Kenya: He left when I needed him most
Posted by African Press International on September 6, 2008
Maureen and Jose
In Summary
- Haemophilia is a hereditary, life-long condition that is passed from mother to child.
- The powder-like substance cost as much as Sh14, 000 a vial.
When Maureen Mirukas son, Joseph, or Jose as he was fondly known, died in April last year, she felt as if she had no more strength to carry on.
The boy, then six, had been diagnosed with haemophilia, a blood clotting disorder, as a toddler. Haemophilia, which affects only boys, is a hereditary, life-long condition that is passed from mother to child. People with the condition suffer excessive bleeding, even from a tiny cut. Sometimes, the bleeding does not stop without some form of intervention.
The day Jose was diagnosed with the condition marked the beginning of the end of Maureens previously happy marriage. Calamity tends to bring out the best or worst in us, and Maureen says that, while it is easy to love and be happy with someone when things are going well, when calamity strikes, that love is severely tested, and you get to know whether it was genuine or not.
I realised that something was wrong when Jose started getting mysterious bumps and bruises on his hands and knees as soon as he started crawling, recalls Maureen, a research scientist with the Kenya Agricultural Research Institute (KARI).
At the time, she was living in Kisii with her husband son. She assumed that it was just an allergy, until a friend called her at work one day and told her that Jose had cut himself, and that the bleeding would not stop.
On several occasions, I had noticed a little blood on his tongue while breastfeeding him but assumed that he had just bitten himself.
“What I did not know was that he was swallowing most of it.
Alarmed, Maureen took her son to a paediatrician in Kisii, who advised her to take him to Nairobi for extensive tests. That day was to mark the beginning of the battle to keep her son alive and the deterioration of her marriage.
When she reached Nairobi, she went to the Aga Khan Hospital, where doctors spent three days probing for Joses veins so that they could draw blood.
His veins were deeply retracted, making them difficult to find. It was very traumatic for , who did not understand why all those people were hurting him. When they finally managed to draw blood and conduct tests, Jose was diagnosed with haemophilia.
Maureen says that the doctors who were seeing her son did not seem to know much about the illness, so she had to get most of the information on the Internet.
For instance, she found out for herself that she carried the haemophilia gene, and that she had passed it on to her son. She also learnt that Factor, the medicine that aids clotting in people with haemophilia, is crucial to the management of the condition.
However, it was expensive. The powder-like substance cost as much as Sh14, 000 a vial, yet she sometimes needed more than one to stop the bleeding.
Even more distressing was that Maureen did not know anyone else with a haemophilic child, so she had no one to compare notes with.
Before she identified a doctor who understood the condition, Jose was subjected to trial-and-error treatments, which only traumatised him further.
At one point, a desperate Maureen, who was frequently in and out of hospital with her son, answered to an advert from a local health centre claiming that they had a cure for haemophilia.
They assured me that they could cure the condition within three months. Each visit cost me around Sh9,000. By the time I realised that they were conning me, I had spent a lot of money and my son had developed hyperacidity from the medication they had been prescribing. Haemophilia has no cure, she says
By that time, her marriage was going steadily downhill. Jose was frequently sick, and this was putting great financial and emotional strain on her relationship with her husband.
Our sons illness really put a lot of pressure on us. Though he never said it, I had the feeling that my husband blamed me since I am the one who passed the condition on to Jose.
Without her husbands support, the burden of their sons hospital bills fell squarely on Maureens shoulders. She felt like a single parent, but at the back of her mind she was secretly hoping that the her husband would offer the support she so desperately needed.
When Jose was two, Maureen conceived. But her relationship with her husband was still shaky and far from happy. She was constantly stressed, trying to cope with her responsibilities at work, scrimping to save money to buy her sons medication and education and worrying about him while at work.
I never switched off my phone when Jose was alive and always had it with me wherever I went. Every time I received a call from Nelly, my house-help, or Joses school, I would assume the worst and my heart would literally miss a beat, she offers.
The strain was too much and she miscarried when she was five months pregnant.
The experience was painful, but looking back, it was only a matter of time before it happened, she recalls, her eyes downcast. She notes that the pressure of caring for a sick child can easily get to you and if you have an unsupportive partner, it can weigh you down.
Getting a suitable school for Jose was also a problem.
Because of the sensitivity of his condition, he could not engage in activities like swimming, football, or playing the normal, rough childhood games in case he hurt himself. It was, therefore, necessary to find a school that would offer round-the-clock care, she explains.
After a gruelling search, she finally found one where the teachers were willing to carry Jose around when his joints bled, making it painful to walk on his own, and where his schoolmates understood why they could not push or hit him during play.
By then, Maureen had been transferred to Nairobi, a move for which she was grateful because her son could receive proper medical care. Soon after the move, however, her husband announced that he was travelling abroad in search of a better job.
I could tell that he was frustrated by all the challenges Joses illness presented, but I never thought that he would abandon us. I have never been so hurt in my life, especially on Joses behalf, because he really needed both of us.
Having been constantly at her sons side for six years, Maureen observes that sick children constantly battle low self-esteem. She, therefore, knew that his fathers departure would impact negatively on him, even if it was only for a short time.
