The journey starts here….
Written by Kenneth Mah
On 8th November 2009 we received the most precious gift from God, our first child Chloe came into our life. We have our best Chinese New Year in 2010 where we brought her to visit our relatives and it became the only CNY where Chloe was “normal”….
In June 2010, Chloe had bronchitis and she was admitted to KK Hospital. Never did we expect her to be so sick and we were dealing with a life-threatening situation. She was diagnosed with a rare disorder called Pompe Disease and prognosis was very bad. Chloe was given 2-3 months to live because she was suffering from heart failure and there was nothing much the doctor could do for her. I was at a loss for words and I thought it might be a misdiagnosed because both Patricia and I do not have such condition.
We met a Geneticist from the hospital and she explained to us that Pompe is a very rare condition and Chloe could be the only child diagnosed with such condition. We could put her on a very expensive treatment called ERT – Enzyme Replacement Therapy with an orphan drug named Myozyme. The estimated cost for first year treatment was around $90,000 and the amount will escalate up to $300,000 per year, as she grows bigger. ERT was the only hope of survival and the chance to live beyond 1 year old for Chloe was slim due to many complications.
My wife, Patricia and I were in a dilemma whether to proceed with ERT for Chloe, knowing the cost and implications. To make matters worse, there was a chance she might have life threatening reactions during ERT and die in front of us during treatment. During that perilous night, we spoke to Chloe and asking her whether she wanted to go through ERT and carry on living. Chloe was expressionless but yet, she managed a tear and a faint smile on her face indicating that she wanted to live. I couldn’t bear for Chloe to give up her life at such a tender age and no one should have the right to deny her survival. On 6th August 2010, Chloe made into Singapore’s history by becoming the first patient to receive ERT for Pompe Disease in Singapore.
Like other Pompe Disease patients, Chloe has to go for ERT every fortnightly. During Chloe’s admission in the hospital, we sat down with the Homecare Service to discuss about caring of Chloe at home. We came to a conclusion that I would be a better choice as the caregiver for Chloe.
It was a journey full of tears, joys, fears, hope and everything that I would never expected to encounter. One thing I have learnt for sure is this:
It’s not about at which point you start the race; it’s about finishing it.
Everyday, I have to pull myself out of bed in order to perform my duty as a caregiver. Imagine I have to give Chloe her milk 8 times a day, give medicines 3 times a day, do chest physiotherapy, cough assist and suctioning several times a day. To add on to the medical intervention, daily care like changing diapers, bathing her and keeping her company when she is awake were also taking so much of my time. It was very draining and life had never been so tough for me before. I always thought my days in the army were the toughest phase in life, but this is worst than that.
It was really difficult at first to adjust my life to becoming a caregiver to a sick child. I have to force myself to adapt a new routine and it was almost impossible for someone with zero knowledge on medical care. Home was set up like a mini hospital and I need to ensure the supportive care was adequate for Chloe. As a caregiver, I even have to step up my role as a care coordinator, a nurse, a doctor, a therapist and an educator. All these were new to me and I have to be physically “on the ground” to learn and pick up the skill from the professionals. Hope and determination had always been my motto and I started to develop interest in the things that I am doing for Chloe. I began to explore different methods/way into things I am doing for her. Because of my curiosity in finding out more, I have built a close relationship with the medical team who was looking after Chloe. I had never expected that my effort would make me a recipient of Singhealth Inspirational Caregiver Award in 2012 and Club Rainbow’s Exemplary Caregiver Award in 2019.
I strongly believe my child will have quality life if I am truly involve in her caregiving journey. I kept a positive mindset and push myself to move on. I knew I have to celebrate every little improvement I saw in Chloe. She inspired me with that and kept showing me that she could get even better if I do not give up on what I am doing for her.
I started to realize that this is a kind of life experience where not many people will get to go through. Even with a fellow caregiver, our caregiving journey might be totally different. This made me wanting to learn from other caregivers so that I can better equip myself with more caregiving skills and knowledge.
