SINGAPORE: She has been in and out of hospital at least 15 times since she was born. She has been rushed to the intensive care unit (ICU) multiple times over the past two years. She is three years old.
Xie Xinlin was born with spinal muscular atrophy, a rare genetic disease that causes muscles to weaken progressively. It is incurable.
When she falls ill with a simple cough and cold, she finds it very hard to breathe, and her body reacts severely. That is when she goes to the ICU, needing a ventilator to pump air into her lungs.
Each time, she is at risk of never returning home. What do Xinlin and her parents go through in the ICU, behind those closed doors?
For the first time, their story and that of other families can be told by Channel NewsAsia, which gained unprecedented access to Singapore’s largest children’s ICU, at the KK Women’s and Children’s Hospital (KKH).
From long, lonely waits to risky medical procedures, moments of pain, love and heartbreak – the five-part series Inside the Children’s ICU documented the children’s struggle to survive, and the work of the doctors who fought to give them the chance to grow up.
PADDLING FURIOUSLY, WITH NO ROOM FOR ERROR
For about two months, the cameras captured the team of more than 20 doctors and nurses working together to provide critical care for the children, cope with emergencies, deal with distraught parents, and try to save those on the brink of death. (Watch the first episode here.)
How did they, together with the parents, make tough decisions, including those life-and-death ones?
In the words of senior consultant Mok Yee Hui, who now heads the KKH Children’s ICU, they must remain calm above all else, “even if (their) feet are paddling furiously underwater” in the “high-intensity, dynamic (and) fast-paced environment”.
But that is easier said than done, as there is no room for mistakes.
Children’s ICU senior resident Sudipta Roy Chowdhury.
For Children’s ICU senior resident Sudipta Roy Chowdhury, it did not take long – her first week – to get called into action on a challenging case. The patient was another three-year-old, Mohd Haris Dzulkarnein, whom she had to transfer to KKH.
Haris was fine the day before he went into hospital. Then he had a fever suddenly, and overnight, he was suffocating.
He was first rushed to Changi General Hospital where his father, coincidentally, was about to undergo a heart procedure. Mr Buang Taib recalled: “I rushed down. I pulled out all my tubes. The doctors said I couldn’t go, but I said, ‘No, my son is in the emergency unit now.’”
But his son needed to be transferred to Singapore’s most advanced children’s ICU, at KKH. The hospital runs a Children Hospital Emergency Transport Service which, when activated, will send an ICU team to other hospitals to pick up children who need critical care.
Dr Chowdhury, a paediatrician-in-training, said of Haris’ case: “We thought initially it could have been due to pneumonia or some form of asthma exacerbation, because he has a history of asthma.”
But then his blood pressure also dropped, “causing his organs to start failing – his liver, his kidneys”. The medical professionals found themselves in a race against time to discover why. At one point, they were concerned his brain might get damaged.
WATCH: What does it take to work in the CICU? (4:59)
LOOKING AFTER THE PARENTS AS WELL
Situations like these are “a different ball game” from Dr Chowdhury’s previous neonatal posting, during which she dealt with premature babies.
The first week of her three-month-long clinical rotation with the Children’s ICU was “very challenging”, she said, adding: “(To) a lot of the patients here, we’re like the gatekeepers sometimes … the last line (of defence) in this hospital.”
This ICU team of doctors and nurses work round the clock to care for up to 16 critically ill children.
Unlike other nurses who have five patients, the nurses here are in charge of only one or two children each – because of the close supervision and advanced life support needed for their life-threatening conditions.
And the nurses do not tend only to the children.
Assistant nurse clinician Annabelle Zhang said: “Parents tend to be very stressed out and very anxious. We need to always be with them to provide them with reassurance.”
Within the Children’s ICU, most families are also assigned a social worker immediately to help them cope with the stress of having their child admitted.
Dr Mok said: “We can’t take away the fact that their loved ones are critically ill. But our team does understand that this is very overwhelming.
So we try very hard to support the families and the patients, and try to make it as positive an experience … as possible.
Sometimes that is as much a challenge as the search for answers to the medical problems.
As the team investigated the cause of Haris’ failing health, his father was at the bedside of his unresponsive son, lamenting to himself: “Why not me? Why my son?”
NO EASY DECISIONS
Haris’ case is not the kind usually seen in the ICU. Many of its children are those who return frequently to the hospital – such as Aulia Sofea Arwin, who was back for a medical procedure a month after being discharged.
Now three, she was diagnosed with childhood leukaemia at age two. She returned for an operation to get her central line – a tube inserted into one of her large veins, for medicine to be delivered – replaced.
An infection had contaminated the original line, and after four rounds of chemotherapy in the past year, Aulia’s immune system was vulnerable.
The ICU doctors managed to keep her bloodstream infection at bay with a cocktail of antibiotics. But before her condition could stabilise, a cut in her anus threatened to deal her another blow.
The doctors had to resolve whether to escalate intervention by creating a stoma bag to collect stools from her intestines. But that would require a major surgery – and Aulia’s parents had to decide whether to do nothing, or accept the risks of the procedure in a bid to speed up the healing process.
