Mohamed Irfan Sharaf's story:
"I am now out on the streets, virtually begging to make ends meet." Sharaf said to us at the first meeting of MMW on Against Abuse web community on 25th December 2007. None of us could see it, but sure as the sky above our heads, Sharaf had more than a tear running down his cheek!
Sharaf is the 2nd child born to middle class Male' family where both parents held clerical government jobs to provide for the 4 children and 2 grandmothers. His parents invested heavily, without having a laari to save for the future, in the education of all 4 siblings. They are what they are today thanks to their parents resourcefulness. Enough about Sharaf and his family, the story is actually about Sharaf's 2nd child, Mishka.
Mishka was born 2 months premature after a torrid 7 month pregnancy. She was born at IGMH and spend nearly 6 weeks in the hospital having fought terribly hard during the first 2 weeks of her life for survival. That experience gave us a lot of confidence in the new and upcoming health care providers at IGMH, hope that we were indeed in good hands and that we could expect things to finally take a turn for the better within the often negligence-riddled system.
Mishka was just less than 1.5 kg at birth and was so tiny that we were afraid to touch her, afraid that we may do her harm. Half an hour after her birth, Dr Abdulla Niyaf, the Paediatrician on duty that day briefed us on what had happened at birth, what he and his colleagues were planning to do and what we could expect within the next few hours and days. Apparently little Mishka was not able to initiate breathing on her own after birth and required assistance with breathing. Within a few minutes, she was breathing herself, but apparently not with enough of an effort to maintain good oxygen levels within her blood. She was admitted to the NICU and given mechanical breathing support.
We were already financially broke, having spent all our savings on the multiple hospital admissions for premature contractions and threatened miscarriage. Had it not been for financial support from a close friend, who we now take as a brother, we would have had to beg for money to support the daily cost of medicines for Mishka. Mishka did need very expensive medications during the first day of her life, 2 injections of surfactant had to be given into her airways each costing nearly MRf 2000.
There were times during the first 2 days when we though we would loose Mishka. We shed many a tear each time we saw her in the NICU. She was, we are sure, looked after very well but for us common people seeing several tubes coming in and out of the little baby was a sight that pained us greatly. It was a very mixed experience overall, some days we would be buoyed by the changes in her condition and the professionalism shown by the treating doctors, while on others we would struggle to talk to other doctors who were sharing the responsibility of caring for Mishka.
When Mishka was a week old, we were given a longer than usual briefing on her progress and plans for the next few days. She had stable breathing parameters and was apparently showing good effort of breathing. Dr Niyaf said that Mishka was needing only a little bit of assistance from the breathing machine. She was doing as well as they were expecting and that they hoped that Mishka would be able to come off respiratory support soon. Our prayers were answered.
The next day, Dr Niyaf and Dr Zumra gave us the happy news, Mishka was off the machine and doing very well. That was a relief. We had heard of terrible stories of medical misadventures at IGMH that we were terribly afraid that similar things could happen to our little Mishka. But Mishka was indeed in good hands. Even the foreign doctors with whom we had some tension were caring towards Mishka; Dr Balaji was himself, but a cauldron of knowledge. I know that it was a team effort, the key players just making sure that the team stayed focused. My wife fondly remembers a couple of Nurses who made her a part of the care-team. The cheerful chatter-box, Sheeza and the sweet smiling Jeba were her favorites.
We made it thorough the tough time, Mishka fighting for her life and winning the battle thanks to Allah and the efforts of a team, we learned to respect. We often complained during the last 3 weeks of our hospital stay, when Mishka played yo-yo with her weight. We were warned that this period would be long, we didn't expect it to be quite that long though.
Finally, we were given a 2.2kg and healthy Mishka to go home. We were in a hurry to go home that day and we forgot some very important things. We went back to IGMH the very next day and thanked Dr Niyaf, Dr Balaji, Dr Zumra and even Dr George; someone who would later break our hearts.
The IGMH experience, a largely good experience had cost us well in excess of MRf 50,000. We didn't have that kind of money. Letters from IGMH doctors helped secure financial assistance that helped pay most of the bill. We were happy, broke yes, but still happy. Even if we had to spend every laari ourselves, we would have, a child is worth whatever it takes!
That was the happy experience that Sharaf narrated to us before his face turned gloomy. We knew it was coming. We could see the dark clouds hidden behind the happy shimmer in his eyes.
Mishka had spent 6 months growing well and showing no signs of having been the tiny baby with several tubes coming in and out of her little body and attached to machinery to sustain her life. Her big brother was just getting used to having her around the house and getting over the jealousy sibling rivalry when we were hit by a lightening bolt.
Since discharge from hospital, we had made a terrible mistake. It wasn't easy to get an OPD appointment for our favorite doctors, the ones who gave us back a healthy Mishka. After the first 2 follow-up consultations one with Dr Niyaf and the other with Dr Balaji, we opted for "experience" and ease of getting an appointment. We consulted Dr George as advised on a monthly basis. With Mishka turning 6 months, we were scheduled to consult Dr George for the 5th time, when she had what we thought was a mild fever.
