A heartbroken young couple, whose seven-month-old daughter is in urgent need of a liver transplant, is begging Prime Minister Kamla Persad-Bissessar for help.
Since Saturday baby Neoma Urquhart has been languishing at the San Fernando General Hospital breathing with difficulty and unable to move.
Her stomach has swollen to the size of a football and her weight has dropped from 12 pounds to six pounds, according to her parents.
Her laboured breathing has tugged at the hearts of the hospital nurses who are begging the authorities to move swiftly to take her to Argentina where a team of doctors are waiting to do the liver surgery.
However, even though the couple has qualified to access TT$1 million from the Children's Life Fund (CLF) they are still in need of US$90,000 to pay for an air ambulance to transport the baby.
In an interview yesterday, Neoma's parents–Bianca Urquhart, 40 and Marc Urquhart, 34, of 261 Bonne Aventure Road, Gasparillo–said each day is like a nightmare. Bianca said Neoma's condition had worsened over the past two weeks.
"I can't sleep or eat. Every time the phone rings, I fear the worst," Bianca cried. She said her pregnancy was normal but when Neoma was born they noticed signs of jaundice from two weeks.
Medical history
At three months when the jaundice did not subside they took her to the San Fernando General Hospital where she was diagnosed with a biliary atresia – a disease of the liver in which the bile ducts become inflamed and blocked soon after birth.
This causes bile to remain in the liver where it starts to destroy liver cells rapidly and cause cirrhosis, or scarring of the liver.
Since April, Bianca said they applied to the Life Fund for help. A medical report confirmed biliary atresia, liver failure, anaemia, mild pulmonary stenosis and right inguinal hernia.
Although a urinary tract infection was resolved, Bianca said the baby's blood results showed elevated liver enzymes and elevated bilirubin levels.
"We were very worried but the hospital did all the tests," Bianca said.
In late February, their worse fears were realised when a HIDA scan showed biliary obstruction. Abdominal ultrasounds also showed no evidence of the gall bladder or common bile duct.
On March 2, after a review, Bianca said the doctors ordered a liver biopsy. It showed "gross ascites (fluid accumulation), a grossly cirrhotic liver, atretic (closed) gall bladder and no bile duct."
Bianca said they then contacted the former attorney general Anand Ramlogan who sent an email to Minister of Health Dr Fuad Khan on April 4 requesting assistance. Khan contacted Dr Maritza Fernandes of the Life Fund.
On April 5, Fernandez responded, saying: "Indeed this baby would qualify for funding, via CLF. We have sent others like this to ETHE in Argentina and they did well.
After six months the Kasai procedure usually changes to a liver transplant. The parents need to come into the unit on Tuesday with the report."
Neoma's father, Mark ,said all documents were taken to the Life Fund and Khan made a request to expedite. However, Mark said more than six weeks passed and during that time Neoma's condition worsened.
When the approval was finally granted on Wednesday, Mark said Life Fund officials told him that he would have to come up with US$90,000 to pay for an air ambulance for the baby.
"Where will I get this money? I don't have US$90,000 lying around," Mark said.
He added their bags were already packed and they were waiting on clearance to leave for Argentina.
"We are desperately hoping that nothing goes wrong with our baby. We hope that she pulls through this and all arrangements could be made for us to go to Argentina," Mark said.
He also said his colleague, Joshua Bhagwandass, whose daughter Hannah did a similar operation several years ago before the Life Fund existed, guided him through the process of getting an appointment in Argentina.
Account Information
Anyone wanting to assist the baby can contact Mark or Bianca at 780-9232/682-1610. Contributions can be made to RBC Bank Account- 100099170374685.