Taheera’s Story

Mehboob sits next to Taheera, his four-year-old daughter. Cross-legged on her bed, she rattles away names of people who have visited her since she got up this morning: friends, family, and neighbors.

 

Syringe
Photo: The doctor fills the medicine in the syringe by Marco Verch under Creative Commons 2.0 / Desaturated from original

 

Naila, Mehboob’s wife, joins them with Taheera’s siblings, her seven-year-old brother Hafeez, and her two-year-old sister Fazilla. The phone rings, and it is the receptionist from the clinic. Taheera’s blood results are in, and Dr. Forbes would like to meet with Mehboob and Naila.

It has been a week since the second appointment with Dr. Forbes, whose advice was to keep Taheera isolated from people who may have an infection like a cold or a cough. At this stage, all they know of Taheera’s condition is that she is anemic with possible internal bleeding, which is being investigated. Apart from the purple bruises around her neck, hands, and legs, Taheera is her usual self, chatty and playful.

At Dr. Forbes’s clinic, Mehboob and Naila are ushered into his examining room. After a few minutes, Dr. Forbes, an elderly man with thick reading glasses and wearing the standard white doctor’s coat, walks in and sits in his high backed chair in the corner of the examining room. He picks up a file.

“The blood tests are not what we would wish,” Dr. Forbes says. He flips the papers in the file without making any attempt to read anything. “I am aware that this past week or so has been distressing for your daughter. Apart from being on the small size for her age, she is also weak from her illness. How is she doing today?”

“She is comfortable and not in any pain,” Naila says, as she turns the ring on her finger. “But she feels tired, and she is not eating much.”

“The results of the blood tests indicate Taheera is extremely anemic, and she also has an infection. Both of these matters require urgent attention.” Dr. Forbes goes on to explain he has made arrangements for Taheera to be admitted at Gertrude’s Children’s Hospital and that he has also instructed the on-call doctor about the process for blood transfusion in addition to the administration of steroids and antibiotics. He ends his long-winded explanation by saying that later that night, he would come by to see her at the hospital.

“What’s happening to my baby?” Naila asks, grabbing the arms of the chair.

“Your child’s hemoglobin level is very, very, low. Her admission to the hospital is absolutely necessary,” Dr. Forbes says. “Mrs. Habib, I see you are upset, and I do not blame you as things are moving rapidly for you. We have analyzed your daughter’s symptoms, and the results indicate that she is suffering from a rare type of blood disorder known as Aplastic Anemia,” he explains. “What this means is that her body is not producing new blood cells, and because of this, she cannot fight an infection.”

“What is the cause?” Mehboob asks.

“We don’t know, Mr. Habib, we just don’t know. It might be a reaction from the cough medication that she has been having over the past several weeks. The drug profiles do not indicate such side effects, and so, for now, it is just a theory.” Dr. Forbes says, and after a pause for a few seconds, he adds, “What we do know is that we cannot do anything for it.”

“Sorry?” Mehboob says.

There is complete silence in the room as Mehboob and Naila look at Dr. Forbes to make sense of what he just said.

“Mr. Habib, all I can say at this time is that if you are the praying type, you better pray like hell. Her condition is serious, and there is no treatment available for it.”

Mehboob hears Naila let out a cry as her hand grips his arm. “Oh Merciful God,” she says. “What is happening to my baby?” She leans forward and puts her palms to her ears and shakes her head to block what the doctor says.

“Please, what can we do?” says Mehboob.

“There is no treatment available, at least not here in Nairobi. Even in the USA or UK, the chances of reversing this type of blood disorder is extremely low, at least to my knowledge.”

“We, I mean our community, have a system for overseas medical treatment, I could approach them. You think that this is possible?” Mehboob asks.

“You are her parents, and you must do what you can for her. I can help by preparing a report on her condition and make myself available to discuss this with anyone. But you must act quickly.”

“Yes, yes, I understand,” says Mehboob, his voice barely audible.

The drive home is eerily quiet. Mehboob lightly rubs his chin, which he does when he is in deep thought. Naila frequently breaks out and cries as she tries to process the gravity of the situation.

“We have to be strong in dealing with the situation,” Mehboob says to break the silence. “Your parents and my parents, and everyone will be devastated by this news, and we need to able to somehow explain it to them; I mean in a simple way, I don’t know…”

“This is so hard, I don’t know what to think or say,” Naila says.

The best Mehboob can say is, “Yes, yes.” Even to his ear that almost sounds like the doctor, clinical and cold.

