After reading the book ‘I’m a survivor: The story of my triumph over sickle cell pains,’ by Shehu Olaitan Mohammed, I just couldn’t but marvel at the resilience of his mother who had four sons with the disease, but he was the only one that survived her. Alhaja as she was called, died in August 2016.
Of course they had the financial capacity and the father was also in the midst of the struggle in caring for his children. This is, however, far from what usually obtains in such cases.
In those days, people were not aware of genotype and the combination that could produce children with sickle cell disease. However, now with more awareness, intending couples go for the test, though surprisingly some still insist on getting married and the parents allow them because they love each other and cannot be separated.
Some would also agree to marry a person with sickle cell thinking that he/she would be able to cope, but in the end the marriage ends quickly.
In one such case, the girl’s father spoke to the young man and explained everything to him. He said there was no problem, but barely a year later the marriage crashed because of the illness.
But the real burden is on the mothers as not many have the support of their husbands and even other family members, so they are harassed and unhappy.
Many fathers would dodge and refuse to go to the hospital to take the child. So, the father has alienated himself; he may give money from time to time or even refuse to give even if he has the money. This leads to quarrels and disaffection.
Someone complains that the wife gives birth to sicklers and he would want to divorce her, as if it is not the combination of the mother and the father that produces the children with sickle cell.
And in terms of divorce, the fate of such children is better imagined unless they are lucky indeed. If the mother carries them with her and moves to her parents’ house or brother’s house as the case may be, the money may not be there for going to the hospital, lack of good food for the children and so on.
Also, some don’t get family support as even their own mothers may be inpatient and intolerant. And if the children are left with the father, not many step mothers would be able to care for them.
This burden is also for other illnesses that affect children; some are born with the condition. Usually it is the mother that goes to the hospital alone.
The sad thing is that these children know that their fathers neglect them and see them as a nuisance. A young boy of six years told his grandmother that he wished to die because his father didn’t love him because he was a sickler.
Apparently, he heard a quarrel between the parents on many occasions; he might even think that he was the cause of their fighting and unhappiness.
Where the illness is the one of deformity where the patient cannot talk, sit or stand up it is still the mother that does everything for the child even if he becomes an adult, unless they can afford to hire a help or get other family members to help.
So maybe a way should be devised to insist on seeing the father or male guardian where there is one in the hospital as they do in private schools and some government schools with strict rules when they call for Parent-Teacher Association (PTA) meetings.
PTA meetings used to be turned into Visiting Days with women and children thronging with food, rugs and mats for picnics. The fathers would be absent to discuss important issues that concern their children.
And Open Day and whatever, they insist the fathers to attend and take part in the affairs of their children’s education. It is not enough just to send them to school and pay school fees.
People should be made to take up their responsibility and it is not always about money because if you don’t have it what can you do?
It is about caring and the we-are-in-it-together attitude, as some would give the money but would have nothing to do with going to the hospital. One may even stay at home and wait for them to come back unless the child is admitted. Even at that some fathers would not rush to the hospital. Some would wait and see if they would be discharged soon, anything to avoid going to the hospital and take their responsibility.
Mothers carry many burdens, but some should not be carried alone. Fathers should be there to equally carry the burden and take care of the children together. The children should never be made to feel unwanted and they do when they see that it is only their mothers that carry their burden.
