- Ricardo Makyn/Staff Photographer
Kareem MvBean with mother Edris McBean
Avia Ustanny, Outlook Writer
WITH THE arrival of their second child, Kareem, Edris and Adrian McBean of Cedar Manor in St. Catherine, were unprepared for the challenges that would come with the birth of this son.
Kareem was born on February 25, 1995, a 'normal healthy baby,' says his mother, weighing 6.5 pounds.
The baby thrived, especially because he had his brother Adriano to play with, and by seven months old he was taking his first step.
But, on one visit to St. Elizabeth at age nine months, Kareem became ill with a high fever. A local paediatrician treated him for infection with antibiotics, but after two days he was still ill. He was taken to Kingston where his paediatrician sent him to the University Hospital of the West Indies where he was admitted.
It was not until he was one year and six months that the doctors discovered that little Kareem was a sickler. He had sickle cell disease.
Then began years of scares and hospital stays.
Respiratory distress
At age four Kareem was again hospitalised. By now respiratory distress and fever were characteristics of his 'episodes'. On this occasion, this was again the case and he was given oxygen and medications.
School and home life were consistently disrupted by a spate of medical emergencies.
By the year 2001, the boy was hospitalised four times with acute respiratory stress syndrome and pneumonia. In October, Kareem went into respiratory failure.
This was the crisis that was to change his life.
He was given blood transfusions, but there was no positive response. The doctors reported that his lungs were failing. He was transferred to the Intensive Care Unit where he was put on a ventilator for breathing.
His mother recalls, "I was really distraught." She remembers feeling the desire to vomit and at one point tearing off her protective hospital gown and running from the area. She was caught by a doctor.
The doctors explained that the machine was breathing for her son and they were really doing everything they could. They were not optimistic, however, that he would survive beyond three days.
His mother, who says that she has been a Christian since high school, turned to praying.
Kareem was hooked to the machine for 12 days and woke up at the end of the last.
The doctors were amazed, but still, not very optimistic. They told his mother that he could not breathe on his own and that she would have to purchase an oxygen concentrator.
Edris and Adrian McBean went to a company where they were able to work out a three-month plan for the oxygen concentrator and power back-up up costing $66,000.
After six weeks more in the hospital their son came home to live on the machine.
He was receiving three litres of oxygen per minute continuously. "He could not come off for 15 minutes without experiencing respiratory distress," his mother recalls.
In February 2002, he was again admitted to hospital for three weeks.
In the meantime, the costs of his care were piling up. "My light bill was now between $10,000 and $15,000 a month," his mother said. Also, she had to hire a full-time caregiver for him, as well as a teacher, because he could no longer attend his classes at Kings Gate Preparatory School.
However, the Jamaica Public Service Company, after she spoke to them about her son's condition, assured her that they would never disconnect her light, whether or not she paid. Her neighbours in Cedar Manor have also benefited. Load shedding for that area was often suspended too.
Improving
Kareem was improving. At first, she would take him in to the hospital every two weeks. This was eventually reduced to a monthly visit.
Edris, always believing that Kareem could attain full health in spite of his sickle cell status, began to look abroad for a solution that would see her son living a normal life without using the oxygen concentrator.
She went on the Internet, searching for a children's hospital which specialised in children with sickle cell disease. She discovered the St. Louis Children's Hospital and emailed them a synopsis of his medical history. The hospital replied, asking for his X-rays and other information from Kareem's doctors. They finally emailed the mother and told her that her son was not supposed to be alive, as adults had died in similar situations. But, they said they would be willing to treat him, and Edris McBean began the monumental effort of finding funds to take her child abroad for medical care.
The cost of hospitalisation would be US$12,500. There would also be the additional costs of Edris' air tickets and hotel stays.
"I asked the brethren at Pentecostal Tabernacle to pray," Edris recalls. Then one day, she decided to write to the Prime Minister of Jamaica to ask him for help. She said that on receiving the letter, Prime Minister P. J. Patterson referred her to the Ministry of Health which responded by funding the total hospital cost.
Travel tickets were also received from Air Jamaica and from the HEART/NTA, which was Edris' employer.
Mrs. McBean remembers the time with amazement. Her prayers were being answered in an overwhelming manner. The total cost of the effort in 2002 was J$1.5 million and the mother says that she only had to pay back US$4,000 of that amount.
When Kareem arrived in St. Louis, the doctors expected to find him immobile. He was walking around with his mobile oxygen machine. The prognosis was positive from the very start. The child was put on Hydroxea and sent back home.
He returned once, for follow-up care, and this time companies which chipped in to help were Victoria Mutual Building Society, HEART/NTA and the Jamaica Money Market Brokers. Others assisted too. In St. Louis the doctors were again surprised at his progress.
"In addition to the drug, I believe it was prayer," his mother states.
In 2004, Kareem can be off his machine for four hours without going into respiratory distress. He can also play with his friends and ride his bicycle without any sign of distress.
Edris McBean remembers that when he was younger, she would have to screen all visitors to the house as no one could come near to him with colds and other potentially infectious conditions.
"His immune system was really low," explains Edris.
Now, a time of great stress for the family appears to be coming to an end. Adriano, Kareem's older brother, his mother says, (now a 14-year-old high school student) had to receive counselling during the hardest times, as also herself. Her mother and father both died after 2001 and, in fact, her mother was in intensive care at the same time that Kareem was in St. Louis.
Edris said that she learnt that she could not take care of Kareem unless she took care of herself.
Her husband, an electrician at Jamaica Flour Mills, was a rock, she said, adding that the experience has drawn them closer, as they spent many nights on their knees.
She is also amazed at the way her co-workers and employers at HEART/NTA rallied around her, and how her pastor and brethren at Pentecostal Tabernacle supported the family.
Edris admits that at one point she was angry with God, but that since she feels she has become a better Christian.
Seeing the progress of her son every day, she feels assured of what faith in God can do.
