One-year-old with advanced heart failure hopes for transplant
Father of baby who needs machine to keep his heart beating hopes for a transplant
Aiden Chew turns one on Thursday.
That he is still alive makes it a precious milestone.
Aiden's heart has stopped working. He is being kept alive by a machine that helps his heart to keep beating.
His condition is the result of a complication from Kawasaki Disease, which leads to inflammation of the small- and medium-sized blood vessels throughout the body.
It was a huge blow to his parents. Initially, Mrs Marie Chew, who is in her 30s, found herself thinking: "I wish it happened to someone else, not me."
Mrs Chew, who left her job in human resources last Friday to care for Aiden, said: "I have many things planned for him - childcare, enrichment classes, even enrolled him in swimming.
"I even planned when he would go for photo shoots, and all the packages are bought already."
Aiden is her only child.
"Of course I'm disappointed but compared to now with him being with us, this disappointment is nothing."
Speaking to The New Paper last Friday, Mrs Chew and her husband Jeremy, 34, said their emotional turmoil began in May, when Aiden was diagnosed with Kawasaki Disease.
He had a persistent fever that went away with steroids. But week after week, the baby would have to be taken back to KK Women's and Children's Hospital (KKH)after suffering a relapse.
Each check-up after admission revealed coronary aneurysms, when part of the artery that sends blood to the heart dilates abnormally. Depending on the size, the aneurysm can block blood flow to the heart or rupture. Either outcome could be deadly.
In Aiden's case, the aneurysms dilated the vessels more than four times their original diameters.
Mrs Chew said softly: "We knew that it may cause a heart attack but we didn't think that it would happen."
At about 4am one day in June, baby Aiden woke up screaming and was crying uncontrollably. After close to two hours, his parents decided to take him to KKH for a scan.
At the hospital's Accident & Emergency department, he seemed to "black out" for a brief second, said Mr Chew.
He was rushed to the intensive care unit but on the way there, Aiden suddenly became still and silent.
He had a massive heart attack.
Mrs Chew said: "It was very scary. He froze in my arms. All of a sudden, he stopped moving. I put him down, and that was when they performed CPR (cardiopulmonary resuscitation) at the lift landing."
Mr Chew added: "It was traumatising. Aiden's eyes rolled back (after he blacked out the second time). He was so still and his whole body turned white.
"He didn't make it to the operating theatre. The doctors vacated the ward and spent 1½ hours trying to revive Aiden in a room."
Mrs Chew said she only fully grasped what had happened after the doctors spoke to her and husband.
"(My husband) signed the forms. My mind was a blank. I was wondering what was taking them so long."
After what seemed like an eternity, their son was finally wheeled out.
What they saw broke their hearts.
Their cherubic baby, who was unconscious, had tubes inserted into his body.
He was hooked to three different machines: an extra-corporeal membrane oxygenator (Ecmo), a respiratory system and kidney dialysis machine.
They were told by doctors that the heart attack was massive even by an adult's standard, and had left Aiden with a broken heart, collapsed lungs and kidney damage. The Ecmo takes over the patient's heart and lung functions.
Mr Chew, who works in IT security, and his wife cried.
Showing us pictures of Aiden smiling a few days before the heart attack, Mrs Chew added: "When he was at the lift and had a heart attack, he was still a normal boy to us. When we got to see him again after the resuscitation, he was completely different.
"He came out with all the tubes and there were bruises on his body. So that's how hard they must have performed the CPR."
The couple also had to watch as their son bled from his nose and mouth, a complication from being on Ecmo.
At the back of their minds were the doctors' grave words: If need be, you need to learn how to let go and just pull the plug.
Mrs Chew refused to believe Aiden would not pull through.
"In my mind, I was thinking (the doctors) were talking nonsense. One of them even told us to prepare a priest, as we are Catholics. I was hopeful but I don't think my husband was," she said.
Mr Chew explained that he had to consider carefully their options and "look at the full picture".
"The doctor painted us a very bleak picture. Even if he survived, he will suffer a lot," he said, adding that Aiden would have to transfer from machine to machine to keep his heart pumping.
It was very scary. He froze in my arms. All of a sudden, he stopped moving.
- Mrs Marie Chew on the moment when Aiden had a heart attack
SURGERY FOR A 'NEW' HEART
Aiden's recovery has been slow. He was converted to the CentriMag, a temporary device that helps the heart pump oxygenated blood throughout the body.
He is scheduled for a Berlin Heart operation in 1½ months at KK Women's and Children's Hospital, a first in Singapore.
A Berlin Heart is a long-term heart pump that helps children with severe heart failure buy time while waiting for a heart donor. (See infographic, below.)
SOURCE: ANN & ROBERT H. LURIE CHILDREN’S HOSPITAL OF CHICAGO
In some cases, patients recover enough to come off the device and maintain blood flow on their own, something Mrs Chew is hoping for.
Otherwise, Aiden can only survive with a heart transplant.
But this is a dim prospect because he is not covered under the Human Organ Transplant Act (Hota). This means there is no waiting list for children who need organ transplants.
The baby is only covered under the Medical (Therapy, Education and Research) Act (MTERA), an opt-in programme which allows an adult next-of-kin to pledge the organs of a dead or dying patient of any age for donation.
"I hope people will come to know that there is this option to give the gift of life," Mr Chew said, hoping to raise awareness of infant organ donation.
Yet, he knows it will be an uphill task.
"The moment you say you consent to the donation of your child's organs, the outcome is that your child will not come out from the operating theatre alive.
"We've seen many parents whose children passed on. Some of them hug their children for close to four hours. It's very, very hard for them," Mr Chew said.
It has been close to four months of uncertainty but the couple are determined to fight - with or without a transplant.
"Every time we see him smiling, it's comforting to us. He has regained a lot of his cheerfulness," said Mrs Chew.
"We just take one step at a time. We see him not with the machine but as a normal baby."
What is Kawasaki Disease?
Kawasaki Disease (KD) is a childhood illness that causes inflammation of the small- and medium-sized blood vessels throughout the body.
Quoting a joint study by the National University Hospital (NUH) and KK Women's and Children's Hospital (KKH), Associate Professor Tan Teng Hong said the prevalence of KD here is estimated to be 51.4 per 100,000 children aged five and under.
Prof Tan is head and senior consultant of cardiology service in the department of paediatric sub-specialties at KKH.
He said KKH sees 120 to 150 new cases of KD every year.
With treatment, only five to six per cent of these patients develop coronary artery complications that comes with KD, said Associate Professor Quek Swee Chye, head and senior consultant at the paediatric cardiology division at NUH.
One complication is a coronary aneurysm, where an artery carrying blood to the heart is abnormally dilated.
"Depending on the size of the aneurysm, there is a risk that a thrombus (clot) may form within the aneurysm and obstruct blood flow, thereby depriving the heart muscle of oxygen.
"Aneurysms can also regress in size with time and if this is excessive, it can lead to stenosis (narrowing of the vessel) which also can compromise blood flow," Prof Quek explained.
Agreeing, Prof Tan added that patients with coronary aneurysms can also have decreased cardiac function (a weak heart), abnormal heart rhythms or sudden death.