I've been wanting to write about K's experience on the ECMO as a record of her battles won at the PICU. Today, I found the motivation to do so. This is for you, Chiew Nee. Though we have not met before, the text exchanges make me feel like I've known you longer than the actual. Maybe it is because of the familiar worry we have for our little ones. Remembering your family as you make decisions on how to help little R, and for R as he fights to overcome his heart issues and pulmonary hypertension problem.
It happened on 3rd of Feb this year - the fourth day of the Chinese New Year celebrations. The usual festive celebrations and visits to our relatives were replaced by camps at the paediatric ICU as K had a severe bout of respiratory infection (bronchiolities followed by pneumonia) due to the metapneumovirus. By the third day of admission, she had regressed so much that the doctors had to intubate her to support her breathing. Even then, she did not do well. Doctors had to increase her oxygen and nitrous oxide gases, as well as the pressures from the ventilator. She had to receive a blood transfusion, which unfortunately, triggered some reactions in her body and made the situation worse. It probably caused some kidney damage, resulting in the need for kidney dialysis. Thankfully, this was just a temporary treatment.
On the fifth day of admission, Dr Terence broke the news that I was dreading to hear. K had worsened so much that she had to be put on ECMO (Extracorporeal Membrane Oxygenation) and that was her only hope of survival. Dr Terence has always been very encouraging and positive in how he handles K's case, and though his words came out with love and concern, they cut through my heart.
If she were my child, he said, I would let her do this.
I started crying. Very badly. It was one thing to know that my child had to go through this high-risk treatment, it was another thing to realize that she was dying. I must have looked very "unglam" at that time, but I couldn't care less.
What is ECMO then? ECMO is a heart and lung bypass machine that takes over the functions of the heart and lungs so that the organs get to rest and heal over time. Two cannulas (tubes) are inserted into the right side of the neck to allow blood to be drawn from the body into the ECMO circuit and back to the body (note: there are other ways of administering ECMO). This treatment is administered to patients as a last resort when all other treatments fail to improve the condition. K almost needed ECMO when she was first hospitalised and diagnosed with pulmonary hypertension in 2013, but she managed to pull through before that happened. So naturally, we (ZY and I) associated ECMO with dying and wanted to avoid it. It also comes with high risks that will lead to many complications - even death. For example, there could be bleeding in the body due to Heparin (an anti-clotting medicine) which thins the blood to prevent blood clots in the ECMO circuit. If bleeding occurs in the brain, it can cause brain damage or death. There is also increased risk of infection, as blood is exposed to the outside environment of the body. A stroke may occur if blood clots form in the body. The ECMO process works by having an intricate balance of all the components involved to prevent any of the complications we feared. There were many children who still lost the battle despite being on ECMO. However, this scary process was the only option left to give K a chance to rest her frail body, and hopefully to be able to survive it all, else she would definitely lose her life.
During the 9 days of ECMO, the (big) team of doctors, nurses and respiratory therapists were vigilant in their care for K. There were so many doctors involved in K's case and they met up every morning to check on her and to discuss the next course of treatment as a team. The team constantly monitored her vital signs and watched for signs of discomfort. The Bair Hugger Blanket, an equipment which blows warm air, was brought in to prevent K from losing too much heat during the process (I love that name! Sounds like a furry teddy bear hugging K when it is switched on and keeping her safe and cosy in that big bed). The staff went in and out of her room numerous times, adjusting the equipment around K and tweaking the medications K was receiving. They performed constant checks and maintained the ECMO circuit. They talked to K in a loving way like she was their own. They were also so compassionate to our grieving hearts in their small ways - bringing a chair to let us rest while we kept K company, asking us if we had our meal, and updating us of K's progress every day without fail. Seeing the familiar doctors and nurses around her room gave us a confidence booster, and definitely helped us to have more faith and assurance of her recovery. We can never thank each of you enough!
K stabilised and progressed positively throughout the ECMO process. There was more life to her body after a week of ECMO. We even spotted her peeping at us through her half-open eyes for a short while. ECMO for her was so successful that when the doctors wanted to stop ECMO for her on the 9th day, I actually asked "Really? Are you sure?" because I didn't want to rock the boat. K was successfully weaned off from the ECMO machine and responded well to post-ECMO treatment. No complications met, except that she required kidney dialysis longer than expected. Though we feared that she had to be put on kidney dialysis after her recovery from PICU, God was merciful and she didn't have to.
Trusting the medical team and leaning on support from everyone helped us tide through this stressful period. Praying for her on my own, as a family and as a church, tripled that peace in our hearts many times more. You may have stopped here because you are looking for positive stories of ECMO patients, or you may have a child who needs ECMO soon. By sharing K's story here, it is my wish that this ECMO warrior has brought hope and encouragement to at least one of you. As her earthly parents, we pray that she will never have to go through this painful path again, but if she had to, we know that God will always be watching over her and giving her what is best. Despite the physical challenges she faced, our princess warrior won the battle through the God's love, and through the help from loving people He sent into our lives.
It happened on 3rd of Feb this year - the fourth day of the Chinese New Year celebrations. The usual festive celebrations and visits to our relatives were replaced by camps at the paediatric ICU as K had a severe bout of respiratory infection (bronchiolities followed by pneumonia) due to the metapneumovirus. By the third day of admission, she had regressed so much that the doctors had to intubate her to support her breathing. Even then, she did not do well. Doctors had to increase her oxygen and nitrous oxide gases, as well as the pressures from the ventilator. She had to receive a blood transfusion, which unfortunately, triggered some reactions in her body and made the situation worse. It probably caused some kidney damage, resulting in the need for kidney dialysis. Thankfully, this was just a temporary treatment.
