When Teresia Wambugu discovered that her son was haemophilic, her heart broke into pieces, because she knew exactly what her only son will be dealing with for the rest of his life.

Having grown up with a haemophilic brother and seeing all the challenges he faced, Wambugu knew how difficult her son’s life would be different from his siblings, full of precautions and numerous trips to and from hospitals and if not careful, a possible disability.

Haemophilia is an inherited bleeding disorder in which the blood does not clot properly, which can lead to spontaneous bleeding after injuries and surgeries since a patient’s blood does not contain blood factors that help in clotting.

In most cases, haemophilia is passed down from family to family and most of the time, male children acquire it from their mothers while the female children acquire it from their fathers and daughters are only carriers.

At one and half years, Wambugu’s son, Alex fell down while playing and bit his lip and started bleeding. Four days later, the bleeding had not stopped and despite growing up with a haemophilic brother, it never dawned on her that her son might be suffering from the same disorder.

Fear confirmed

“I then took him to the hospital where doctors thought it was not a normal case, therefore, referred me to the national hospital where several tests confirmed my worst fear.

He had haemophilia type A. That was the beginning of a new chapter in our lives,” Wambugu says. All this while, the mother of fi ve says there were some signs of haemophilia on her son that were so clear though she had totally ignored them, or hoped it was not the case.

She says while still an infant, whenever the baby was carried, there would be fi nger marks on his body, which looked like wounds or blisters and, which doctor’s thought were just skin infections and they would prescribe antibiotics.

“Despite the signs, it never crossed my mind that it might be haemophilia, so we used to take antibiotics religiously,” she notes. After the discovery, Wambugu remembered the journey her brother had while growing up and knew life was not going to be easy for her child.

She says the experience was harrowing and prayed that her family would have the patience to accept God’s will.

School challenges

Sixteen years later, she says the journey has not been easy considering that the boy is a typical teenager who wants to play like his peers or do anything his agemates are doing, such as house chores and even minor house repairs. She says there have been several challenges, but all cannot supersede the hurdle she faced while looking for a school for his son and when he got to the circumcision age.

Wambugu says she has had to transfer her son severally after school administrations failed to understand his situation and got tired of dealing with his disorder.

“First thing, you take him to a school, and you have to explain about his condition, but rarely did they understand. Some felt I was too soft on him or that it was an excuse so as not to get punished. Because outwardly, he appears normal until when he is injured that you realise he has a health problem,” she says.

Wambugu says her husband then decided to take him to a boarding school, but the administration ended up traumatising him often reminding him of his condition to keep him off the playground, Some students used the situation to bully and hurt him. Due to this, he had to be transferred to a Christian-based school, which was managed by a Catholic nun, who was also her former classmate.

She felt that since they had grown up together and her classmate knew about her brother’s similar health predicament, she would be more accommodating. However, this was not to be as the school got tired of the many trips Alex had to make to hospital after getting injuries while playing with his schoolmates. The school asked her to pick him from school, but they never gave up as they enrolled him to another school where he sat for his Kenya Certifi cate of Primary Education (KCPE) examinations.

And despite all the challenges, he was able to score good marks to enable him to join a national school where he still studies. When he fi nished his primary education, he faced yet another hurdle as he was on the verge of missing childhood to teenage hood initiation, which normally happens through circumcision. While his age mates were undergoing circumcision, he could not due to lack of blood factors, making it risky.

“The doctors advised us to take him to the village and come back after a few weeks and pretend that he was circumcised at the village. But while planning to do that, another doctor informed us of blood factors set aside for boys to undergo circumcision .

It was a miracle,” she says. For Wambugu, this was an answered prayer considering that her brother stayed in the hospital for three months after being circumcised, but her son was lucky as he stayed for only two weeks.

Expensive treatment

The boy wishes to live like a normal teenager, but his health condition has been a hindrance and it has been a struggle for his family to make him understand his situation. “This is a condition that can make people disabled, my brother is now living

with disability because of the bleeding, which mostly affects the joints. So, I have to be very cautious with my son. I also have to take blood factors to school every time,” she notes.

Dr Kibet Shikuku says haemophilia patients are at a risk of destruction of some body tissues and organs and when the bleeding occurs in delicate parts of the body, such as the brain then it can be fatal. Shikuku, however, says the most common consequence is the disability caused by hemarthrosis, which happens when something causes bleeding that leaks into the synovial membrane or the cavity inside one of the joints.

This might cause swelling on the affected joints thus making it diffi cult to use the body part connected with the joint, such as knees causing immobility issues.

And due to its delicate nature, Dr Shikuku says patients ought to stay away from rough activities such and contact sports, such as football, hockey or wrestling.

Consultation fees

“When it comes to treatment, it is extremely expensive and without donation, an injection for an adult can cost up to Sh300,000 while for a child, it can cost at least Sh350,000. But with partnership, Dr Shikuku says in some of the hospitals, patients have access to haemophilia treatment free of charge with an exception of the doctor’s consultation fees. Anthony Odek, a board member of Kenya Haemophilia Association says Kenya has close to 5,000 people living with haemophilia.

He, however, says these numbers might be higher considering the majority of parents with haemophilic children opt to hide their children instead of seeking help in management of the condition, especially due to cultural beliefs.

“Haemophilia is one of the marginalised conditions in Kenya which many people are not aware of. The numbers are low because not many people are aware of it therefore there is a lot of misdiagnosis,” he says.

With zero awareness, the majority of communities believe the bleeding disorder is witchcraft thereby rarely seeking scientifi c or medical assistance.

The official says the majority of those who live with it or have children with it come to learn of the problem later in life, where in some cases, it is too late for any mitigation.

“Haemophilia is most common in the Mount Kenya region as the majority of our members are from Muranga and though there is no scientific evidence, I think it is because of the intermarriages,” he says.

Odek says that as an association, they have resorted to creating awareness both the public and health workers on haemophilia and how to handle suspect cases to curb misdiagnosis.