Desmond Tan details the improvements he has seen in his son’s movement, motor skill and muscle tone disorder.
“My son, Ee Han, is now 7. We discovered that he has cerebral palsy when he was 3 months old. Then, we’d noticed that his neck was too soft and he couldn’t hold his head up on his own. Furthermore, he had also failed his hearing test during the first few days of his birth.
After seeking advice from a few doctors, one paediatrician said that it was highly likely he had cerebral palsy ― a disorder that affects muscle tone, movement, and motor skills.
We brought him to KKH for further checks and it was confirmed that he has Global Developmental Delay and Quadriplegic Cerebral Palsy. An ENT doctor confirmed that he also has severe hearing loss in both his ears.
My wife and I were devastated.
I am an outgoing person and I love sports and outdoor activities. So, when the paediatrician said that Ee Han would not be able to engage in any sports, I was even more upset. But for my wife, it felt like her world had come to an end.
“For my wife, it felt like her world had come to an end.”
We learnt that Ee Han would have to undergo extensive therapies and use expensive equipment, just to help him do things that normal children his age would take for granted, such as drinking from a straw, or clapping his hands.
As he got older, he started going for multiple ― including occupational, audio-verbal and feeding ― therapies. These require a long-term commitment, but they will eventually improve his motor skills and other conditions.
He uses equipment like walkers and activity chairs to help him improve his day-to-day quality of life, but such aids are usually expensive.
Ee Han does not speak because of hearing loss ― as a toddler he started making more sounds only after wearing hearing aids. Mobility wise, he only managed to sit up on his own when he was around 2, and he started to crawl using just his arms around the same time, too. He does not interact with gestures and his eyes often stare into blank space.
We sleep on mattresses on the floor, so that we don’t have to worry about him falling off the bed. We usually get around by taxi. Our public transport is good, but sometimes it just gets too crowded and we tend to get unwanted attention and sometimes insensitive comments on public transport.
Ee Han is able to stand with support, but we needed to install grab bars in the toilet. We usually prepare food that is suitable for him, or go to places that serve semi-solid food like porridge.
Click through for deets on how a cord blood infusion helped improve Ee Han’s quality of life!
My wife, Siew Yit, is his full-time caregiver ― one of the biggest challenges we face is caregiver fatigue. As he gets older, it is becoming physically and mentally more challenging to handle him.
We’ve learnt to be more patient as every aspect of Ee Han’s life moves at a slower pace. We still have to take care of him like he’s a baby, as he is still fully dependent on us for daily activities such as washing up, changing his clothes, getting around and feeding. We plan our schedules with allowance for unexpected delays.
In 2014, during a class outing with EIPIC (Early Intervention Programme for Infants & Children), we chanced upon a kid from another class with a similar condition to Ee Han. According to the child’s mother, his mobility and sleep habits had improved a lot after a cord blood infusion.
It was then that it occurred to me that we had stored Ee Han’s cord blood at birth. We went to find out more about it and learnt that the process basically entails injecting Ee Han’s cord blood back into his own body.
“He is still fully dependent on us for daily activities such as washing up, changing his clothes, getting around and feeding.”
However, the administrative process is tedious. A panel of doctors had to be formed to evaluate Ee Han’s case and it had to be submitted to MOH for approval, before the actual transfusion could take place. The approval process took two to three months.
Ee Han went through two rounds of cord blood infusion. We noticed several changes in him within weeks ― the most memorable was seeing him have fun ‘fighting’ with his niece. We had never seen him interact with another child before.
After the second round of infusion, we noticed within days that he could get up from a lying down to a sitting position much faster than before, and he started to have fun repeating this sitting up movement. We also noticed that he had better control of his emotions. He used to swing from laughter to cries and back in seconds, but he seldom does that now.
Even more amazing is that he has started to ‘doggie crawl’ over the past year, and has been more proactive in reaching out for the things that he wants.
Our current priority is to help him continue improving on his mobility issues. Once he is able to stand and walk on his own, it will be a huge achievement for him and a huge relief for us.”
Desmond Tan, 37, an IT professional, is dad to Ee Han, 7.
How necessary is it for you to bank your baby’s cord blood? Next.
Pregnant and thinking about whether banking your baby’s cordblood is a viable option? We posed some key questions to Dr Li Ming Ming, laboratory director at Cordlife Singapore.
What are the potential uses for my baby’s cord blood?
Dr Li: Umbilical cord blood is a rich source of Haematopoietic Stem Cells (HSC) that help to replenish blood and regenerate the immune system. They have the unique ability to differentiate into various types of cells found in the body such as red and white blood cells, as well as platelets. HSCs can be used for replacing and regenerating damaged or diseased bone marrow, the treatment of blood cancers or blood related disorders, correcting genetic defects, or potential cellular therapy and regenerative medicine.
Storing your baby’s cord blood will give him ready access to his lifesaving stem cells if he ever needed a stem cell transplant. His cord blood will be a 100 per cent match for him, with no risk of post-transplant rejection. Cord blood stem cells are currently being used as a standard treatment for over 85 diseases, including certain cancers like leukaemia and lymphoma, blood disorders like thalassaemia, as well as autoimmune diseases and metabolic disorders. There are also ongoing research and clinical trials to include treatment options for cerebral palsy, autism, diabetes, stroke and spinal cord injuries.
“His cord blood will be a 100 per cent match for him, with no risk of post-transplant rejection.”
Can the cord blood be used by relatives or other people if I have it banked?
Dr Li: As cord blood does not require a perfect match between donor and patient, it is easier to find a suitable match within the family, as opposed to searching for a bone marrow donor, which requires a perfect match.
What is the process for banking cord blood?
Dr Li: When you sign up for cord blood banking, a personalised cord blood collection kit will be issued to you. You will need to inform your obstetrician/gynaecologist that you have enrolled for cord blood banking.
On the day of delivery, bring the collection kit to the hospital and pass it to the nurse. When your baby is born, the umbilical cord is clamped and cut. The doctor will then insert a needle into the umbilical cord to collect the remaining blood. This will be stored in a sterile collection bag. The process of collecting your baby’s cord blood is safe, quick, painless, and non-disruptive to both mother and child.
After the collection is complete, the doctor will attach the pre-printed labels with your information onto the collection bag, and place this into the Cordlife collection kit for collection by our medical courier within 24 hours.
In the case of Cordlife, a fully automated processing technology harvests up to 99.88 per cent of stem cells from the cord blood, and the stem cells are frozen gradually in a controlled-rate freezer where the temperature is lowered by 1 to 2 deg C per minute. This gradual process protects the viability of the stem cells. They are then transferred into a vapour-phase liquid nitrogen storage tank for long-term cryopreservation. This will remain safely stored and ready for immediate use should the need arise.
How much does it cost to bank cord blood in Singapore?
Dr Li: At Cordlife, for instance, the average cost is $250 per year for the contractual duration of 21 years. Singaporeans can use their Child Development Account (CDA) to pay for cord blood banking.
Photos: Desmond Tan
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