decide to take him to the hospital for further checks,” says Desmond, an IT professional.
The doctors dropped a bombshell: their little one had cerebral palsy.
It is a permanent condition that affects muscle control and body movements due to a brain injury or damage that occurs when the brain is developing before, during or after birth. The type of cerebral palsy Ee Han suffers from has left him unable to control his arms and legs from birth.
The doctors could not offer any explanation for the condition; he had appeared healthy during pregnancy scans and at birth.
“My wife felt as if her world had come to an end.
I was looking forward to sharing my love of sporting activities with my son. When the paediatrician said that Ee Han will never be able to engage in any sports, I was devastated,” Desmond says.
Their only child’s inability to enjoy sports is just one of many obstacles he would face. Over the next few years, Ee Han struggled to hit basic developmental milestones that other parents take for granted, such as sitting up, crawling, drinking from a straw, or clapping.
Ee Han managed to sit on his own and crawl, using his arms, only at the age of two years. His severe hearing loss further added to his list of everyday challenges.
Particularly heartbreaking to his parents was his inability to interact with them or control his emotions.
“He would often stare blankly into space. He would also swing from laughter to cries, and back, in seconds,” shares Desmond.
Nothing to lose
In 2014, the Tans found a glimmer of hope when they noticed another child with cerebral palsy, who was in the same early intervention programme as Ee Han, began showing marked improvement after undergoing a new treatment.
cord blood: should you bank on it?
Once routinely discarded as medical waste, umbilical cord blood is now a life-saving hope.
To date, stem cells from cord blood, which have the potential to replicate other blood cells, have saved people suffering from certain life-threatening cancers and blood diseases.
In recent years, they have also been used to treat neurological (brain) conditions like cerebral palsy, autism, Alzheimer’s disease, and Parkinson’s disease.
GO PRIVATE OR DONATE?
There are currently three private cord-blood banks in Singapore – namely Cordlife, Stemcord and Cryvovia.
Storing umbilical cord blood for private use, which typically costs approximately over $200 per year for about 21 years, has become a form of “insurance” against illnesses. Cord blood stored in a private bank can be tapped on for personal or family use in the future.
But some experts say: Don’t bank on it.
The American Medical Association, The American Academy of Pediatrics, and The World Marrow Donor Association encourage public over private cord-blood banking.
For one thing, research has shown that the chance of a person – with no known medical conditions – ever benefiting from his own cord blood is “an extremely low probability”, says Dr William Hwang, medical director of the public Singapore Cord Blood Bank (SCBB).
“It is estimated that the chance of such use is somewhere between 1 in 2,000, and 1 in 200,000.
In most instances, using blood stem cells donated from an unrelated donor may be the best choice,” he adds. It is also too early to tell whether a person’s own cord blood can successfully treat conditions like cerebral palsy or autism, as clinical trials are ongoing, says Dr Hwang.
“We encourage mothers to donate their baby’s cord blood. This has shown great success in saving tens of thousands of lives around the world,” he adds. SCBB has facilitated 200 cord-blood transplants both in Singapore and around the world, as of Nov 3 last year.
“Ultimately, it is up to the family to discern and decide for themselves if they would like to donate or store it privately.
To make an informed decision, families can consult their doctor and contact the public and private cord-blood banks.”
While the transfusions were not a magical cure, there were noticeable improvements in the sevenyear- old’s temperament, muscle control, coordination and strength.
In Singapore, about 10 children with cerebral palsy have been treated with their own umbilical cord blood, according to consultant neurosurgeon Keith Goh of International Neuro Associates. They each received an infusion of their cord blood stored at birth.
“We heard from the child’s mother that his mobility and sleeping habits all improved tremendously after the cord-blood transfusions.
She highly recommended it to us, and that was when we recalled we had Ee Han’s cord blood stored with Cordlife,” says Desmond.
Like many other babies, Ee Han’s cord blood would have been routinely discarded as medical waste had his parents not signed up to store it in one of the three private cord banks.
That decision now offers them a ray of hope.
There is currently no cure for cerebral palsy. Children with the condition usually undergo intensive therapy, aimed to improve their motor skills and their learning differences.
Ee Han’s days revolve around his therapy sessions, which take place up to twice a week and require longterm commitment. They cost about $200 to $300 a month after government subsidies. His mother, Siew Kit, 38, stopped working as he required full-time care, but his progress remained painstakingly slow.
Sharing his reason for going ahead with the cord-blood transfusions, Desmond says they have “nothing to lose”.
“We had lengthy discussions with Dr Goh about the clinical trials, which were done overseas.
There is little risk as the treatment involves putting my son’s own cord blood back into his body. Plus, we’ve also seen a positive testimonial,” he adds.
As the treatment is still in the pilot stage, Desmond shares it took a “tedious” two to three months for the relevant authorities to approve their request to use the boy’s cord blood for the two transfusions, which cost over $10,000.
But the positive results made everything worth it. While the transfusions were not a magical cure, there were noticeable improvements in the sevenyearold’s temperament, muscle control, coordination and strength within weeks.
“The best part of all is that he is more responsive to us and maintains better eye contact now. He also has better control of his emotions,” says Desmond.
“The most memorable thing was seeing him having fun ' ghting' with his sevenyearold niece – they were trying to slap each other in a fun manner. Before this, we never saw him interact with another child.” Although Ee Han, who currently weighs about 20kg and is 115cm tall, still depends on his parents for day-to-day tasks such as washing up, changing clothes, getting around and eating, his therapists believe it is a matter of time before he stands and walks.
“He is growing taller and heavier every year, so our top priority is to address his mobility issues.
Once he can stand and walk on his own, that will be a huge achievement for him and a huge relief for us,” says Desmond.
Until then, his loving parents will be there to cheer their son on, every step of the way.
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