Couple in desperate bid to save son
THE cash-strapped parents of a seven-month old boy suffering from abnormal growth of the skull which leads to face and head deformation is “desperate to find a way to get treatment or a second opinion” after their request for a surgery was turned down.
Couple Lani Karim and Jainah Sarah from Lumut have recently had their request for their son, Adam Darwis, to have surgery at Raja Isteri Pengiran Anak Saleha Hospital (RIPAS) declined. An attending doctor's note recorded that the baby's “very advanced stage of deterioration and at this stage poor prognosis” leaves surgery as an “inappropriate” option, with Adam now left with morphine medication prescribed to mostly manage his condition.
“We haven’t been given any further treatment options to improve his condition. We are desperate to find a way to get treatment or a second opinion at JPMC or outside the country - but we cannot find enough money,” said 47-year-old Lani.
Adam was initially born with a clover leaf-shaped skull, but his upper head has been steadily expanding – measuring 68 cm at his last hospital admission last April 27. Doctors have diagnosed him with severe craniosynostosis or Pfeiffer Syndrome.
The couple said they were initially offered surgery within three weeks of Adam's birth at RIPAS but claimed they were pressured into deciding without much time, leading Lani to decline. They disagree with a recent doctor's note that they were "never agreeing" to the surgery - pointing out that they had only turned down option once.
“When the doctor first told me the chances of the surgery were 50-50 I was very worried. I began asking the doctor questions, telling him I was unsure, but he eventually flipped, saying: “if you don't want the surgery then just sign (to decline)’.”
“He then showed the form – and pointed to the section declining surgery. My emotions were all over the place at the time, I didn't want to risk my child dying. I signed then and there to decline,” said Lani.
However Jainah said that they both decided to have a go at surgery when Adam turned three months old, but were declined by doctors at RIPAS. “We were told it was too late,” said the 42-year-old mother.
At every scheduled appointment thereafter, the couple tried to push for surgery or other treatment options. In March, Adam was prescribed daily doses of morphine to control his pain.
On April 27, the couple rushed Adam to RIPAS after finding liquid oozing from a section of his swollen head. He was discharged after two days with morphine, antibiotics and topical eye drugs.
When approached yesterday, the Ministry of Health was unable to comment.
The Brunei Times