Raising a child with a terminal illness is something every parent dreads. The psychological drain, let alone financial demands and the fear of one day giving in to the disease are some of the torments loved ones go through. Samuel Buku Macharia and Kessy Kangai Buku know this all too well. They share their experience of raising a haemophilic child with FAITH MURIGU.
Samuel Buku Macharia is a principal consultant lecturer at the Kenya School of Government in Nairobi. He trains top government officials on leadership and governance among other courses, a position he has held since 2006. Previously, Samuel worked with the Kenya Technical Teachers Training College (KTTC) and also the Mombasa Polytechnic as a lecturer.
Samuel did his undergraduate work at Kenyatta University and has since furthered his education. He holds a Masters degree from Kenyatta University and is currently a PhD student in human resource management at Jomo Kenyatta University of Agriculture and Technology (JKUAT). He is married to Kessy Kangai Buku, a lecturer at KTTC. The couple met at Kenyatta University in mid 90s as they pursued their undergraduate degrees and got married in 1998.
They have two children, Sidney Buku, 14, and Tracy Buku, 11. Nothing prepared them adequately for what was awaiting them before the birth of their first child. Although, the couple had discussed many issues during courtship to prepare themselves for marriage, they hoped against hope they will not have to live with a haemophilic child. The haemophilia condition runs in Kessy’s family and she shared this information with Samuel long before they committed to marriage. They talked about it and read extensively about the condition and hoped and prayed that they would get healthy children.
Samuel narrates their experience: “Our first child, Sidney, was born in 1999 in Mombasa where we both worked. There was nothing to raise suspicion about his health. We decided to have him tested for haemophilia when he was six months old. This is a hereditary bleeding disorder. People suffering haemophilia have a low level or absence of certain clotting factors in their blood.
One of my wife’s sisters had lost a son to the condition. The haemophilia gene is usually passed down from a parent to a child. Usually, the woman with haemophilia genes can pass it on to her children, with a 50 percent chance of male children getting the condition and the girls becoming carriers. Haemophilia mostly affects boys and majority of them often die in infancy. Sometimes when they fall and get an injury their tissues get destroyed for the rest of their lives.
I may say that we were at an advantage because we were psychologically prepared that our son could have the condition and that is why we requested for early tests. We travelled to Nairobi’s Kenyatta National Hospital (KNH) to have the tests done. KNH has a haematology department run by the hospital and the faculty of medicine at the university of Nairobi.
Confirming our fears…
The test was positive for haemophilia. With this not surprising confirmation, we embarked on the long journey of living with a haemophilic patient. We couldn’t get facilities in Mombasa to deal with the problem and that meant travelling to Nairobi any time our son needed help. It was a costly and tiresome exercise.
Awareness of the condition in the country at the time our son was diagnosed was low and many children went undiagnosed, while others didn’t know where to get help. There were cases of young boys bleeding to death after circumcision because their parents were not aware they had the condition. In our quest for help for our son, we found that many health workers were ignorant of the condition.
We always carried a letter from KNH advising health care givers that our son should not get an injection but instead all medication was to be given intravenously. One of our worst experiences was when our son was one year old and he fell and injured his arm as he was learning to walk. We took him to a doctor in Mombasa who said the injury needed surgical treatment as it was already infected.
Our son bled profusely after this minor surgery. We took him back to hospital where he was given a blood transfusion and when he was stable enough we transferred him to KNH. He was given a clotting factor treatment. This comes from human blood or can be manufactured using genetically engineered cells. Lack of a clotting factor is what causes people with haemophilia to bleed for longer periods than would normally happen to a person with normal blood factor levels. What pauses the greatest danger to haemophiliacs is internal bleeding.
It was very difficult managing our son’s condition from Mombasa and many times we lived in panic and anxiety. I was transferred to Nairobi later in 1999 and my wife followed in 2000 and this made our life much easier as we were now close to KNH.
An expensive affair…
Sidney sat for the Kenya certificate of Primary Education (KCPE) in 2012. In my culture, most boys are circumcised before they join secondary school. We didn’t want Sidney to join secondary school and face bullying because he was not circumcised, but there was a problem. He needed enough clotting factor to ensure he went through the procedure safely. Sold in international units (IU) depending on the age and weight of the patient, as well as previous bleeding incidents, the quotation for our son’s needs to undergo circumcision came to two million Kenya shillings. He required about 20000 IUs at a cost of Kshs 100 per IU. We are grateful to Professor Chite Asirwa, the founder of Haematology Society of Kenya based at the Moi Teaching and Referral Hospital, who helped us get the required factor for free. Unfortunately, this procedure remains unattainable for most boys whose parents cannot raise the money.
