CHARLIE Gard is no more with us. The almost 1-year-old child whose parents’ fight to allow him to live, in spite of all odds, ended on Friday when he was taken off life support after being transferred to a hospice, amid a protracted and bitter dispute that had attracted publicity and, with it, sympathy and criticisms.
Charlie was born with mitochondrial DNA depletion syndrome, a rare condition that is believed to affect only dozens of children around the world.
He was warded at the famous Great Ormond Street Hospital for Sick Children in London earlier this year. When it was decided that his condition could not be treated and that he should be allowed to die, the parents took the case to the courts in attempts to try other treatments and allow him to live. But they failed in appeal after appeal.
Their appeal to allow them one more week with their baby was rejected last Thursday. His mother fled the court in tears, screaming: “What if it is your child?”
Charlie’s harrowing case and his parents’, Chris Gard and Connie Yates, fight and struggle brought not just tears to my eyes but also memories of similar cases I had encountered.
It brought me back to the operating theatre in King’s College Hospital in south London in 1994, where I witnessed Zaini Othman being opened up and had her liver taken out for a portion to be transplanted into her then 4- year-old daughter, Nadhirah, who was born with a damaged liver.
The consultant who pioneered the operation, Datuk Dr Tan Kai Cha, beckoned me, then a budding documentary maker, over to watch how it was done. What I saw was a mother’s ultimate sacrifice to save her daughter’s life.
Once the team was done with Zaini, we waited outside the theatre and saw Zulkifli Hussein, Nadhirah’s father, carrying her, flanked by two nurses. It must have been the longest and most difficult walk Zulkifli had had to experience as he handed Nadhirah to the team waiting at the door.
Our team of camera people and soundmen burst into tears as Zul kept walking back to take Nadhirah in his arms, only to be pulled away gently by the nurses. It was one of the most heartbreaking scenes in the documentary that I made of the pioneering procedure by a Malaysian consultant on a Malaysian patient, of a living related donor transplant.
Nadhirah was born with billiary atresia, a damaged liver that caused her prolonged jaundice and a bloated tummy. She badly needed a transplant that the family could ill afford; there were more closed doors than open ones when they appealed for financial donations as it was deemed that Nadhirah’s condition could not be treated.
But Zaini was made of sterner stuff; she wouldn’t give up. A final knock on the door of Zul’s employer, Tan Sri Shamsuddin Abdul Kadir, gave Nadhirah a chance to survive and lead a normal life. Until today, Zul and Zaini are eternally grateful for the £70,000 (RM394,000) donation for the treatment. Dr Tan offered his services free.
That was only the beginning; more hurdles were to follow.
The Malaysian community in London chipped in with donations to keep them going, although they had not asked for help.
Days after the operation, I saw Zaini in agony as the morphine had worn off; in the other wing was Nadhirah in worse shape than before; and a distraught Zul running from one wing to another to be with his loved ones.
Sadly, Nadhirah’s liver was rejected and they came back for another procedure. Today, she is 27 and still leading a not quite normal life.
“I would have done as any mother would. You are a mother, Kak Zaharah, you know the answer,” said Zaini recently.
The transplant had meant she had to give up her job to look after Nadhirah, who fell sick easily.
But the transplant, although not 100 per cent successful, had given her more than 20 years of life with someone she considers her best friend and confidante.
“Now she needs another total liver transplant, but we couldn’t do it…” She left it at that.
Noraini Awang and husband Bakar had their 2-year-old son, Akmal Syakir, operated on at the Great Ormond Street Hospital in 1995.
He was born without a rectum and two holes in the heart. Although they were promised funds, they were short of money and had to endure a long wait. I had done a short piece for RTM on their plight and thankfully, a phone call came from the Brunei embassy the next morning offering to cover the remainder of the cost of the operation. The operations that followed were successful but sadly, Akmal died in 1998 of measles.
Much later I was to meet the parents of the wonderful and cheerful conjoined twins, Ahmad and Muhammad Rosli. I could still hear their squeals of laughter as they raced in their walker in the back garden of a house not far away from London.
The parents did all they could to give them an almost normal life and a lot of hurdles had to be overcome before they were operated on in the Middle East. It was what any parent would have done to save his or her children’s lives and spend whatever precious time left together.
I remember one last case I had had to do as an interpreter; perhaps, one of the most difficult. I was called to interpret for a Malaysian couple at the Great Ormond Street Hospital. I was asked to tell them that the doctors had to stop treatment on their 3-month-old baby.
I couldn’t find words to relay the sad news to the parents. And when I did, I was asked to plead on their behalf, to seek other treatments. I could only look from parents to doctor and back at them, for the answer was still no.
The look on the young parents’ faces said it all: “What if it was your child?”
Yes, I would do the same even for a chance of another day of hugs and cuddles.