Guest contributor:
Nur Ilyana

(When Mary invited me to write on her blog, my mind raced at 150 km/h. My writing bug has come alive, after years of being suppressed! I was itching to write! I was thinking of all the topics that I could write about, pertaining to Down Syndrome. I was excited, to say the least. Literally minutes after the invite, I immediately penned down my draft.)

Before I dive into the topic at hand, allow me to give you a brief backstory. (Disclaimer: the word ‘brief’ is used loosely here, hehe)

My two elder kids, Adrianna and Aniq, are typically-developing children. They’re the most awesome siblings to Alyssa, my youngest. She has Trisomy 21, which is commonly known as Down Syndrome. I only knew of her condition when she was born, more than seven years ago. From December 2009, my life has been painted with a myriad of colours -colours which I did not even know existed. To say that it has been a roller-coaster ride is an understatement.



Before becoming a SAHM, I was an education officer. The passion started off with relief teaching when I realised that engineering wasn’t my forte. Then in 1999, I served my six months of contract teaching, and then to NIE, after which I became a full-fledged teacher. Fast forward to 2010, when Alyssa was several months old, I decided that everything was too much for me. I left the service, and have been a teacher for my school of three ever since. :)

I believe that everything happens for a reason. And I believe that all my years as an education officer culminates in me being able to understand how a child’s mind works, and have a relatively good grasp of the basics to teach Alyssa.

It has not been easy, I must admit. I was initially struggling to cope with reality, with my emotions, with society’s perceptions, all at once. They say when it rains, it pours. And oh boy, did it pour! Unknown to me, a storm was coming my way. The weather quickly started to change for me. Sunshine was replaced with dark skies. And one of the biggest pills I had to swallow was the stigma of not being like any Tom, Dick or Harry. Society’s perception of being ‘different’ was harrowing. Back then, I used to notice every single look that people were giving her. I became paranoid and got so worked up every time someone stared at her. I remember feeling like giving them a piece of my mind, every time it happened. I used to cry my eyes out behind closed doors, almost every single day. 

Lessons on having a strong Support system

Thankfully, over the years, with my strong support system, I was able to change my outlook on life as a whole. I got over the denial, the grief and became stronger, in every sense of the word. Never can stress enough how pertinent a strong support system is. I’ve got a wonderful husband who quietly supports every move I make. Him just being there for me, is all that I can ask for. My family members rally around me, giving me moral support and words of encouragement. Their smiles give me much hope for the bleak future I used to think Alyssa would have. Friends, they come and go. I must admit, it’s through this testing period that you know the true meaning of friendship. As a staunch believer of ‘everything happens for a reason’, I know that those who left have imprinted their footprints and made a difference in my life, one way or another. When one leaves this weary heart of mine, another enters. I’ve made wonderful new friends. People who walk the same scenic route as me. And as a bonus, I’ve managed to rekindle old friendships -something which I think would never have happened if Alyssa had never come into the picture. Cause it’s with her existence that old friends start to reconnect (via Facebook and Instagram) and offer their words of support.

Lessons on Humanity

Over a span of seven years, I’ve begun to view people in a different light. As I ignored the stares, my focus shifted to the more positive side of humanity. I see more people smiling at Alyssa and me. They smile with such kind eyes that made me change my whole focal point. I paid more attention to those smiles and less on the stares. I remember asking myself what have I been doing all these while, concentrating on the negatives? I slowly gained my confidence, smiling back, and at times, striking conversations with total strangers. #faithinhumanityrestored

Lessons on Ability

Back when Alyssa was just a few months old, I started reading up on what Down Syndrome was all about. That was a big mistake. As I researched more into it, I got more and more depressed. It snowballed to a point where I gave up and saw no hope in her future. I must say that the books that I’ve found in our libraries were not much of a help to shed positive light onto this condition that I knew nought of. All I read was what people with Down Syndrome could not do, what kind of medical conditions and complications they can develop and the most depressing of all, the short lives that they will lead. I immediately stopped. I focused on Alyssa’s developments. Trying hard to forget the pessimistic views that were at the back of my mind, I started to care for her, like how I did for my first two children but paying more attention to her delayed developmental areas. 

