MY PASSION FOR HEMOPHILIA
One and a half decades ago, my son was born (now 16yr old, a high school student). He grew up like any other boy in good health until when he sustained an injury to his upper gum while chewing sugar cane. It was a horrible experience before my son could recover back.
Since his birth, her mother could discover unusual lump swelling beneath his skin as she applied jelly to his skin. At times she could accuse her elder sister of bullying him when she is not around. I remember one day giving corporal punishment to my daughter for these allegations from her mother. The issue of his swelling came to our attention when he developed a larger swelling on his belly that gave us sleepless nights. By then l had acquired an internet-enabled phone which l could google and check for possible causes.
I remember landing on an article that directed me to the Facebook page of a certain Indian guy who was trying to talk something about Hemophilia and its symptoms. His article made a mark on my mind and from that day l started doing a lot of research to know more about what could be ailing my son.
It was until when he got an injury on his gum that the journey to face and know hemophilia started. The day this incident occurred, l and my wife were around and we took an assumption that, as usual, his bleeding would stop. Her mother could wipe the oozing blood from her mouth without paying attention to the continued bleeding. After dinner in the evening, her mother carefully laid him on his bed.
The night was as usual until 6 am in the morning when we discovered bloodshed in his beddings. It was horrible! His face was full of blood and he could not talk because blood had clotted in his mouth making a “lump” making it impossible for him to talk. With the little wisdom we had, we managed to extract that lump of blood from his mouth and opted to take him to Kakamega General Hospital where he was examined and we went back home with sylate tablets as prescribed by the clinician.
Things didn’t work, the following day, it was much worse and we resolved to go to a private hospital where he was hospitalized for being anemic. On the fourth day of his hospitalization, l received a phone call that urgently required me to transfer my son to Kisumu for a blood transfusion, by then l was at my place of work. May God bless Dr. Kedaha for this quick conclusion. Before we could leave the hospital, the doctor gave us a transfer letter to Obama children’s Kisumu JOOTRH that called for a coagulation test to show the clotting time of my son’s blood.
At Kisumu, Obama children were another nightmare to get blood for transfusion. It was then that l came to learn that, donating blood voluntarily is more important. I had donated blood at Kakamega before leaving but unfortunately because of the condition of my son that required urgency, the blood could take more time for screening for it to be ready since there was none at the blood bank.
My son situation continued to worsen, her mother had no hope, but God never fails. It was on Thursday morning when a team of doctors and medical superintendent were on a normal routine checkup for patients, came across my son and a madam in civilian with a label on her chest “Med sup” went through his file and inquired why My son hand not been transfused with blood. The conversation that followed was if l has ever donated blood voluntarily. My answer was that l donated blood at Kakamega for my son a statement that irritated her mind. “you are selfish, when people volunteer to donate blood … you feel it is a waste… now whose blood do you want to be given to your son…? “These words were too harsh for me considering the situation of my son. But finally, my son received blood in the evening, and his eyes that had stayed closed opened.
This gave us hope as we struggled to let him bite his favorite fruit sweet banana. A few days later, we have discharged with a clarification that my son’s clotting wasn’t normal. We were then referred to book a clinic near our residence of which we opted for Dr. Kedaha’s clinic, who later referred us to Kenyatta National Hospital where my son was diagnosed with hemophilia A severe. My son resumed his normal health gradually although his memory was affected such that he could not name objects and understand simple instructions at the age of five for 6 months. Briefly, he has undergone a lot of external and internal bleeding. His school life has been on and off because of bleeding.
Access to treatment has been a challenge whenever he gets an injury. The nearest treatment center for care for Hemophilia was only at MTRH Eldoret which is 100 km from our residence. Doctors, clinicians, and nurses have played a big role to educate us about home care and self-infusion. His first prophylaxis was when he had a swelling knee. He could not walk nor stand, but the following day after prophylaxis my son walked although with the aid of support.
Factor as treatment product has been the main alternative to his bleeding both external and internal. By prophylaxis, his circumcision was successful at the age of 7 years. The year 2021 after developing inhibitors, he was introduced to Hemlibra treatment product that is more effective than factor. Hemlibra has really changed his life by reducing the multiple bleeds he used to have. This has enabled him to attend classes regularly and likewise reduced the cost of treatment and uncured expenses.
With the changing world and technology, we hope one day, gene therapy that is more effective will reach every hemophiliac. As a caregiver, we appeal to our government at the local and national levels to consider budgeting for treatment products for hemophilia patients.