SingaporeMotherhood | Baby & Toddler
November 2024
$2.4 Million to Give Our Baby a Chance Against Spinal Muscular Atrophy
“To say that the journey was a rollercoaster ride is probably an understatement,” says Lavin Chong, a marketing manager in a fintech company. She and her husband, Andy Wang, both in their early 40s, were ecstatic to welcome baby Lucas to the family last year. But by his second month, something felt off — Lucas didn’t seem as active as other babies his age. Their greatest nightmares were realised when their bundle of joy was diagnosed with Spinal Muscular Atrophy (SMA).
Welcoming Our Bundle of Joy
“I’m just a typical Singaporean woman, working hard and playing hard in my 20s. I always thought that getting married and then having kids of my own would be a natural process. But as I was nearing the end of my 30s, I realised I should not wait anymore. At age 38, I questioned myself — would I regret doing IVF now, and the answer was: I don’t know.
(See also: When Should You Consider IVF, if you are Trying to Conceive?)
Then I asked myself another question — would I regret it if I didn’t do IVF now; the answer was yes. If I did not utilise all the available options to help me get pregnant, I would blame myself for the rest of my life for not trying harder. But if I tried and still remained childless, at least I would not regret it. It would be a pity, but no regrets.
So when Lucas came along, my husband Andy and I were overjoyed. He was born small, but very soon grew into a chubby baby who smiled and laughed a lot.
But at week 10, Lucas developed a fever one night. We went to the hospital because the clinics we approached do not see infants below three months. Whereas at KKH, infants below three months old get priority.
Just a day earlier, Andy and I had been discussing the lack of movement in Lucas’ legs, so Andy asked the doctor on duty to also check his legs. That prompted the doctor to ward Lucas for observation and conduct a series of checks.
Descending into Darkness
It was already past midnight when Lucas and I got to the ward. Only one parent was allowed to stay with Lucas. Subsequently the neurological team was alerted. Within hours of admission, the team performed another round of observational checks and even inserted a nasogastric (NG) tube. A sinister feeling began creeping up on me as I went through the motions. I messaged Andy, telling him something wasn’t right …
Lucas’ plight came to light as the sun cut through the ominous darkness. We were first told that he has a muscular disorder but a blood test would be required to tell us which type of muscular disorder. As it turned out, Lucas was not only born with Spinal Muscular Atrophy. He had Type-1, the most severe form of SMA, with a life expectancy of only two years.
(See also: Spinal Muscular Atrophy (SMA): A Parent’s Role in Early Detection & Care)
We were devastated. Yet when the blood test confirmed his diagnosis, ironically, it gave us a blink of hope because we learnt that SMA is the only muscular disorder with a one-time treatment. A form of gene therapy, Zolgensma is most effective when administered as early as possible, even before symptoms are present.
However, we immediately plunged into despair again after learning its astronomical price tag. At SGD2.4 million (in 2023), Zolgensma is also known as the world’s most expensive medicine. Unfortunately, Zolgensma is not a subsidised medication in Singapore, nor does the Rare Disease Fund cover SMA treatments.
Racing Against Time
In the days after the diagnosis, it was heartbreaking to watch our baby being poked with needles and attached to tubes. In a trance-like state, we learned how to take care of an infant with special needs and set up the home care system that he needed.
We could bring Lucas home, but he had to wear a nose mask connected to a ventilator while he slept. He was also connected to an Oxisensor via his toe to monitor his oxygen levels and heartbeat.
(See also: Genetic Carrier Screening in Singapore: What you need to know)
Then came the adrenaline rush as we raced against time to set up crowdfunding for Zolgensma. We knew that once muscle dies, it can never be restored, so the earlier Lucas received the treatment, the higher the chance of him developing essential motor skills. These are part of the basic skill sets that everyone needs to function independently.
We were exhausted to the limit, yet we were very thankful and very touched by the generosity of all the people who donated, all those people who helped us in our crowdfunding efforts, and all the encouragement that poured in.