As she grew, I noticed that taking care of her wasn’t that much different from how I took care of her elder siblings. I distinctly remember the first time I saw the potential in her. It was when she was four months old. The books that I’ve read all told me how she will have low muscle tone, how she was gonna be floppy, her neck muscles are not going to be strong, etc. To me, she defied the odds, when at four months, during tummy time, she could hold her head up for a long period of time. Her eyes were bright and alert. At that moment, I decided to ignore all the inane information, and instead, devote my time and energy to give her the education she deserves.



A more recent ‘WOW’ moment Alyssa had was just a week ago. From being able to spell two- and three-letter words back in K1 and K2, my heart was filled with so much joy and pride for my little girl when she started spelling words like ‘nightmare’ and ‘quiet’, and also phrases like ‘foot of the bed’ and ‘as soon as’. Even the mistakes she made were minor -missing only a letter or two. What was more impressive was the fact that she had only practised the ten words and phrases just two days before her spelling exercise. I had underestimated her and she has proven me wrong, yet again.

This has spurred me on to continue teaching her and imparting as much knowledge as I can to her, because I know she’s learning all that is being taught to her. Though she might not regurgitate immediately, she’s absorbing the information, keeping it for another ‘wow’ moment in the future. *wink*

The bottom line is, do not let anything or anyone confine you to what you are able to do. Your ability is a combination of nature and nurture. It’s what you’re born with. And nurturing that innate ability will help hone it even further.

Lessons on Being Positive 

When things happen, especially when things I plan do not go my way, I take it as a sign that it’s for the better. Or that it has been replaced by something even better. I refuse to take it as a setback. Instead, I change it to an opportunity. A learning point, if it concerns me. And a teaching point, if it involves the kids. It is so much better to view it as such because mulling and complaining over something which is out of your hands is so very draining. It drains you of your energy and your capacity to move on. If it rains on your parade, just open your brolly and continue walking. Your clothes might get wet, but hey, standing in the rain won’t help, will it? Before you know it, the sun’s come out and the rainbow you’ve been waiting for is there, just for you!

I’m thankful to Alyssa for this journey which has its stops and starts. Without her, I would not have been able to re-look my view on life and be forever thinking that we have to be the best, the first at everything. We must be fast. We must climb to the top. Everyone is in it to win it.

Everything has changed for me. It’s such a beautiful world that Alyssa has shown me. 

You don’t need to be the best to be happy. You don’t have to be fast to be numero uno. You don’t have to win at everything. Be content. Be grateful. Be HAPPY. :)

Ilyana is a mother of three: a “newborn-mother” of a teenager, a soon-to-be “tween” and a primary-one-going child. The three children are her light, her heart and her soul. Seeing them grow and become the person each of them is now and will be, is a wondrous process for her. Connect with Ilyana on Facebook or Email.

And poo? Well, it’s just poo.

About Cheng-E
The overgrown kid of the family, an architect by day and author by night. Cheng-E also maintains a family blog and writes for the online magazine Special Seeds.

October is Down Syndrome Awareness Month in America. Riding on their campaign, I'm doing my part over here to raise awareness and spread some love for people with Down syndrome, one story at a time. For this special month, I invite you to hear from my friends in the Down syndrome community in Singapore. Today, we have Monika on the blog to share her son's story. 

Guest contributor:
Monika Anderegg

Together with my growing womb, dreams and expectations of my unborn child had been growing. I knew we were expecting a boy and in my imagination, I saw him playing soccer, protecting his older sisters, being smart, playful, naughty, funny, tall and strong and at the same time, gentle and charming. The world would be colourful and welcoming to him - anything seemed to be possible. 



With the diagnosis of Down Syndrome, it felt as if this huge and colourful world would shrink to a small, hard, unfriendly dark point and instead of "anything is possible", obstacles would plaster Nicolas' life journey. The curiosity behind questions faded away. Many options seemed to be reduced to finding at least one solution. There was no more “What would he become later in life?”, “Would he fall in love, get married and have children?”. No more happy questions, only sad things like “no” or “not possible” were in my mind and in my heart. 

It didn’t help that the hospital handed me an A4-sized document together with the confirmation of Down Syndrome. The list of additional conditions and diseases a child born with Down Syndrome might be prone to, ran two pages long with words in font size 8. 

