Twenty-one-year-old Keenan Prince had never heard the word hemophilia until her only child was diagnosed with the condition recently. Five-year-old Dante Telemaque had an accident while riding his bicycle and life for him and his mother has not been the same since.
“In May 2020, he had a fall from his bicycle and he got a sprain on his left ankle,” Prince said, “and after like two days I noticed some lumps started coming out on his feet, his ankle and leg and so on. It was really painful so I took him to the Bartica Hospital and they did a clotting time test on his ear and the bleeding was not stopping like how it would stop on a normal person…”
Dante was given some treatment and the bleeding stopped. He was released from the hospital but later that afternoon he had to be rushed back because the bleeding started again from the ears. He was admitted and as the bleeding continued, he was transferred to the Georgetown Public Hospital (GPH). There, he was diagnosed with Hemophilia A.
“I had never heard of hemophilia before. I felt heartbroken and I started questioning why this had to happen. He is so young. I took it really hard at first,” was how Prince described the hours after understanding her son’s condition.
Hemophilia 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 hemophilia have low levels of specific clotting factors, which are proteins in the blood that help it to clot. Persons with low levels of Factor VIII (Factor 8) have Hemophilia A, and those with low levels of Factor IX have Hemophilia B.
Hemophilia is quite rare; about 1 in 10,000 people are born with it. The WFH’s 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 hemophilia.
The Guyana Hemophilia Society (GHS) is extremely concerned that to date there are only 15 confirmed cases in Guyana.
Could not walk for three months
After Dante was discharged from the GPH, he remained in bed for about three months recovering from the sprain he had sustained in the bicycle accident as his hemophilia prolonged the healing process.
“He was bedridden all the time,” his mother said. “Everywhere he had to go, I had to fetch him. If he wanted to use the washroom or bathe I had to fetch him.”
Prior to the accident he had been a very active child.
After three months the sprain healed and he was back on his feet but then it was a period of him being bedridden from time to time as he started to get hematomas – bad bruises which occur when an injury causes blood to collect and pool under the skin.
“Sometimes he would be in bed for about two weeks at a time and then he would be back on his feet and then he would be back again and that is how he has been since, in and out all the time,” the young mother shared.
On Mother’s Day he had to be rushed to the hospital after his gum started to bleed when a chicken bone pricked it. He was referred to GPH and he was hospitalised for some eight days.
Now, Prince said, she has to keep “my eyes on him 24/7. He don’t really go out in the yard to play and I am always with him”.
She also has to watch Dante’s diet and ensure he does not consume any food that may cause bleeding in his mouth. If he is eating chicken or fish she ensures that she debones it before he eats. No lime juice or anything sour is given to Dante.
The mother said she cries many times over the life-changing effects her son now has to endure because of his condition.
“Sometimes when he has the hematomas and they are painful he would cry and ask why he had to be born with the disease and why God can’t heal him,” she said sadly.
“I does feel like breaking down to be honest because to see my child in so much pain and I can’t do nothing to help him. It does really be terrible,” she added, breaking down as she said those words.
Prince said so far she has not been able to trace how her son came to be diagnosed with the condition as no one in her family, as far as she knew, ever suffered with it. However, she understands that more than likely she is the one who may have passed it on to her child. According to the US Centers for Disease Control and Prevention, a father who has hemophilia passes his X chromosome to all of his daughters, so they have his hemophilia allele and become heterozygous (carriers). A father passes his Y chromosome to his sons and thus cannot pass the hemophilia allele to them. Without the hemophilia allele, the sons therefore cannot pass it to their children. Hemophilia is more common among boys, as they only inherit one X chromosome, which means that they will develop symptoms of hemophilia if that chromosome carries the mutation.
“It is kind of scary because before him I never knew that I was a carrier and it is really scary. I am already saying that I don’t want any more children because I can’t bear to watch another child of mine go through what Dante is going through so I honestly don’t want any more kids,” the young mother said.
Prince, however, had some words of encouragement for other mothers who might be in her situation. “Hemophilia is a really hard thing when your child has it but you just have to keep the faith and be strong. I can do it, so can you,” she said.
She also advises that they should pay keen attention to their child and not take bleeding and bruises lightly.
“And if you observe those things please go and get it checked so that your child could get help because I never knew and even now I don’t know of anyone in my family that has hemophilia,” she advised.
The single mother said she is now forced to remain at home to ensure she observes her son constantly and she has to depend on the support of her relatives.
Prince said she will be joining the GHS soon.
