Little Chloe was born prematurely on Nov 8, 2009, at 2.695kg, 35 weeks gestation. She winked at mummy and stuck out her tongue the moment she was put into mummy’s arms! She cried when the nurses brought her away from mummy, to weigh her. Upon mummy calling her name, she stopped at the familiar voice. How intelligent and all thanks to the months of bonding through storytelling, singing, prayer, and constant conversation when mummy was expecting her. Besides being admitted for jaundice (which is very common among Asian babies), she had been a healthy and above-average baby in terms of weight and overall development. She was extremely responsive and she amazed friends, family, and doctors. She brought so much joy to all. She even went for her first swim at four months old and embarked on her semi-solid foods well. Whenever she went for injections or blood tests, she was the most cooperative and brave.
When it all started:
All was well until when she was more than five months old. She did not feed well anymore and seemed quite uninterested in toys. Many attempts had been made to let her practice her motor skills, e.g. grabbing toys and food, turning over from back to tummy, sitting up by herself with hands pressing against her feet in front, but to no avail. We started to wonder if she was just lazy. We were perplexed why a baby who was ahead of others when she first started out, would lag behind so much for no reason. We were referred to a specialist at KK Hospital who dealt with the growth hormones program.
The growth hormone specialist was not sure if the problem had been properly diagnosed as yet. He spoke to several other specialists in other fields and ordered different tests to be done, before deciding the course of treatment. We were also given appointments with neuro-muscular and genetics doctors.
Meanwhile, little Chloe fell ill. Her temperature was erratic over the next week or so. We brought her to several doctors during this period. Eventually, we went back to her pediatrician at Gleneagles Hospital, who referred us to KK Children’s Emergency.
Upon registration, six to seven doctors attended to Chloe immediately. Mummy and daddy wondered why the commotion when was just bronchitis. Chloe was hooked up to several machines, including a respirator. Despite appearing normal and rosy to us, the doctor mentioned she was experiencing breathing difficulties. An X-ray was done and they discovered that her heart is enlarged! Further investigation was done via a cardio scan. Screenshot after screenshot, measurements after measurements were taken. We felt we were waiting forever. The screening showed that her heart muscles had thickened. Specialists came in one after another. No one could arrive at a conclusion about her condition. A senior consultant was called in. After much deliberation among themselves, the senior consultant said in a very serious tone, “Mummy and daddy, please come with me. I need to speak with you.” Mummy’s heart sank. It felt like something was terribly wrong.
In the other room, the senior consultant related her heart condition to us and what their suspicions were. Several tests needed to be carried out to confirm the underlying condition. However, he warned that one of the highest possibilities was a condition called congenital hypertrophic cardiomyopathy which meant that Chloe might not live beyond one year old! We were lost and felt giddy!
Torn between decisions
Two weeks after admission and under intensive care, on 2nd July 2010, Chloe was confirmed to be suffering from a very rare genetic condition – Pompe Disease (which weakens her overall muscles and caused heart failure due to an enlarged of her heart).
We had been presented with hard facts about Chloe’s current condition and her bleak chance of living a quality life. The only treatment (not cure) – enzyme replacement therapy (ERT), is proven to help with improving the heart condition and the overall muscular function. However, the patients may suffer from the side effects or develop antibodies against the infused enzyme. Doctors are not sure if she will react to the enzyme at all. Even if she does, when that will happen, and or how well the treatment can help her. The cardiologist even commented that it is a matter of time before she passes on due to the weak and progressive heart condition. He is afraid that the heart may even give way before the effect of the enzyme kicks in. Others predicted that Chloe’s best-case scenario is still wheelchair-bound. Worse still, she may need respirators and feeding aid, even if we manage to keep her alive. In addition, patients with such conditions tend to have a short(er) life span. To add on to all these is the hefty medical cost of about $200,000 to $300,000 per year (and increasing as she grows older and requires higher dosage). This will be a lifelong treatment if we wish to keep her alive.
We grappled with the decision of whether to let Chloe go through the treatment. Not for selfish reasons like being afraid to make major adjustments to our standard of living, rather, we do not know if we will be helping her at all or are we just prolonging her suffering. What if the doctors’ predictions come true? What if she starts to understand and blame us for keeping her alive when she cannot do what a normal person can do (e.g. feed herself with her hands, play and run about with kids of her age, etc)? What will become of her when we pass on before her? Or what if she reacts wonderfully well to the treatment but we still got to give up her life, because we run out of financial resources to pay for the treatment? At the same time, we cannot convince ourselves to give up her life at eight months old simply due to uncertainties and predictions. We do not have the right to deny her the chance to fight for herself.
After praying very hard for signs, we saw with our own eyes that she was trying very hard during her physiotherapy sessions in the hospital. She was also getting stronger and happier every day. We decided that it was God’s way of telling us to let her go through the treatment and that there will be a miracle healing for her.
In the long haul
As parents, we can only give her what we have and can afford. We are ready to give our all for her. She deserves all the love and care in this world. We are willing to give up our cars, apartment, and all the possessions, but even all these will not be enough to pay for her lifelong treatment. No ordinary working-class parents will be able to afford the medical fees. As the condition is very rare, no organization nor government body provides funding of any kind in Singapore. Hence, we need the collective efforts of many kind souls out there to help save our baby’s life. We pray for God’s grace in our effort to give Chloe life.
Chloe has shown to us her will to live and she fought bravely against death several times during the past 11 years. We know God is always there with us and our journey will not be lonely.
God has spoken to us and we know Chloe is here to glorify His name! In 2013, we were successful in getting her medical insurance to cover her hefty ERT cost. God has also given us the strength, knowledge, and determination to establish a non-profit organization called Rare Disorders Society (Singapore). With His grace, we create a blue ocean for children like Chloe!