Many weeks later, a family reached out to me. Their eldest daughter, who was a young teenager then, has Down Syndrome too. The family is very active - doing sports, travelling, and loves outdoor activities. They told me that they have never felt limited by their daughter's condition. She would come along wherever they went and participate in all activities. I guess that was the point when I started to rethink about our journey with Down syndrome and decided to focus on what my son was able to do, on his talents, on his preferences and to give him our utmost support instead of counting milestones and checking whether he would achieve them according to given developmental timelines. 

I also felt that we received very positive responses with friends who were surprisingly supportive. Friends would sit with him to paint and read stories together. They sang with him, carried him on their shoulders through events, and helped me open up and feel comfortable when we brought Nicolas out for gatherings.

I always was, and still am, touched when I observe with how much love and joy my daughters treat Nicolas. I can’t deny my fear of his future, disturbingly funny looks of people I don’t know yet, painful questions asked, but I try to give these worries very limited space in my heart. Instead, I remind myself to value the positive feelings, friendly looks and open questions of people who really want to learn more about people born with Down Syndrome. 

Nicolas featured on Impulse magazine (October 2017) for Therapeutic Riding lessons with THERIS

I have a new dream for my son. 

I see him opening the hearts of people and helping, in his special way, to build a base where everything is possible and to unite people with different stories, conditions, preferences, talents, speed and much more. Life is not an unfriendly dark point. It is colourful and full of surprises; everybody deserves the chance to pick them up in his or her own way and pace.

Life is not an unfriendly dark point. It is colourful and full of surprises; everybody deserves the chance to pick them up in his or her own way and pace. - Monika, mom of Nicolas

About Monika
Monika is a mom of three. Her youngest son Nicolas was born with Down Syndrome. She is a Singapore PR and works as a German teacher. Her family is very active, loves to do sports and spends a lot of time out in nature. 

Have you seen this short film that has been viewed 5,368,555 times on Facebook (data was taken on 21 Mar 2017 at 10:02 am my timezone)? The hilarious cover of a cat on a man's back with the words "A cat massage?" caught my attention after a few friends tagged me on Facebook. Watch it if you have not.


It is one of the best short films I've seen lately - humorous, yet brings across a much-needed message by people with Down syndrome. "Not Special Needs" is an international campaign initiated by CoorDown - National Coordination of Associations of People with Down syndrome for the World Down Syndrome Day and I think they nailed the message.

What special needs does someone with Down syndrome really have?

Looking at K who will turn 6 years old this year, I sometimes forget that she has a disability. She has needs just like Ch and L, and every other child I have hugged and kissed and loved. She needs to eat, drink, rest and breathe. She needs to love and be loved, to communicate, to move, to be educated and to have a safe place called home.

Of course, if you ask her about her needs, she'll probably tell you she needs to watch TV and play "cooking". Every day.

Sure, she does require extra assistance from time to time - like a feeding tube when she could not swallow her food safely and wasn't eating enough to sustain her growth - or an oxygen concentrator to provide sufficient oxygen for her to live when her lungs were healing from the three pneumonia infections - or even the numerous therapies to help her learn better and grow in the cognition, physical, social and emotional aspects.

Aren't these merely different ways of meeting her fundamental human needs?

It is time to recognise people with disabilities, including Down syndrome, as equal siblings in our family of human diversity - as people with the same rights and same fundamental human needs as everyone else, even if they may require extra assistance or a different way of meeting a particular human need. - www.notspecialneeds.com

If we can see the needs of people with disabilities as just human needs, we will be able to see beyond the condescending labels that have been freely slapped onto them by the society.

If we can see their needs as just human needs, many babies who are born with disabilities will not be abandoned in the hospitals - unclaimed and unloved.

If we can see their needs as just human needs, we will be able to see people with disabilities as just, people.


Not special needs. Just human needs.

As people with the same rights and access to all that we enjoy too.

*March 21st is World Down Syndrome Day. A day where people with Down syndrome and friends who care about them come together as one voice to raise awareness of Down syndrome.

When your newborn child is diagnosed with Down Syndrome, who do you turn to for support and advice?

Thinking back, I was glad that K's paediatrician remembered to inform us of the Down Syndrome Association (DSA) here. Because many good things came out of that call to DSA. 