While spending time with Chloe in hospital, I noticed there was a group of parents having children living with rare diseases and some of them were struggling to manage their child’s condition. I started to realize where individually we could be rare but by putting all of us together, we are not. Despite our own challenges, my wife and I felt that other parents needed help too. The calling was so strong from God and we knew we have to do something.
Hence, I founded Rare Disorders Society (Singapore) in 2011 to support rare disorder patients and their families. I hope to provide a platform where we could come together to share our caregiving experiences. It was another valuable life experience for me to embark a new journey of forming an official support group in this community.
I was once asked if given a choice again, what would be my decision about becoming a caregiver to Chloe. My answer remained the same that I have never regretted giving up on my career to become a caregiver. I would like to measure my success in life by looking at how much love I have for my family and Chloe rather than measuring it with the materialistic gain I might have provided to them.
Keeping a positive mindset is not easy, especially for a caregiver looking after a child living with a life-limiting condition. In my opinion, Chloe’s condition should be considered as chronic illness because by giving her proper treatment, we could keep the disease at bay and she could lead a relatively normal life. Although Chloe is stable most of the time but a minor virus infection could cause her life and this is where the real challenge is. Over the past 10 years, Chloe had battled death several times and one of the most critical incident happened in 2013 where I have witnessed doctor performing full resuscitation on her. During her routine admission to the hospital, Chloe suffered a cardiac arrest so doctors have to perform CPR and giving 3 shots of adrenaline to her before she was revived, and sent to ICU. It was the darkest moment in my life seeing we almost lost her and the worst was not over yet.
Chloe was intubated and given morphine in the ICU. The doctors were unable to predict if she has any brain damage due to the lack of oxygen to her brain during the cardiac arrest. Investigation was carried out to determine the cause of this episode and they confirmed Chloe had RSV (Respiratory Syncytial Virus) infection. However, it was a very common virus infection among younger children and it shouldn’t have caused any heart related issue. Then the X-ray showed that there was mucus plugging at the bronchus leading to her lungs and they finally concluded that it was more of a “mechanical” issue, which leaded to the cardiac arrest incident. After 2 weeks in the ICU, the doctor tried to ex-tubate her but was unsuccessful and I was inform to be mentally prepared for her to have a tracheostomy. This was definitely not what I wanted for her because it might affect her quality of life. She was again intubated and all that I could do was to pray for another miracle. Thankfully, the second try of ex-tubating her was successful and Chloe was eventually discharged after spending 23 days in the ICU.
Although Chloe had recovered fully from the infection, I noticed she wasn’t the same as before. We have to put her on ventilator the whole day and she started to drool more than before. Her body had got weaker and I need to work to build up her strength again. Each time when Chloe fell sick, I noticed she would get weaker and lost some of her abilities. To me, it’s like her body will be reset to zero and I have to start all over again to build her up. The most significant areas were her ability to mange her secretion and standing. It was painful to see that she fell sick and it’s kind of frustrating to know that we have to start all over again and go through the same old journey to build her up each time. Perhaps this is the way Chloe wants to remind me that I should not slack and I need to be always provision in my caregiving skill.
(In April 2018, a similar incident happened again and this time, it was at home. You may wish to read about it at http://www.savechloe.com/my-story-2/facing-death/.)
You’ll never walk alone…
In my caregiving journey I got to know many parents in the same situation as me. It’s not easy but all of us remain positive and never surrender ourselves to faith. We continue to move on and remained hopeful that our children will be free from all their conditions one day. Despite their own challenges, these parents have motivated me along my journey and they are truly the best parents in this world.
I live with a hope that one day a cure will be found and Chloe will be free from Pompe Disease forever. I will continue to be her caregiver until the last day and leave our future to God. No one can take away the best that I have given to Chloe and we will walk this journey together, and forever.
Time doesn’t wait for anyone and money cannot buy heaven’s plan. I do not wish to look back to what had already happened and how my life has changed. It may not be the kind of life that I wanted but it is certainly not as bad as what I thought it would be.
I would like to be there to inspire other families with what I have achieved with Chloe and continue to let my caregiving journey be an inspiration to new parents who have just started their journey.
I know I will not be alone in this extraordinary journey because of the people around me. Their love for Chloe and my family will always motivate me to carry on.