Initially, he would call me regularly and ask to talk to Jose but after a while, he cut off communication with me and would call Nelly instead and ask to speak to Jose, she says.
She acknowledges that although this was not the ideal situation, she was grateful that he was making an effort to keep in touch with their son. But this was not to last.
Eventually, the phone calls came fewer and farther between, until they fizzled out altogether. But what hurt her most was that he did not bother to come for their sons funeral last year.
Citing her experience, Maureen believes that it is better for a child to be brought up by one dedicated parent rather than by two who are constantly fighting.
Early in April last year, just after the Easter holidays, Jose got so sick that he could not walk. He also started experiencing difficulty in breathing. It was as if the little boy knew he was dying because at some point, on the way to hospital, he suddenly turned to his mother and told her that he was dying.
Maureen recalls him saying, Mum, you know Im dying? Get me a brother or sister so that when I die, you will not be left alone.
I nearly lost my mind, Maureen recalls.
Jose s doctor recommended a minor operation to ease the breathing. However, an operation that was supposed to take just 30 minutes lasted six hours. Before that, they had spent another four hours trying to locate a vein, which infuriated Jose, who was in excruciating pain.
I think towards the end, he just got tired of it all because during those four hours, he did not stop fighting anyone who tried to touch him.
When Jose was wheeled out of theatre, he had tubes protruding from all over his body, blood steadily dripping down them. Maureen nearly went into shock. It turned out that the ear, nose and throat specialists who operated on him knew nothing about his condition; they had no idea what Factor was or how it was mixed and administered.
Maureen had to rush home for some vials to stem the bleeding.
But nothing could have prepared her for what happened that evening. After Jose was injected with the Factor, all signs were that he was would make it.
He had been through the worst, and she was just waiting for him to wake up so that she could take him home. But that was not to be. That day, April 25, Jose finally succumbed to his illness.
Maureen had gone to the car to catch a few minutes sleep and was just drifting off when her mother, who had been keeping vigil by Joses bedside, called her. She raced into his ward, only to find medical personnel surrounding her sons bed, all life support machines off.
He looked very peaceful, like he was sleeping. It is sad that he died just when he was beginning to understand his condition. He understood what was expected of him when he saw the Factor. He would just extend his arm, sit still and let it be injected into his veins.
That is what saddens me most, says Maureen, who took a long time to come to terms with her sons death.
He was an only child and my life was wrapped around him. I was so heartbroken, she says, tears welling in her eyes.
But she remains grateful for the time she had with her son, who she describes as happy, grown-up and a joy to be around.
We would joke that he died at 28. He was intelligent beyond his age, she says.
It is while grieving that she came up with the idea of doing something to honour her sons memory. That is how the Jose Memorial Haemophilia Society was born.
Another reason I decided to form the organisation is the shortage of information on the condition. A lot of parents are groping in the dark and as a result, their children are suffering, with some getting crippled, not to mention the psychosocial stress these families go through.
So far, the organisation has 16 active members, parents with children who have the condition. They are planning to conduct a base study to find out the number of haemophiliacs in the country, and whether their condition is mild, moderate or severe and pinpoint their needs so that they can assist them. The societys clinic is at the Aga Khan Hospital in Nairobi, and is headed by Dr Taresh Dave, a haematologist.
The cost of Factor, which places it beyond the means of many parents, also remains a major stumbling block to managing haemophilia.
This is in sharp contrast to the situation in developed countries, where the drug is available and even offered free in some. The condition is also better understood. In these countries, children with haemophilia have a normal lifespan.
Ignorance of the condition is another deterrent because it allows unscrupulous people to exploit parents of children with the condition.
After interacting with other women with haemophilic children, I realised that some of them are facing the same challenges I experienced in my marriage, notes Maureen.
The story that keeps recurring is that once the man realises that the woman is the carrier, he blames the childs condition on his wife. She adds that some do not want their wives to have other children for fear that she might give birth to another boy.
It is painful, but many women out there with sick children are struggling alone because their husbands are unwilling to shoulder the added responsibility that comes with an illness that has no cure. Having a support group and knowing that youre not alone in your suffering helps you cope better and to hang in there, observes Maureen.
Though she feels that the blow of losing Jose would have been softened if her husband had stood by her, Maureen knows that she is lucky to have friends who gave her unwavering support.
I am grateful to the many people who were there for Jose and I. People who stood by me such as my long-time house-help Nelly; Sheikh, the driver who took Jose to school and charged me much less than he did other parents; my mother, sisters, friends and colleagues who would rush to hospital to donate blood whenever Jose was admitted; my employer, KARI, and boss, Festus Muriithi, for settling the huge bill that Jose incurred during his last admission.
“Looking back, I realise I was never alone; there were so many people who were willing to help, and I dont know how I would have managed without them, she says
A year later, Maureen is looking forward to the future, as well as having and raising another child. Undaunted, she says she is not afraid of having another child with haemophilia, adding that she would cope better since she now knows a lot more about the condition. Her husband is still out of the country but divorce proceedings are underway.
I know for sure that that next time round, the story will be different. It will be a happy one, she concludes.
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Published by Korir, Chief Editor African Press International – api/Source.nation.ke