We didn't take any chances though, we took Mishka to IGMH and showed her to Dr George. Mishka was not herself that day, she didn't allow a good examination. We know Dr George struggled to see her properly. We were a bit concerned about how Mishka was breathing and mentioned it to Dr George. He dismissed our concerns rather off-handedly. We found that a bit odd, but thought that the doctor would know better.
Mishka was being given all 4 medications as advised, not a dose was missed. Her mother made sure of this. But something was not right with Mishka. She really wasn't breathing normally. It was the 3rd day of treatment and late in the evening. Mishka was breathing a bit heavily. Her cough had also become more chesty. The fever was gone though. We got an appointment to see Dr Vanitha at ADK.
Mishka was a bit restless in the doctors room and a thorough examination was not possible. The doctor said that she was having a severe form of cold and there was some "chest cold". She asked us to change the medications including the antibiotic we were prescribed before. She assured us that Mishka would get better soon.
That night was terrible for us. Mishka did sleep, perhaps because of the Phenergan that was prescribed for her. We stayed awake in shifts because Mishka tossed and turned a lot and slept fitfully.
Early morning the next day we went to IGMH and tried to see if we could meet Dr Niyaf, Dr Zumra or Dr Balaji, the very people who helped us before. It was Dr Niyaf's "off-day", Dr Zumra was busy in the NICU with a sick child and Dr Balaji was out of station. Just our luck. We saw Dr George in the corridor and requested him to see our Mishka as soon as possible. He asked us to sit outside room 37 and that he would be there shortly.
It was 9:30AM when we saw Dr George. He said that She needs admission for treatment and that he suspects that Mishka has a chest infection, he called it Pneumonia. By now Mishka was grunting and breathing terribly noisily. We were given a slip to get a chest x-ray, which would later show a large "pneumonic patch" and a "pneumothorax". After a look at the x-ray Dr George, still in room 37 said "it looks OK" but told us to get admitted anyway.
On the way to the admission desk, we met a family friend who was a close friend of Dr Razi. He took the x-ray from us and went to show it to Dr Razi, who was apparently in an OPD room too. Our friend would return to tell us that Dr Razi said it looked very bad and that he would recommend immediate admission.
We quickly got Mishka admitted. Dr Ismail Shafeeu was very helpful. He quickly started treatment. Mishka's condition was clearly critical. Dr Shafeeu had said that Mishka needs ICU care and that she may need mechanical support for breathing. It was a scary thought. We had already started making plans to take Mishka to Colombo as soon as possible. My brother was making all arrangements for that while we were in a new struggle for Mishka's life.
Sadly though, IGMH could not afford an ICU bed for little Mishka. It was full. All 8 beds in the "immense" ICU was full and not even one could be moved out. I saw how hard Dr Shafeeu and the junior staff tried to get a bed in ICU. But it just didn't happen.
Because of our experience when Mishka was in NICU, we were able to understand what the numbers on the monitor to which Misha was connected to meant. Her oxygen was way low, 85% at the best of times, with full oxygen by mask. She was agitated and very irritable. Preparations were already made by Dr Shafeeu to have a tube inserted into Mishka's chest to remove the "pneumothorax". Meanwhile my brother was able to get seats for us on Srilankan to Colombo to fly out in 4 hours. This new plan prompted the surgical team, who came to place the chest tube, to do what they called "needle drainage".
With Mishka struggling "needle drainage" was done in the treatment room. Mishka remained the same though. Dr Shafeeu wanted to have the chest drain in place for the air-travel but the surgical team though the needle drainage was sufficient. We didn't know what to think. It was beyond our comprehension. We were eager to get Mishka to an ICU; in Colombo if IGMH could not get one for us. She needed that. We needed to give that hope for her.
We flew out that day with Mishka hanging on to dear life, just so only. The 4o minutes or so travel time went off ok, Mishka didn't collapse that is. The nurse who accompanied us kept checking on Mishka every few minutes to see if anything extra needed to be done.
Our luck ran out on the ambulance ride from the airport to Apollo hospital. Mishka's breathing became ragged. She looked pale in the face, her hands were dusky and she was gasping for air. The doctor or male nurse on the ambulance worked frantically to assist Mishka to hold on till we reached Apollo Hospital. Mishka had fought hard.
We were shattered. Mishka was pronounced dead on arrival at the emergency room of Apollo Hospital. We couldn't believe it. I couldn't even cry, Mishka's mom fainted. Mishka, our lovely Mishka had left us and traveled to heaven.
Sharaf was sobbing now. He couldn't say anything more. The rest of us felt the pain and the anguish. We offered our support to Sharaf and pledged to fight on till things improve in our health care system.