At the hospital, on seeing the staff in their white coats uniforms, Taheera protests and starts to wail. She knows that once again, her arm will be poked to draw blood, and she puts her arms tightly around Naila’s neck. Mehboob and the nurse grab each of Taheera’s arms and pull her away from Naila. Taheera stares at Mehboob screaming “Papa, Papa,” pleading for help as the nurse straps on a pad on her arm and inserts the intravenous needle for the blood transfusion.

Five days pass, and in this short time, the community’s Health Board has reached out to their counterparts in the UK who, in turn, have contacted the Department of Hematology in London. The Department assesses that Taheera has a chance of survival from a marrow transplant from one of her siblings.

The next few days are hectic for Mehboob as he pleads with community welfare for financial assistance, makes several visits to the Ministry to appeal for special permission to obtain foreign currency, arranges travel, and manages the stream of well-wishers from Taheera’s school, neighbors, friends, and family. All this, in addition to the visits to the hospital, only to see Taheera getting weaker by the day.

Mehboob feels relieved that finally, they are on their way to London.

On learning of Taheera’s illness, the airline arranges for the first row of the cabin for Mehboob, Naila, and their children. A sleeping bag placed in front of their seats for Taheera.

The flight crew passes by frequently to inquire if all is fine. For the most part, Taheera is quiet and wants to sleep, and she refuses to drink or eat. During the long stretch of the flight, when the cabin lights are dimmed, Mehboob watches over Taheera as she sleeps. Veins in her neck pound hard at an unusually rapid pace. He fears she will not make it alive to London. In this quiet moment, he pleads to God for mercy. He is prepared for the worst but begs God that if that happens, let it be with the least amount of pain to Taheera. Just then, Taheera opens her eyes.

“Papa?”

“Yes, sweetheart, are you okay, do you want to drink some water?” Mehboob whispers to her.

“Yes, Papa,” she says as she turns to her side and falls asleep.

As they arrive in London, Mehboob calls the hospital. He is advised to go to the Haematology Department on Mortimer Street to meet with Professor Huens. They arrive at a nondescript building in a backstreet of London and walk through a door that could easily have been the side entrance of a warehouse. With Mehboob carrying Fazilla and Naila carrying Taheera, and Hafeez in tow, they troop down a narrow corridor that opens to the reception, the offices, and a large laboratory. In clean white gowns, the staff is seated in aisles, peeking into microscopes, examining slides, and conducting experiments.  A small sign on a glass door indicates that Professor Huens is the Head of the Haematology Department. On seeing them outside his door, Professor Huens stands up from behind his desk to greet them. He speaks rather softly for a person who is nearly six feet tall and of a heavy build.

“We’ll take blood samples from the children that we will examine here at the lab, after which you should take your daughter to the Portland Hospital.” He further explains that a team of experts will meet regularly to review each stage of the treatment planned for Taheera.

At the hospital, the staff expects Taheera and assigns her a room on the upper floor. Strict protocols protect Taheera from infections. Taheera’s clothes are sterilized as is her food by zapping it through the microwave. Each time a doctor or nurse enters the room, they put on a new pair of gloves, a mask, and a new gown, all of which are neatly stacked in an adjacent room. The main room is small with a window overlooking a side street. There are a standard hospital bed and an armchair where either Mehboob or Naila can rest while they are with Taheera.

The next day, while Taheera is asleep, Naila and Mehboob meet Dr. Linch who is the spokesman for the medical team. He explains to them that the fragility of Taheera’s condition requires isolation and the regular monitoring of her vital signs.

“I want you to know that the medications prescribed by Dr. Forbes are continuing and the transfusion of the platelets will be frequent. I assure you that the nurses are well trained and they are aware of our instructions,” Dr. Linch says. “There is one more thing that you need to know.” He taps the statoscope on his palm. “The blood specimens from the siblings did not match the profiles of your daughter, and therefore, the option for the bone marrow transplant is ruled out.”

Mehboob and Naila look at each other, not sure how to react to this news. Neither of them speaks and, as the silence continues, Dr. Linch awkwardly stands up to leave.

“There is a team meeting with Professor Huens later today, and I will keep you informed of the outcome. If you need to speak to me at any time, please inform the nursing staff,” he says as he leaves the room.

Once again, Taheera is held down as the nurses fit the intravenous in her arm. She protests by moving her head from side to side and kicking her legs and screaming. She looks at Mehboob and Naila with pleading eyes and all that they can do is offer soothing words to assure her that it is all going to be alright.