Waiting and Hoping
Even after raising the needed sum, we waited eagerly for another two weeks before Lucas received Zolgensma. I remember that the night before the treatment, I asked my husband what he would like to do after this. He said he just wanted things to go back to normal.
Normalcy had become a luxury for us, and little did we know at the time that life was never going to be normal again. Many people, including us, had thought that Lucas would recover after the treatment, and become a ‘normal’ baby.
(See also: Craniosynostosis Shaped Her Little Girl’s Head, but Didn’t Change Her Big Heart)
Finally, we brought Lucas back to the hospital for the treatment. It was injected intravenously over 60 minutes through a fine needle. They actually inserted two needles into him: one in his leg, the other in his hand, just in case. Andy and I watched anxiously over our baby from a distance over that one hour. We could not go too near since we had to leave space for the medical team in case of emergency.
But it was as if four-month-old Lucas knew what was going on. For that one hour, he didn’t cry or fuss. He was just looking around. It seemed as if he knew what was going on, as if he knew he was getting a new lease of life. He fell asleep soon after the injection was over.
Continuing to Wait
Post-treatment, we shuttled between home and hospital for weekly blood tests and medical reviews. Besides those, we had to confine him to the house to keep him infection-free.
To be honest, I had unrealistic expectations about Zolgensma. I thought Lucas might be slower to pick up the developmental skill sets, but that he would soon be a ‘normal’ baby.
‘Normal’ life with a baby is feeding with a bottle instead of worrying if we inserted the NG tube correctly. Or playing with him happily instead of doing physiotherapy every day. It would be watching him sleep soundly instead of jumping at the beeping from his Oxisensor when the oxygen level falls below a certain limit.
Every time someone asks me if Lucas is getting better, I struggle to find an answer because SMA is not a disease that one can recover from. Zolgensma is a treatment, not a cure.
In fact, the real challenge was that Lucas remained floppy in the months following the treatment. He could not do tummy time, could not sit up, and depended on us to carry him all the time. He had diarrhoea, vomiting, and feeding aversion. Even till today, he remains dependent on the NG tube for feeding.
(See also: Haemophilia & GDD don’t stop Jue Ming from being the Light of his Mother’s life)
Looking Up
Things started to turn for the better about four months after Zolgensma. We were thrilled when Lucas started to sit up, even if with support. All the physiotherapy that Lucas’ daddy worked on with him started to pay off! Slowly but surely, Lucas was picking up motor skills.
We knew his cognitive skills were good but affected by his lack of strength and muscle tone. So when he started gaining strength, we were delighted to discover how much he knew. His social skills are amazing and although unaffected by his motor skills, he now has more energy to interact with people.
Lucas is almost 19 months old now. He can move his legs and sit up. However, he still cannot crawl or lie on his tummy, much less stand. And we are unsure when he can start to walk. Our doctor advised that physiotherapy is the key and possibly the only course that can help Lucas strengthen his muscles.
Andy, who gave up his career to stay home and look after Lucas, continues to do physiotherapy with him daily. Sometimes I think he is becoming a professional at it! Almost every physiotherapist we meet compliments him on how good he is in handling Lucas.
(See also: Wings of Change: Judith’s Fight for Her Special Needs Child Creates Ripples of Hope across Asia)
We also started Lucas on a dual treatment recently after learning about it from other parents of SMA children. To complement physiotherapy, he also receives Risdiplam, an oral treatment for SMA.
Hope Springs Eternal
Lucas continues to show improvement every day. He still has not caught up with other toddlers his age, but he is a smiley boy. He brings joy to our family and smiles to other people’s faces.
There will be more challenges ahead. As Lucas grows older, it becomes more obvious that he is a child with special needs. He will need to overcome not just physical demands, but emotional and mental challenges too. I hope that he will continue to be a happy boy, resilient to whatever hardships may come his way.”
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