On the fifth day of admission, Dr Terence broke the news that I was dreading to hear. K had worsened so much that she had to be put on ECMO (Extracorporeal Membrane Oxygenation) and that was her only hope of survival. Dr Terence has always been very encouraging and positive in how he handles K's case, and though his words came out with love and concern, they cut through my heart.
If she were my child, he said, I would let her do this.
I started crying. Very badly. It was one thing to know that my child had to go through this high-risk treatment, it was another thing to realize that she was dying. I must have looked very "unglam" at that time, but I couldn't care less.
What is ECMO then? ECMO is a heart and lung bypass machine that takes over the functions of the heart and lungs so that the organs get to rest and heal over time. Two cannulas (tubes) are inserted into the right side of the neck to allow blood to be drawn from the body into the ECMO circuit and back to the body (note: there are other ways of administering ECMO). This treatment is administered to patients as a last resort when all other treatments fail to improve the condition. K almost needed ECMO when she was first hospitalised and diagnosed with pulmonary hypertension in 2013, but she managed to pull through before that happened. So naturally, we (ZY and I) associated ECMO with dying and wanted to avoid it. It also comes with high risks that will lead to many complications - even death. For example, there could be bleeding in the body due to Heparin (an anti-clotting medicine) which thins the blood to prevent blood clots in the ECMO circuit. If bleeding occurs in the brain, it can cause brain damage or death. There is also increased risk of infection, as blood is exposed to the outside environment of the body. A stroke may occur if blood clots form in the body. The ECMO process works by having an intricate balance of all the components involved to prevent any of the complications we feared. There were many children who still lost the battle despite being on ECMO. However, this scary process was the only option left to give K a chance to rest her frail body, and hopefully to be able to survive it all, else she would definitely lose her life.
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| The numerous machines supporting K during her battle |
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| The cannulas that bring blood to the ECMO machine and back to K |
During the 9 days of ECMO, the (big) team of doctors, nurses and respiratory therapists were vigilant in their care for K. There were so many doctors involved in K's case and they met up every morning to check on her and to discuss the next course of treatment as a team. The team constantly monitored her vital signs and watched for signs of discomfort. The Bair Hugger Blanket, an equipment which blows warm air, was brought in to prevent K from losing too much heat during the process (I love that name! Sounds like a furry teddy bear hugging K when it is switched on and keeping her safe and cosy in that big bed). The staff went in and out of her room numerous times, adjusting the equipment around K and tweaking the medications K was receiving. They performed constant checks and maintained the ECMO circuit. They talked to K in a loving way like she was their own. They were also so compassionate to our grieving hearts in their small ways - bringing a chair to let us rest while we kept K company, asking us if we had our meal, and updating us of K's progress every day without fail. Seeing the familiar doctors and nurses around her room gave us a confidence booster, and definitely helped us to have more faith and assurance of her recovery. We can never thank each of you enough!
The constant worry over the 9 days of ECMO was stressful and tiring. We worried about the potential complications and the quality of her life after ECMO. Though we could not help much in terms of the medical aspect, we sat beside K and held her small, lifeless hand every day. We had to be careful not to move her body else the cannulas could be shifted out of place and that would be disastrous. We sang to her and played her favourite playlist on our phones to calm and comfort her, but watching the monitor closely else she was too conscious and that would affect her vital signs. We wanted her to know that God was watching over her, and petitioned for God to be merciful to this precious soul and to heal her body. We also asked for God's blessings to be upon each member of the medical team so that they have the wisdom to decide on the most appropriate treatment for her. We prayed for the best outcome, but were also mentally ready for the worst that could possibly come.
Whenever K was hospitalised at the PICU, the sister - sweet Ch who has a tender heart for K - would rally the brother and our helper to make cards for K. They could not visit her at the PICU due to the age limit for visitors, but this was their way of showering her with love from home. They would also request for prayers from the class when they attend Sunday school.
The love from supportive family members, friends and brethren was overwhelming too. We felt it all (thank you!). We are grateful for everyone's visitations to the hospital and prayers. I know many of you offered prayers for K every day. Special mention to K's godparents for initiating virtual prayer sessions so that brethren from different parts of the world could gather together and petition for K at the same time. And a big thank you to the FB group of parents who went through similar experiences! Your advice and words of encouragement helped to allay our fears and kept us focussed on K's recovery instead of allowing our minds to wander into the scary unknowns.
K stabilised and progressed positively throughout the ECMO process. There was more life to her body after a week of ECMO. We even spotted her peeping at us through her half-open eyes for a short while. ECMO for her was so successful that when the doctors wanted to stop ECMO for her on the 9th day, I actually asked "Really? Are you sure?" because I didn't want to rock the boat. K was successfully weaned off from the ECMO machine and responded well to post-ECMO treatment. No complications met, except that she required kidney dialysis longer than expected. Though we feared that she had to be put on kidney dialysis after her recovery from PICU, God was merciful and she didn't have to.
Trusting the medical team and leaning on support from everyone helped us tide through this stressful period. Praying for her on my own, as a family and as a church, tripled that peace in our hearts many times more. You may have stopped here because you are looking for positive stories of ECMO patients, or you may have a child who needs ECMO soon. By sharing K's story here, it is my wish that this ECMO warrior has brought hope and encouragement to at least one of you. As her earthly parents, we pray that she will never have to go through this painful path again, but if she had to, we know that God will always be watching over her and giving her what is best. Despite the physical challenges she faced, our princess warrior won the battle through the God's love, and through the help from loving people He sent into our lives.
To God be the glory, great things He hath done!
