Abu Dhabi: Her name was Janna, meaning "heaven" in Arabic, and she is believed to be there, says her father, Karama Al Katheri, an Emirati who lost his seven-month-old girl due to what he calls "poor and slow medical follow-up".
Janna and her twin brother Saeed were born on June 21, 2010. Both were thought to be perfectly healthy until 10 days after Janna was born when her parents started realising that her body, including her eyes, had turned pale yellow.
"We immediately transferred Janna to a hospital and that's when we found out that something was wrong. On January 12 we admitted Janna to Tawam Hospital, which is when she was diagnosed with liver failure," explained Janna's father.
According to Janna's medical report, which Al Katheri sent to Gulf News a week ago, Janna was diagnosed with 11 medical conditions by doctors from Tawam Hospital, some of which included liver failure, portal hypertension and renal failure.
The report said: "Janna was admitted with a deteriorating general condition. She needed admission to the paediatric intensive care unit. Her twin brother, Saeed, is doing well. There are no liver diseases in the family and no specific childhood diseases."
Janna's paediatrician, neonatologist and the hospital's director of medical affairs recommended that she undergo a liver transplant.
"It's obvious that Janna's only real hope would be a liver transplant, which is not available in the UAE. I therefore advise that she is referred abroad for this. The parents have indicated that they are willing to donate part of their liver."
"According to our paediatric intensive care unit physicians, Janna can be safely transported by ambulance flight. A regular commercial flight is totally out of the question in her present condition," said the medical report.
Al Katheri immediately sent the recommendation to send Janna abroad to the International Patient Care (IPC) at the Health Authority Abu Dhabi (HAAD), which helps facilitate travel and medical treatment for Emirati patients.
"Till two days before her death, Janna's doctors — who were monitoring her closely and taking good care of her — advised that Janna travel immediately for a transplant. I sent the request to IPC on January 20 and only heard from them last week after continuous follow-up from my side. I don't understand what took so much time to respond, given how critical Janna was," said the mourning father.
When asked for a statement regarding Janna's situation before she passed away, an official spokesperson from the HAAD confirmed that to date there are no liver transplantation centres in the UAE. However, efforts toward establishing a transplant service and initiatives to perform mainly kidney transplants in several centres in Abu Dhabi are under way.
Statement: No decision made yet
Before Janna was pronounced dead on Saturday at 5am, Gulf News was trying to investigate the reason for the delay in sending her abroad.
In an official statement sent by SEHA, which manages public hospitals and clinics across Abu Dhabi, a spokesperson responded as follows:
"Tawam Hospital made a recommendation on January 19, 2011 that the patient in question be sent overseas for further treatment and possible liver transplant. All such requests are sent to the International Patient Committee (IPC) for adjudication. The decision lies with the IPC and the committee has not yet reached a decision. Tawam and SEHA Health System stand ready, as always, to support the IPC and the family in whatever decision is rendered.