From that call, DSA helped me to connect with one of the best paediatricians who is well-known among the local Down Syndrome community. I was assigned a parent mentor who brought hope and love when she knocked on my door during my postnatal confinement. She came with her son, Alan who also has Down Syndrome, and he amazed me with his eloquent speech (at that time, I had that misconception that all people with Down Syndrome couldn't talk and had slurred speech). A gathering for new parents brought many of us together, and friendship blossomed till today. I was also introduced to many parenting talks held at DSA, and picked up good tips from the speakers and other parents. 

DSA is a self-funded, non-profit Voluntary Welfare Organisation (VWO) that was set up in 1995 by a group of parents who have children with Down Syndrome. The Association works closely and regularly with healthcare and educational professionals, as well as other VWO, and aims to:

• develop individuals with Down Syndrome through life-long learning and social integration
• support families through specialist services, information and education
• advocate for equal opportunities, quality of life and their contribution to the society

This year, DSA celebrates 20 good years of empowering the differently abled and their families through various family support programs they provide. The 20th Anniversary celebrations will kickstart with a Kite Flying & Family Carnival!

Date: 27th February 2016, Saturday
Time:11am - 8pm
Venue: Grand Lawn of Bishan-Ang Mo Kio Park. 

This event is open to public and DSA attempts to create the record of the largest human kite formation on the Singapore Book of Records!

What to expect
A mini carnival with food and games to entertain the young and old. Carnival coupons (which come in sets of $10) are available for purchase to buy food and play the games (Uncle Ringo, bouncing castle and other games stalls). A free gift (while stocks last!) will be given for every carnival coupon purchased. Enjoy food by Old Chang Kee and talented home chefs from SgEatWithUs. Halal food will also be available at some of the food stalls. 

There are other activities happening alongside with the carnival - Kite Making workshop and Kite Coloring contest (with prizes!) by Singapore Kite Association, community performances and stage performances by the members of DSA. Registration for the Kite Making workshop and Kite Coloring contest is free, but do register early with DSA as there are limited slots. 

Take the whole afternoon to laze around at the Grand Lawn and pit your kite flying skills with your friends and family. 

And nearer the evening, have a picnic with your loved ones while enjoying the spectacular display of LED kite flying showcase under the stars. 

Record-breaking moment
Be a part of the largest human kite formation to help DSA enter the Singapore Book of Records! This will take place around 3pm and the friendly volunteers will be around to usher the crowd for the formation. Just be ready and pose for the record-breaking moment!

What you will receive
For DSA members, each participating member with Down Syndrome and one caregiver will receive a free event t-shirt if you register for the event. 

Free kites will be given every hour (while stocks last!) to those who join the kite flying activity. You can also bring along your own kites. 

Where to get the carnival coupons
Carnival coupons will be available for purchase from the first week of February. Do contact DSA to make your purchase or head down to the coupon sales booth on the event day to get some. 

How to register
Registration for the following events is preferred and appreciated:

• Kite Making workshop  
• Kite Coloring contest 
• Human Kite Formation for the Singapore Book of Records (opens until 3pm of the event day)

Contact Andrew (andrew@downsyndrome-singapore.org) or Lynette (lynette@downsyndrome-singapore.org). Alternatively, call DSA at 65009309 by 15 February. 


For DSA members, do check your email for more info.





Will you be there to show your support for someone who has Down Syndrome? If you do not know anyone who has Down Syndrome, your mere presence and participation will still greatly encourage the families in the community too! 

March 21 is World Down Syndrome Day.

Today, the Down Syndrome Association of Singapore is organising a carnival and a buddy walk along Orchard Road in support of all persons with Down Syndrome. 

I wouldn't have known about this day - a day that is celebrated around the world to promote acceptance and awareness of individuals with Down Syndrome to the public, as well as celebrate the lives of those with Down Syndrome - if I hadn't had one of my own with Down Syndrome.

Although we can't be present to soak in today's fun and to join the buddy walk, donning our colourful socks, we will remember this day in our own way by sharing a day in the life of our princess warrior. 

