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My sickled-cell anemic daughter

By Muhammed Adamu
LIFE is a potpourri of two tumbles. Or so said the proverbial frog that flew itself into a bowl of hot water. Today is Sallah. And if the world was in the regular tumble I have been accustomed to, I should be in Minna right now giving out to and also receiving meat from relatives, friends, neighbours and well-wishers. But here I am, writing this week’s Column from my sickled-cell anemic daughter’s bedside at the Federal Medical Center, Bida. My wife and two of our other kids, Umma and Abba, – already physically and emotionally fatigued from Walida’s current ‘crisis’- are wondering how ‘daddy’ can still write as what they have conceded to be my favourite daughter –and soul-mate- writhes in pain right before me.

They know how I often do the facial grimace in shared pain, whenever Walida gets to be needle-pierced. And you bet this past ten years of her crisis-ridden life, my daughter has really taken one too many piercings! Whether it is the normal injection on the buttocks which happens every now and then, or injection for the administration of drugs intravenously, or the regular piecing either of the vein or of the fingertip to take blood samples for testing ‘blood count’, or the no less frequent piercing to transfuse blood when the count is low, or the more routine piercing to administer drips either in preemption and prevention of ‘crisis’ or in the battle to stop an unpreventable ‘crisis’. In fact, often a conduit needle is left permanently on the back hand of my daughter to prevent the fresh often damaging search for a vein whenever the need arises.

If every needle hole from Walida’s buttocks, shoulders, groins, laps, arm-joints or the more painful back of the hands or tips of the fingers were to give testimony to how my daughter has been made a virtual junky of necessity, it will not be a one-‘moonlight tale’ alone, of medical woe. It will be ‘a thousand moonlights and one’. But what can you do? Life just has to go on! Including writing this Column while she lies critically at death’s door.  In any case not doing so will not necessarily avail in any way to mitigate her pain. With these wicked ‘sickled-cells’ it is always ‘damn you if you care, damn you if you don’t!’ In fact, often staying away and just letting the will of God prevail, is more therapeutically caring than a conscious attempt to do something.

Right at death’s door

The whole of last week up until today has been particularly the most tribulating in all the ten years of my daughter’s crisis-ridden life. Of the many previous close shaves with the possibility that we might lose Walida, we came the closest in this crisis that she is presently in. We had been –as usual- in and out of our regular private Taimako clinic in Minna where –in the last decade- my daughter’s name has become somewhat house hold, and her face in fact by now inducted into the Hall of ‘Who’s-Who’ in this private paediatric clinic that is about the only one within our immediate emergency reach from my Top Medical Road home in Tunga.

As with all patients, ‘crisis’ is always readily around the corner.

Walida
Walida

And doctors say that it can be triggered by the most innocuous situations whether in hyper active patients or in passive ones: from as trifling as the stubbing of the toe during a walk or a sudden fall from an inadvertent push by a fellow child, to as tenuous as a single bite from a mosquito, or a marginal rise or fall in body temperature. These inexplicably erratic ‘cells’ can easily be provoked, and -somewhat conspiratorially- will transform from ‘concave’ to ‘convex’, sickled shaped making passage by them especially through the millions of tiny vessels underlying the bones of the body, like the proverbial biblical ‘camel’ passing through the ‘eye of the needle’ –it is not only excruciatingly painful, but it puts every organ of the body especially the heart in severe pain and at risk of impairment.

My daughter’s ‘crisis’ started with a mild sore throat which although we had treated with the utmost dispatch, has still led to a full ‘crisis’. For Walida particularly whenever she is about to go into full ‘crisis’, the tell-tell symptoms are all too apparent: a croaky, hoarse voice, severe pains from any or all of her legs, hands and the spinal cord.

Often the thin line between a ‘crisis’ and a ‘no-crisis’ situation is at the discretion of these unpredictably erratic blood cells whose queer behaviour is still the subject of medical research and enquiry.