At one point, mother Shikin Rahman told her only child, who had spent two weeks in the ICU already: “You’ve been fighting all along, right? So you have to fight some more.”
STAYING CALM, WHEN ALL HELL BREAKS LOOSE
The decisions do not get any easier when parents defer to the doctors, for example in the case of nine-year-old Marcus.
One minute he was on a football field, the next he was in an ambulance with intense chest pains and his heart rhythm out of whack. A day after being admitted to the ICU, his blood pressure dropped drastically.
This and his erratic heartbeat were warning signs that he was in danger of multiple organ failure. “His heart function was deteriorating in front of our eyes, to a point that the heart was hardly moving,” said Dr Mok.
Five different machines are (sounding the alarm) … two nurses are calling you, one doctor is saying something … It’s challenging to remain calm and continue to function effectively when all hell breaks loose.
The doctors had to decide quickly whether to put Marcus through a high-risk procedure: Hooking him up to a heart-lung bypass machine.
Before they made the call, they spoke to his mother Sharon.
She said: “The moment (they) … told me his blood pressure has gone down, and he has to be moved to be supported by (the machine), that was already telling me that, oh my God, there’s a high chance I’d lose him.”
But the machine kept Marcus alive, pumping blood around his body. Nobody could tell, however, when or even whether his heart function would return. “There’s nothing I can do other than just pray that he’ll come back,” said his mother.
THE QUESTION OF WHEN TO LET GO
What happens, though, when a parent knows there is no cure for his child?
Mr Xie Ding Shan had brought his daughter Xinlin to the ICU a few times already. Once again, she was put on a ventilator for oxygen and a machine to help her cough out secretions such as mucus blocking her airways.
“The next flu or cough – we don’t know when she’ll get it – and she has to go through this again,” said Mr Xie. “So to me and my wife, it’s painful to see her suffer.”
They were told that Xinlin seemed to be weaker than before. The longer she was on the ventilator, the faster her muscles would deteriorate. But nobody knew if she would survive the “extubation” (being removed from the ventilator).
Mr Xie said: “In case Xinlin can’t sustain (her breathing) or this extubation isn’t successful, it may be time for us to let her go.”
There was once when a young Dr Mok would have had a strong urge to intervene on her patients’ behalf. But the hardest lesson she has learnt working in the ICU is that technology and science are finite.
“There are more things that we have no treatment for than things that we do have treatments for,” she said.
As I advance in my career, it’s about the realisation of saying when enough is enough – when any further intervention is just going to cause more harm.
Dr Chowdhury has also been learning how to better channel her emotions.
“Death is quite commonplace in our profession. Some people think we get used to it; I don’t think we get used to it. I think we just have to know how to handle it,” she said.
“You wonder if you could have done something more, of course … but I think you’ve got to have closure … You want to make sure you’re still prepared to make sure that the next patient walks away fine from the ICU.”
Senior consultant Mok Yee Hui, who now heads the KKH Children’s ICU
THE EMOTIONAL IMPACT
A different group of professionals found it difficult not to be emotionally affected: The Channel NewsAsia crew.
“I was there when they thought Xinlin was going to die. Yes, I cried while filming. I was wearing a mask, and it was wet due to my tears,” said cameraman Mohamed Haffiz Abdul Aziz.
“The family members requested the medical staff to loosen the tubes attached to her, as they wanted to carry her … They took turns carrying her in their arms, hugging and crying.”
The crew developed an attachment to the children, and some of them also gave the children presents. Mr Mohamed Haffiz, for example, bought Aulia a Minion doll wearing a Captain America outfit because she loved the Minions cartoon creatures.
He said: “Her mum created an Instagram account for her with the frequent hashtag #lilfighter. Captain America is a superhero, and on that doll, there’s a big letter A, which can also (stand for) her name.”
Producer Elrica Tanu found it a “very emotional experience” just being in the same room with the families when “difficult conversations were taking place”, let alone farewells.
BEHIND THE SCENES
The emotional roller-coaster was not the only challenge the crew faced. They also had to take care not to pass on any infections to the children and vice versa.
So, for example, they had to wipe all their equipment with alcohol wipes every time on arrival.
“Everywhere we moved around the wards, we’d always sanitise our hands,” added Mr Mohamed Haffiz “Due to the frequent contact with the hand sanitiser, the colour of my wedding ring kind of faded. But it’s okay. I’m fine with that.”
To Ms Tanu, the most important challenge was getting the patients’ parents and the medical team to talk to the crew on camera “when they obviously have bigger things on their minds”.
“It takes time and a lot of empathy to build trust and be able to obtain the kind of access we eventually had,” she said.
“I learnt a lot about resilience from these families, and I’ve a lot of respect for the dedicated medical professionals who work day and night to save lives.
“It’s hard to see a child suffer. It’s hard to see parents have to say goodbye to their child … Sometimes bad things happen to good people.”
Watch the first episode of the five-part series Inside the Children’s ICU here.