Every day is quite a routine for K as she hardly leaves the house, except to go for her medical check-up or therapies. It is not that she can't, but rather, we want to keep her away from the crowd to prevent her from catching a bug. And with her cumbersome oxygen concentrator and feeding pump that comes together with the tall IV pole, things can get a little tricky when she goes out. She is constantly hooked up to these two machines to help her lungs work more easily to get oxygen, and to prevent any swallowing dysfunction from oral feeding. These are her homecare treatment after three episodes of lung infections that almost took her life. That is also why she has stopped attending early intervention programs at Fei Yue EIPIC and her favourite Sunday School classes. You can read more about what happened here and here. 

A day in the life of K starts with the morning. We would find her sitting up and playing happily on the bed once she wakes. And she does that signature pose of hers to tame her messy morning hair which never fails to make us smile (see video below). 

After getting help to wash up and change out of her pyjamas, she points to the door and says "dooor dooor" to tell us that she wants to leave the bedroom. And when she is in the playful mood, she roars like a lion while crawling. 

Watching Hi-5 or Baby Signing Time are her favourite morning activities and she will always get her spot on the sofa. She dances and moves just like the cast of Hi-5, and signs and sings along with Rachel in Baby Signing Time. 

She displays high awareness of her surrounding and looks for the TV remote control to switch off the TV after the show ends. Sometimes she misses the green on-off button and lands in another channel, earning herself some bonus TV time until I realise. 

She then gets her daily puffs of Flixotide - a medicine to help her lungs - twice a day. I sneak in some counting time with her, and we count slowly from 1 to 20. She follows and counts with me, and removes her spacer with a grin when we reach 20. Then she helps to keep the items in a bag.



The rest of the morning will be spent doing her physiotherapy, or occupational therapy either at the medical centre or by yours truly. All these come in the form of games and fun, but sometimes, she just says "nooooo" to the activity I suggest. She does have a mind of her own too. 



K takes an afternoon nap on my bed. She is at this phase where she resists sleep and says "noooo" whenever I ask if she is tired. I love watching K when she sleeps, even if she looks unglamorous.



After the nap, K continues to enjoy the day with more constructive play either with her siblings or on her own. She loves playing with her soft toys and feeding them imaginary food. She calls her soft toys by their names in an endearing voice. There is "Beby", "Boo Boo", "Bear Bear", "A-bit" (Rabbit), "O-uuu" (Olaf), and "Poo" (Hippo). 

She loves being surrounded by books too. Haha!





She loves our phones and iPads, and is very quick to grab them when no one is looking. Then she disables our phones with her numerous attempts to unlock the devices. 



But most of all, K loves posing for the camera and making us laugh, because she knows she is adorable. Her chuckles are hilarious and it's without a doubt that you will laugh along with her. She showers us with her hugs and kisses. The PICU staff can definitely attest to that. 



When dinner-time comes, she sits with us at the table. She doesn't really eat by mouth, as she has not been certified to eat safely by the therapists. But she joins in the conversation and pretends to feed herself after asking for her "boo" (bowl) and "poon" (spoon). 

You asked what the future holds for her? Echoing Dr Forrest C. Shaklee's words, 

"The best way to predict the future is to create it."

That is why we, her guardian angels on earth, are here to guide her and support her each day to learn the life-skills she needs in the future. 

Wherever, whenever.

That is why we, her guardian angels on earth, are writing this post to heighten the awareness of people with Down Syndrome in our society and create a better world for K to live in - a world where differently abled individuals are socially accepted and given equal rights in education, healthcare and job opportunities. There is a lot of potential in every individual with Down Syndrome, like a pearl waiting to be discovered and polished.



The intent of this post is not to gain pity or sympathy, but rather, to encourage you to celebrate your life just like how we are celebrating K's today. More importantly, to face your challenges with a strong will-power and positive attitude like K did. She wouldn't be able to reach where she is today if not for her will-power to survive. There will be many more challenges she has to face - her cognitive and speech development, her feeding etc - but if she faces all these positively like she has done before, I am confident she will triumph over them. 

And of course, her Heavenly Father is always with her. 

If you have been touched by K's story, may I request that you perform an act of kindness today (like writing a letter of appreciation to someone or send a meal to a friend) to spread a little love in the name of Down Syndrome. You can also take pictures of your kind act and post on your social media pages with the hashtag #WDSD15. Let's celebrate World Down Syndrome Day together!

