Hours, then days: Miracle baby Fattah defying the odds while battling rare disease
Even before Nurfattah Nurfahmy was born, his parents learnt that he had deformities following a scan during his mother's 20th week of pregnancy.
“What the medical team saw were deformities of the limbs, jaw and chest, but they couldn’t tell what it was," said the baby's 28-year-old mother Nurul Fateha Abdul Rashid.
"All we were told was that he might not survive to term, or even if he does, he won’t survive labour.
"When I gave birth to him alive, we were told he’d only have a couple of hours; days at best.”
A month after Fattah was born at Thomson Medical Centre, he was diagnosed with a rare disease known as Arthrogryposis Multiplex Congenita (AMC).
His symptoms included spine problems, cardiac problems as well as clenched fists, and he was dependent on breathing equipment to assist him.
Additionally, Fattah had an undersized chest, raising concerns about his lung development.
“Fattah was born in a sitting position, cross-legged. His feet were off the opposite sides,” explained the mother.
“AMC is a rare condition and occurs in about one in 3,000 to 5,000 live births. In Singapore, a rare disease is defined as a disease that affects fewer than one in 2,000 people,” Dr Nikki Fong from KK Women’s and Children’s Hospital (KKH), explained.
Dr Fong is the consultant at the Genetics Service, Department of Paediatrics.
There is no cure for AMC, which is a genetic condition. Curiously, no one in the family has a history of AMC.
In many patients, the contractures usually improve over time with early physiotherapy and orthopaedic care. Two-thirds of affected individuals are able to live independent and productive lives.
Fattah is now six months old, and is undergoing occupational therapy and physiotherapy.
“He also sees therapists for his speech. We don’t know if he can talk. It’s a rare syndrome, so there’s no point of reference,” said Fateha, who added that for the past six months, Fattah has been visiting the hospital three times a week.
He has already undergone hip surgery, and there’s no telling how many more surgeries he will require.
In the next three months, he is set for surgeries for undescended testes and inguinal hernia, as well as a procedure on his hands.
The cost of these surgeries range between $8,000 and $10,000 each, prompting Fateha to create a GoGetFunding page at https://gogetfunding.com/fundbabyfattah
“We don’t have the means to afford Fattah’s medical needs should anything happen to us,” Fateha said. “Having some money put aside puts our mind at ease.”
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