Walda’s current ‘crisis’ would be the second time that with each passing day of medication, her condition has continued to deteriorate, indicating as doctors say that sometimes these conspiratorial ‘blood cells’ have a way of acting like the dreaded HIV virus, fighting back every ingested drug with vengeance. Back at Taimako Clinic in Minna, this was the first time my poor daughter, lying virtually lifeless, would ask her mother to call her daddy quickly because she felt she might not make it this time. My daughter’s heart was pounding so hard and so fast you could see it a few metres away from a furiously pulsating rib case. And when she said to her tearful mother and other relatives around “Maamaa, my breath is trying to stop. I am going to die”, everyone was crying like they had already lost her.

But she didn’t die. We did manage quickly to make it here to the FMCB where an army of young, brilliant doctors with a touch of Hippocratic empathy and hunger for success -not to forget their cheerfully amiable nurses– virtually reenacted the waking of Lazarus from the dead. After coming to the FMCB, Bida I am going away with the conviction that given the right facility, a harmonious health management system, and a clean, ambiently-healing environment, medical tourism in our dear country can be placed not too far away from the reach of every Nigerian.

We were at the FMCB courtesy of an emergency arrangement swiftly made by Doctor Abubakar Usman, a Consultant Paediatrician with the Centre, on the request of Doctor Ibrahim Idris of the Minna General Hospital, who is also a brother in law of mine. Doctor Mohammed of our regular Taimako Clinic who has become a compassionate father of medical necessity to my ailing daughter, for the second recently was expeditiously cooperative in arranging a quick referral for us to meet up with the arrangement. The first time he was to the Asokoro General Hospital where like here at the FMCB there is an established ‘In-and-Out-Patient’ Clinic for sufferers of this debilitating condition of the blood.

What you should know about sickle-cell anemia (POSTSCRIPT)

THE following summarises an article on the Encarta encyclopedia and it tells you some of the basics you need to know to avoid making the mistake that some of us made: ‘Sickle-Cell Anemia (is a) genetic disorder of the blood leading to frequent and severe infections, damage to major organs, and episodes of unpredictable pain in the back, chest and abdomen. Early symptoms may include serious infections, pain and swelling in the hands and feet, and enlargement of the abdomen and heart’. It is caused by a defective gene that produces an abnormal form of hemoglobin, the component of red blood cells responsible for transporting oxygen from the lungs to the tissues.

The abnormal hemoglobin, called hemoglobin S, distorts red blood cells after they release oxygen in the tissues. These distorted cells are called sickled cells because of their resemblance to the sickle, a type of crescent-shaped cutting blade used in agriculture. The sickled shape makes it difficult for these cells to pass through tiny blood vessels, resulting in intensely painful blockages that prevent vital oxygen and nutrients in the blood from reaching organs and tissues, impairing their function. As a result, sickle-cell patients are also vulnerable to a number of infections. When the blood flow to the brain is affected, sickle-cell patients may experience brain damage, such as stroke.

A child with the disease must inherit one copy of the defective hemoglobin gene from each parent. Many people carry one hemoglobin S gene with no significant health problems as a result. But these carriers of the sickle-cell gene can pass the gene to their children. When both parents are carriers, they have a one in four chance with every pregnancy of having a child with sickle-cell anemia.

Bone marrow transplantation is the only experimental cure now of sickle-cell anemia in a small number of children who are able to find an acceptable, related bone marrow donor. And although courtesy of my good friend and colleague, Sunday Dare, the Jagaban –who had once lost a daughter too- had offered graciously to foot the bill for Walida’s operation, I worry that given the newness of this breakthrough, every beneficiary of this medical relief is also a virtual guinea pig until its efficacy, over time, is certified. I do not want to risk the life of Walida to this medical gratuity.

But how could I have forgotten the Gern-French-trained Guinean Doctor Sisse’s warning a few months into my marriage, after he had accepted to be my wife’s first ante-natal doctor, that a day like this –sooner or later- awaited us  when inevitably as we counted the blessing of the womb, our mutual AS conditions would definitely at least one ‘SS’ child in every four. That turned out to be Walida. Help me say a prayer for her.

 


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