*This post is part of the series "A Day in the Life" that is a celebration of World Down Syndrome Day. To read other posts on "A Day in the Life", or to contribute your own post, please visit 

Ever since K's two pneumonia infections which landed her critically ill at the pediatric ICU this year, we hardly bring her out now, except to her doctor's appointments at the hospital. We even stopped all her therapies and early intervention program as more exposure out of house would mean a higher risk of getting a bug, and possibly another medical crisis for her.

This means she spends most of her time at home.



Games are one of the best ways of learning for a child, and it is true for K too. Games Nights are precious family time for us, as we love the interaction and family bonding while playing a game together. We also see the character of the kids through playing games and how they strategize to win. Naturally, I want to start K on a simple board game so that she can catch on the games-playing bug in the future.

Pamela from My First Games (a local mumpreneur who is passionate about board and card games and owns an online store of fantastic games suitable for families) introduced Go Away Monster to us a few years ago. This is a simple board game which even a two year old can understand the game play. It is fun and enjoyable to see how the little ones become so engrossed in the game.


About the game

Number of players:    2 to 4 players

Suggested age:           3 and above (publisher's suggestion)

Playing time:             10 minutes

How the game is played:

Each player reaches into the monster bag and draws out a puzzle piece to place on his bedroom game board. Older kids learn to strategize by feeling the shape and size of the furniture puzzle piece they want inside the bag. This also heightens their tactile perception and stimulates the brain function when they "look" for things with their fingers. When the player draws out a monster piece, he shoos it away and the game continues with the next player. The first player to complete his bedroom game board wins. 



As I mentioned, the rules are simple enough for K to understand after one round of the game. She waits patiently for us to prompt her when it is her turn. Sometimes she has difficulty pulling out just one puzzle piece, so we try and help her a little when that happens. The interaction she has with us is immense as she uses her facial expression, babbles, hand signs and words to tell us that she enjoys the game. I'm happy with her progress, for she figured out where to place the teddy bear, bed and lamp on the game board today! A developmental milestone reached!



Go Away Monster encourages cooperative play too. K learns to give her puzzle piece to help complete our game board when she already has the same one on hers.

What is the best part of this game? It's seeing how K recognises the monsters pieces and shoos them away when we all shout "Go away, Monster!". She rewards us with her contagious smile and helps us throw the monster piece away. My heart just melts away when she does that.
My First Games does not carry this game now, but you can get Go Away Monster here (affiliate link attached). Unfortunately, this game is already out of print. My First Games carries many other fun and educational games, and I'll be looking out for more games for K! 
 

October is Down Syndrome (DS) Awareness Month in the United States, and I just want to take this opportunity to mention it here today. I am a part of a support group of parents who have children with DS. This group is amazing as we have a mentee-mentor relationship where the mentee is a new parent with a newborn with DS. Even though we hardly know each other, we bond through conversations about our little ones with DS and our other children too. So, a friend was wondering why there have been less mentees lately. The explanation she was given was that there have been less referrals from hospitals and that could be due to more abortions of unhealthy foetuses. This info is not yet verified, but oh, I felt so sad when I heard it. I am praying for all those foetuses that this is not true! And for all the parents whose foetuses are suspected to have DS, I pray that you will have faith and carry on your pregnancy!

Dear Friend, if you have reached this post because:

you were searching for more info on parenting a child with Down Syndrome, 

you are looking for a support group for parents of children with Down Syndrome in Singapore, 

you need some hope and encouragement in your parenting journey of your child with Down Syndrome, 

these are a few of the support groups (that I know of) that you can join in Singapore:

1. Down Syndrome Association of Singapore - DSA aims to provide support to families and caregivers, help a person with Down Syndrome to lead a normal life and contribute to the society, and help integrate a person with Down Syndrome into mainstream society. You can also visit their Facebook page. 

2. Singapore for Down Syndrome, a closed group on Facebook - This is a FB closed group for parents of children with Down Syndrome in Singapore. Please email Grace at squirrelwee@gmail.com if you wish to join the group.

3. a close-knitted Whatsapp group chat for Mommies of children with Down Syndrome - Entry to this group is by invitation and recommendation. You can email me at simplylambchops@gmail.com to find out more.

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. 

The numerous machines supporting K during her battle

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! 



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.