EIGHT-YEAR-OLD Aditya Ramlogan calmly put on his sandals and all seemed well until he stood and it was observed that not only did he walk with a slight limp, but he also walked on his toes. The young aspiring doctor has been diagnosed with haemophilia and his mobile disability is just one of the many fallouts from the condition.
His mom, Savita Ramlogan, had never heard of haemophilia until he was diagnosed, but she knew something was wrong a few months after he was born. She observed that her baby was having what she described as “black and blue marks” about his body, but it was only after he was hospitalised at eight months to have a surgery done on an abscess that she found out the reason.
Today, she is worried for Aditya and cries with him when he is in excruciating pain, but her worry is now two-fold as her one-year-old son, Kushal, while not diagnosed with haemophilia,, has been exhibiting signs of the condition. Her full-time job now is carefully watching both of her children in an effort to ensure that they do not injure themselves, as the condition makes an individual injury prone.
“It is not easy. Sometimes I have to run around when the baby sleeping to make sure I finish the work in time, because I don’t want to leave he alone and when we use to like go to the play park and so with Aditya, he would become upset because he could not play like how the other children were playing,” she said.
Haemophilia is an inherited bleeding disorder in which the blood does not clot properly. This causes spontaneous bleeding, and/or prolonged bleeding after an injury or surgery. People with haemophilia have low levels of specific clotting factors, which are proteins in the blood that help it to clot. Persons with low levels of Factor V111 (Factor 8) have Haemophilia A, and those with low levels of Factor 1X have Haemophilia B.
Haemophilia is quite rare; about one in 10,000 people is born with it. The World Federation of Haemophilia Annual Global Survey surmised that with Guyana’s population of approximately 755,000 persons, an average of 52 persons could be living with and suffering from haemophilia.
The Guyana Haemophilia Society (GHS) is extremely concerned that to date there are only 15 confirmed cases in Guyana.
HAEMOPHILIA ‘A’ SEVERE
Aditya has severe haemophilia, which has resulted in him suffering from frequent injuries, including once to his ankle when he fell off a child’s scooter at the age of three.
In Grade One, a bench fell on his foot just around his ankle and the swelling eventually formed an abscess. He was admitted to the Georgetown Public Hospital (GPH) and the bone specialist later informed his mom that because his foot was resting in one position on the bed for an extended time, it needed to be placed in a cast — an orthopaedic device that supports broken, fractured or injured bones and joints in the ankles and feet. The foot was in a cast for a while and when it was taken off, Aditya was walking on his toes. His mother was told that the only way to fix this was for the bone to be repositioned, which meant another cast. But because of his condition, she did not want to take the risk of him returning to theatre.
He now walks on his toes on both feet. The instep of his left foot, which was cast, is stiff and painful whenever he attempts to walk normally, thus it is easier for him to walk on his toes.
Ramlogan shared that sometimes her son would be laid up in bed for a month at a time whenever there is swelling to one of his joints.
“He used to miss school a lot before COVID-19, but he is still an A student because I work with him a lot,” she said.
Ramlogan recalled that when he was eight months old one side of his buttocks started to swell and a visit to the doctor resulted in the diagnosis of an abscess, for which a surgery was performed at a private hospital.
“I remember the night after the surgery he was in recovery and when I wake up the whole sheet was blood and they called back the doctor and he eventually said he have to go back in the theatre to check it out,”
Four days after the surgery he was transferred to the GPH and it was there he was diagnosed with haemophilia.
“I never heard it before and I think it was something he would grow out of it. I thought it was not serious. I thought it could be treated. But is when I take my phone and I Google it, then I understand and I start to cry because for me, is like this can’t come back and it is like somebody born without an ear or a finger or something. That is how I see it,” she said, tears streaming down her face at this point.
Ramlogan was told that Aditya’s Factor V111 (eight) was missing, which meant that he had a severe form of the condition.
At the age of three he jumped from a bench and one of his knees started to swell. They were later told that the jump caused a shock resulting in the swelling, which lasted for one month.
Ramlogan said sometimes his mouth would bleed and when it is excessive she takes him to the GPH.
Ramlogan’s world changed when she read about the GHS on Facebook and contacted the society. She learnt more about her son’s condition and has received tremendous support.
Her second pregnancy was not planned and Ramlogan said while she hoped it was not a boy, she never considered the option of aborting her child.
Kushal was about eight months old when the first black and blue mark was observed and Ramlogan said she was brokenhearted.
“I started to take extra care because I didn’t want him to go through what Aditya went through…,” she said.
Kushal, who will be two shortly, has not yet been diagnosed, but his mother is certain that he has haemophilia.
“I just thank God for the Guyana Haemophilia Society and the WFH, that I getting the medication for him [from],” she said.
The Factor V111 injection is donated by the WFH through the GHS and Ramlogan stores it in her refrigerator and administers it herself.
She called on the Guyana Government to do more for people living with haemophilia, especially in providing the needed injection which, should they have to purchase on their own, would be very expensive. Additionally, even if they have the money they would be unable to access the injection on their own.
This is the first in a series of four articles produced by the Guyana Haemophilia Society (GHS) to bring awareness of the existence of the condition in Guyana.