Facing Death
Death is not something we like to talk about yet it’s something we all have to go through…
Are we prepare when facing death? Read about what we just went through with Chloe here….
In 2011, we spent around 4 months to publish an information paper on how patients diagnosed Pompe Disease receive reimbursement for their ERT. It was a very difficult journey to begin with knowing Singapore doesn’t have any funding to support us. As a middle in-come family and staying in a condominium with our parents, this…
Chloe celebrated her 5th birthday and it was a milestone that we never dare to dream of. We thank God for protecting her and giving us the chance to continue having her with us. It was amazing to walking this far with her! We do not know how many 5 years we will have with…
On 28th Sept 2023, Daddy Kenneth was conferred the Singapore Silent Hero under the “Outstanding Adult” category. The award was presented to daddy by our Deputy Prime Minister Lawrence Wong during the ceremony held at Shangri-La Singapore hotel. Daddy, founded the Rare Disorders Society (Singapore) with Mummy Patricia in 2011 after Chloe was diagnosed with…
We were invited to share about Chloe and our journey to mark 2021 International Pompe Disease Day (14 April). Though this sharing, we hope to raise the awareness on rare diseases in Singapore and having more people to learn about what rare disease community. We can read about the story here.
In October 2019, we made a very tough decision to put Chloe through tracheostomy. It was a start of a new journey for of all of us. It hurt so much to accept the fact that Chloe will need a trachea tube now than later in her life. We don’t deny the fact that she…
In 2011, we started a Save Chloe campaign selling CNY goodies to raise fund for Chloe’s needs. It was a huge success as we raised over $10,000 every year. The yearly campaign came to an end in 2017 and we are looking forward to having new ideas to support Chloe. Read about the campaign here.
We are home but Chloe is still not fully recovered from the infection that nearly took her life. Her left lung is still very quiet and her doctor is not happy with it. We hope this week things will be better. [19th Apr 18]
On 29th March 2018, Chloe was at KKH to receive her regular enzyme replacement therapy when she developed a mild fever. We kept her there for a night and she was discharged on Good Friday evening.
On Saturday, I woke up as usual at 8am and my routine was to go marketing. But somehow I didn’t feel like it and chose to stay home instead.
At 11.30am I went to take a shower and when I came out, my helper told me that Chloe had desaturated to 84%. My helper had already done a round of cough assist. Chloe was still coughing, so I continued suctioning and that’s when things started to go horribly wrong…
I started to notice she was trying to catch her breath. Immediately, I started to do percussion on her chest but she continued to turn blue. I shouted for the ambu bag and started to bag her with 15L of oxygen on.
However, her vital signs continue to drop. In that split second, I asked myself if I should give her CPR if she needed it. [I had learnt it….] I started to ask God, is this the time that He is taking her away. I was asking myself if I should just let her go or do whatever I can to bring her back.
I don’t know why I thought of that when I saw that I was losing her. I lost all confidence and didn’t even know if I could perform CPR on her. In my heart, I cried for God to help me and the cry got louder as I watched her slipping away slowly.
Then the oximeter alarm got louder and both SPO2 and HR were showing zero! That’s when I went crazy and started CPR on her. All I wanted at that moment was to have her back no matter how long it would take me.
I shouted to her, “Chloe, don’t you quit on me now!” and I prayed for God to help me. The thought of letting her go was not there anymore. That’s when I realised that I wasn’t ready at all to surrender her to God.
My helper was still bagging her but I decided to do mouth-to-mouth and that’s when I gave her the longest and hardest breath of my life. I was racing against time and my compression counting went from 1 & 2 & 3 & 4 & 5 to 1,2,3,4,5,6… To be honest, I went blank but somehow my helper said that I still managed to give her instructions to call an ambulance and get her to bag the proper way while I am doing CPR.
The counting was completely wrong and I lost count of how many cycles I performed…until I finally heard the beeping of the oximeter again. I continued to do chest compression until I saw Chloe’s heart rate was 130. I did one more suctioning through her nose and managed to pull out some thick secretions this time. I could see that her colour had returned and she wasn’t blue anymore.
Just when we had her pulse back, the ambulance arrived and the medic rushed into her room and took over from me. Chloe was still unconscious. There was still not breathing and I continued to do suctioning while I asked my helper to put her on ventilator support. The medic inserted an airway intubator and continued to supply oxygen to her as we prepared to rush her to the hospital.
She remained unconscious and the medic asked what was her downtime. I replied “maybe 5 mins”. But my helper intercepted and said I took between 10 to 15mins to revive Chloe. That’s when I realised we could be facing something I feared most – brain damage.
This question of the downtime was asked several times, as it is critical to determining the expected damage to Chloe. I was so traumatised. I did not know if I was quick enough to revive her. My heart was crying silently watching Chloe got intubated at NTFGH resuscitation room. While on our way to KKH via KKH CHETS ambulance, I couldn’t hold back any longer and tear just flowed out from my eyes.
In front of everyone, I still put up a brave front and ferried my wife Patricia and helper home to rest. After a quick shower, I went straight back to KKH CICU to be with Chloe until early morning. I went home again and after my shower this time, I sat in my room and cried uncontrollably. Patricia came to me and assured me Chloe is going to be fine. I was scare, dead scare that she will never wake up again….
A day after Chloe was transferred to KKH CICU, Chloe’s palliative care Dr Chong came to see us and it was the first time I shared about this selfish thought in me for not wanting to save her.
I asked him if I didn’t save her, would it be the same as I have killed her by stopping the life support equipment on her. Dr Chong was very calm and he said to me “First, we are all human and what you want for your child is not to see her suffer. It’s good for you to know more but because you have experienced it with other families you understand the risk of the long downtime she had, and that you are going to lose her eventually. So it’s not a selfish thought but more of a rational thinking process since you know brain damages will lead to more issues.”
Dr Chong said that he was happy that I was brave enough to share about this ‘selfish thought’ in me because it a sign that I will not carry this burden for the rest of my life. He congratulated me for doing the right thing eventually as the father instinct took over and I did what every father will do.
The 19 days of admission was never the same as compared to all our previous hospital stays. Chloe has been through death several times in the past, but we were always there to witness the medical team bringing her back to life.
This time, it was me who did it with my own hands and the experience was extremely different. There was this inner struggle at first about whether to do CPR or not. Then it was the blank moment not knowing if I am doing the right thing. Followed by the worry of not doing it quickly enough to get her back and finally, the fear of having to making the painful decision of letting her go again.
God has given Chloe a second life through my breath and hands.
All these years I have been praying for proper closure when the time is up. I believe through this experience, He is answering my prayers.
I am not ready to let her go just yet. I know I can never be ready. Chloe has given me new definition and new meaning to my life. Doctors have been telling me every day is a bonus for me and I shouldn’t be asking for more.
All I hope for now is to love her like I have never loved before and not hold back my feelings for everyone in the family. Life is so fragile and we can never know when is our last day.
I was once asked, “What is a good death?” Perhaps when I have an answer I will accept her death completely.
I pray no parent with medically fragile kids will have to go through this kind of experience. I really salute those who have been through the experience of their child facing death. Whether their child survives or not, it will be the most difficult moment in their life.
Because I wasn’t willing to let her go like that, I am glad I did what I should and did not hold back. So, God has taught me a lesson about not doubting myself. I urge parents to do it if you can. We cannot predict the outcome.
God is always in control.