Each time the nurse comes in, even if only to measure Taheera’s temperature and to feel her pulse, Taheera withdraws deeper into her bed and tightly holds either Mehboob’s or Naila’s hand. The nurses do their best to speak to her gently and try to cheer her up, but Taheera does not respond. The worst time for Taheera is when the nurse comes to draw a blood sample or to set up a transfusion. Even though they assure her that she will not feel any pain with the new intravenous unit attached to her arm, Taheera still wails at the sight of the needle.

For most of the day, Taheera rests in her bed, and despite Mehboob’s and Naila’s efforts to distract her by reading stories or crafts, she just wants to sleep. On the fourth day at the hospital, it is Mehboob’s turn to spend the night with her. After the evening blood-draw, the nurse brings Taheera’s supper and snacks. She tries to coax Taheera to say a few words. Taheera does not even make eye contact. Mehboob sits next to Taheera to feed her, but she declines to eat.

“Okay, I will keep it on the side, and if later you feel hungry, we will eat together, is that okay, sweetheart?”

Taheera just nods in agreement as she stares at Mehboob.

“Is all okay sweetheart?” Mehboob asks. “You are unusually quiet. Do you want to eat something else or is there something you would like me to read to you?”

Taheera just lets out a deep sigh but does not say anything.

“Are you feeling tired, do you want to rest a bit?” Mehboob asks.

Taheera nods her head and makes herself comfortable by turning on her side to sleep.

After about an hour, Mehboob notices that she is awake and staring at the ceiling.

“Hi sweetheart, are you hungry now, shall we eat?”

“Not now,” Taheera says.

“Do you want to watch TV?”

“Not now,” Taheera says.

Mehboob gets up from the armchair to sit next to Taheera and holds her hand.

Taheera lets out another deep sigh, and says in almost a whisper, “Papa. Papa, I wish I could kill myself and die.”

“Hush sweetheart, sweetheart, no, no, no, please no, sweetheart,” Mehboob says as he puts his arm around her. “No, no sweetheart. What will Mummy and Papa do, and Hafeez and Fazilla do, without you?” Mehboob tries to comfort her, confused, and unable to find the right words to say to Taheera. “I know that you feel tired, but God is there, and God is Great. Help me pray. Let us both pray………”

“Papa, I am tired. I want to sleep,” Taheera whispers.

“Yes, yes, rest now, and I will stay near you, you rest now.”

Later that night, when the nurse comes by to measure Taheera’s temperature, Mehboob informs her of the startling conversation, and if she could please let Dr. Linch know as soon as possible.

The next day, just as Naila arrives, Dr. Linch walks into the room.

“Ah young lady, how are you feeling today?” he asks Taheera.

She just stares at him.

“I just need to speak with your mummy and daddy, outside of the room for five minutes. Is that okay? You will be able to see them through the glass window in the door.”

They walk into the room adjacent room with the gowns, gloves, an array of medical items.

“The nursing staff informed me of Taheera’s conversation with you last night and this, of course, is concerning and most definitely is not a good sign,” Dr. Linch says. “If she gives up, there is nothing that anyone of us can do. I have had a meeting with Professor Huens, and although we might expose her to infection, we are instructing the staff to not wear masks when they come into the room. Arrangements are also being made to have a child psychologist assist us,” he explains.

Later that day, a young lady with a clown nose comes by with toys and games and tries her best to cheer Taheera, but to no avail, not even a smile. She is the psychologist.

The next day, another meeting with Dr. Linch.

“We have had our meeting, and there are a few things that we need to consider. It is evident that Taheera is terrified of being isolated and surrounded by staff that is in masks and gowns. We need to move to space where she feels safe, and so we want you to take her home. I believe it is her uncle’s place where you are staying?” says Dr. Linch. “The nurse will provide you with a number to call if there is a dramatic change in her condition. If all is well, return on Tuesday and we will readmit her.”

“Now, to the other matter at hand, her treatment options. As you know, the marrow transplant is ruled out. After careful deliberation by the team and advice from Professor Huens, there is a treatment that in medical terms is called ALG, but I will explain to you what it means,” says Dr. Linch.

With the patience of an elementary teacher, Dr. Linch explains to Mehboob and Naila about ALG, a treatment that entails an infusion of animal-antibodies against human blood cells. This is an approach used in the treatment of acute rejection in organ transplantation. In the case of Taheera, the infusion of the serum into her blood will provoke an infection, and the team believes that this will jump-start her suppressed immune system to fight the antibodies.