The greatest challenge haemophiliacs face is unavailability of factor and funds to purchase it when it is available. There is also need for awareness creation about the condition. There are only about 400 people registered as living with the condition but this number is estimated to be over 4000. There is urgent need to reach out to families and children suffering in silence, as they need help. I had a successful meeting with the Medical Services Minister and our hope is that the government will step in and pay more attention to haemophiliacs by ensuring availability and affordability of factor.
Sidney has been admitted to hospital severally for even minor things such as nosebleeds. Teething was also a major issue, as it required administration of factor before removing a tooth. He cannot enjoy most sports that other children his age enjoy. Also, any small injury requires emergency treatment. Over time, he is better able to take care of himself and knows what is dangerous and he will try to avoid it, unlike in the early days when he did not understand why he was being prevented from participating in some sports.
The Jose Memorial Haemophilia Society of Kenya, founded by a mother, Dr.Maureen Miruka in memory of her son, Joseph Nyang’wara, who succumbed to complications of haemophilia in 2007 at the age of six, is playing a very important role in enlightening people about haemophilia. The society uses experiences of people living with haemophilia or caring for people with the condition. It aims to obtain better medical care for people with haemophilia through securing blood clotting medicine, training, and teaching patients how to care of themselves.
We have also formed a group of parents whose children have haemophilia that meets annually. During such forums we discuss the challenges we are faced with and help each other to overcome them. We act as a support group and hope others can join us so that together we can chat the way forward for our children.”
More about haemophilia…
Statistically, one in 10,000 in a population has haemophilia. Haemophilia is a life-long condition that has no cure. Due to lack of information, many people living with haemophilia suffer loss of blood, destruction of body tissues, deformity and even death without knowing the cause. The substance used to help stop bleeding is called Factor and it is extremely expensive. You need about Ksh.300, 000 to treat one incident hence it is unaffordable by majority of Kenyans.
Does haemophilia only affect men?
The most severe forms of haemophilia affect mostly males. Females only get the serious form if the father and mother carry the gene, and this is extremely rare. Female carriers display mild symptoms of haemophilia.
How is haemophilia inherited?
The haemophilia gene is passed down from a parent to a child. When the father has haemophilia but the mother does not, none of the sons will have haemophilia. However, all the daughters will carry the gene. Women who have the haemophilia gene are called carriers, and they can pass it on to their children. When the mother is a carrier and the father is normal, there is a 50 percent chance that a son will have haemophilia and a 50 percent chance that a daughter will carry the gene.
What are the signs of haemophilia?
The signs of haemophilia A and B are the same – big bruises, bleeding into muscles and joints, especially the knees, elbow, and ankle, spontaneous bleeding, bleeding for a long time after getting a cut, removing a tooth or having surgery, or serious internal bleeding into vital organs, mostly after a serious trauma.
How is haemophilia diagnosed?
Haemophilia is diagnosed by taking a blood sample and measuring the level of factor activity in the blood. Haemophilia A is diagnosed by testing the level of factor VIII coagulation activity in the blood. Haemophilia B is diagnosed by measuring the level of factor IX activity.
How is haemophilia treated?
Haemophilia is treated by replacing the missing clotting factor in the blood. This is done by injecting a product that contains the needed factor into a vein. Bleeding stops when enough clotting factor reaches the bleeding site. It is very important that treatment is given as quickly as possible to prevent long-term damage. With an adequate quantity of treatment products and proper care, people with haemophilia can live perfectly healthy lives. Clotting factors are found in factor concentrates, cryoprecipitate and plasma and whole blood.
Is there a cure for haemophilia?
There is no cure for haemophilia yet but gene therapy remains an exciting possibility and holds out the prospect of a partial or complete cure. There are many technical obstacles to overcome, but it is encouraging to see the research efforts currently underway.
For more information or to get in touch with people living with haemophilia visit:
World Federation of Haemophila:www.wfh.org
Jose Memorial Haemophilia Society of Kenya: www.jmhsk.org
Kenya Haemophilia Care (KH-Care): www.hemophiliakenya.org
Kenya Haemophilia Society located at KNH.
Published on February 2013