To Mehboob and Naila, this is the first hopeful information that they have heard since their arrival. Leaning forward to make sure that Mehboob and Naila comprehend the risk, Dr. Linch emphasizes that with this treatment, there is only one chance. If the antibodies in the serum ignite the suppressed immune system, Taheera will start producing blood cells. On the other hand, if the infusion does not ignite her immune system, Taheera will become extremely ill, and as there will be no immune system to fight the antibodies, she will not survive.

“This decision, of course, cannot be treated lightly. We believe that this is the only option we have, but you, the both of you, must decide if we should proceed,” Dr. Linch says.

There is silence in the room as Mehboob and Naila stare at each other. “Yes, yes,” says Mehboob as he presses his fingers against his temple, too numb to say anything else.

“I will leave you to ponder over this matter, and I am available if you wish to further discuss it or if you want more details. I do want to assure you that the Professor and all of us have pondered over this treatment and it is what we recommend for your daughter,” says Dr. Linch as he stands up to leave. “Oh, one more thing to discuss with you. With your permission, we suggest fitting a Hickman Line. This is an intravenous tube that will protrude from her chest, and this will free her arm.  Also, while she is under sedation, we will obtain another marrow sample from her hip bone to compare the results with the test done in Nairobi.”

That evening, Mehboob and Naila sign the consent forms to proceed with the fitting of the Hickman Line, the marrow test, and the serum infusion. The procedure for the Hickman Line and marrow test are done that night.

Taheera is relieved to be out of the hospital and at her uncle’s place and to be close to her brother and baby sister. It is the day of the new moon, an auspicious day, and so that evening, they go to the Jamatkhana, community center, to pray. On this day, there are special prayers and rituals to seek forgiveness for errors and shortcomings.

On Tuesday, much to Taheera’s dismay, they return to the hospital, and they are directed to the clinic for routine blood tests. While they are waiting for the test results, Dr. Linch comes to see them and to get an update on how Taheera fared over the weekend.

“Well, the blood and white cell counts are at the low end, and so I have arranged for the blood transfusion. I suggest that you bring her back tomorrow and at that time we will admit her for the infusion.”

Taheera is happy that she is not being admitted, and she wants the transfusion to finish quickly so she can have her treat at Wendy’s on her way home. Mehboob is concerned that the infusion of the serum will occur the next day, and Dr. Linch’s words echo in his mind, “With this treatment, we have only one chance.”

The following day, they are back at the hospital. After going through the process for the routine blood tests, they wait for Dr. Linch in his office.

“Well, today we have some good news to share with you, but I must caution you that we cannot be too optimistic,” says Dr. Linch as he enters the office. “The marrow test revealed some signs of new red cells. The question that is unanswered is whether these are indeed new cells or did we pick the sample from dying part of the marrow?” Dr. Linch says as he scans through the blood results.   “But today’s blood results are better than yesterday’s. The percentage increase is so negligible that one would want to ignore it,” he says as he leans back on his chair and taps his fingers on the table while looking into the corner of the room.

“I am not prepared to ignore this, and if we have to wait another day for the infusion, then so be it. I am not prepared to take a chance, at least not today,” he says in a low voice as though talking to himself. Having made up his mind, Dr. Linch stands up and instructs them to return after two days, at which time he will reassess the situation.

Two days pass.

It is a miserable, windy, and rainy day, as Mehboob, Naila, and Taheera make their way to the hospital. A short walk to the bus stop, the underground, a change of trains, and then a short ride in the taxi to the hospital. It is an hour and a half commute.

After going through the routine of the blood tests, they wait patiently for Dr. Linch. A nurse comes by to inform them that Dr. Linch is called away for an emergency.

“The test results have been sent to Professor Huens and Dr. Linch has asked that you see the professor tomorrow.”

The next day, they make their way to the Department of Hematology to meet with Professor Huens, whom they have not seen since their first meeting on arrival in London.

“Good morning, young lady,” he directly addresses Taheera. “Do I detect a smile? Ah, yes, I do, and it is infectious. No pun intended,” he says to engage Taheera into a conversation. “Let me ask you something, young lady. How would you like to go home, and I mean to your home in Nairobi!”

End

 

A personal observation, what was supposed to be Taheera’s story, has become Mehboob’s story.

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