Ramadan, the holiest of all months, is the most awaited month of the Islamic calendar. Muslims around the world prepare themselves enthusiastically to welcome Ramadan. It is the month of fasting, which doesn’t merely include abstinence from food, but abstinence from committing sins of all sorts and indulging in good deeds and prayers. I, like others, have always eagerly awaited the arrival of Ramadan, for me it meant that for at least one whole month I could be much closer to Allah (swt) than the rest of the year. The enthusiasm is still there, however, but for the past five years, Ramadan is also reminiscent of the bitter memories of that one day that had turned our lives upside down.
28th August was the date of my husband’s reporting to Masroor Air Base, Karachi. We were given only a week to pack and move. Yusra was having a hard time with her bowels but since it was nothing new for her so this issue didn’t get due attention. We moved to Karachi, our home station, the place of my parent’s abode, on 26th August. My entire family was very excited! I was to live with my parents until the time we could get any accommodation on the Base. The first two, three days in Karachi went by uneventfully. The weather of Karachi was very pleasant, what’s with the Monsoon Season which brings with it heavy rain falls. In the wee hours of the dawn, on 30th August, Yusra started vomiting. At first she was throwing up milk, when I tried giving her water, she vomited it out too. Around noon, Yusra’s condition started to worsen, her stomach rejecting everything given orally. I rushed her to the ER of the nearest hospital, AKUH, the most renowned hospital of Pakistan. She remained in the ER throughout the day in which time she was hydrated through IV fluids. Whenever her condition became stable and I tried to feed her, she would start vomiting again. Her condition became way past the understanding of the residents in ER, so eventually she was admitted in the general ward. The next day a team of doctors came to check-up on her and gave us the verdict that there seems to be an intestinal obstruction which if not treated through surgery within 8 hours would prove fatal. We were left with no choice; we didn’t even have time to consult other doctors. Already being in the best hospital in town we put our daughter in their hands with full belief.
How much time does it take to perform a surgery to remove a portion of gut? One or two hours maybe! We had no idea. I prayed and prayed but never did I cry. Something happens to me in tough situations, or where I have to stay strong, Allah gives me strength of which I’m not even capable of having. I had to stay strong for my daughter and for my husband, let’s call him Alan. I was not strong enough to see my daughter off in the OT and my husband had to be with her until the time the anaesthesia took effect. The way Yusra clung to her father’s T-shirt and looked at him with those questioning eyes as to what she was doing in a room full of heavy duty gadgets, with strange people adorned in scrubs trying to calm her down is something past my endurance level. Alan showed great strength at that time by being with her.
One hour turned into four hours! We started getting scared, we had no idea what was going inside OT, every time we tried to contact someone coming out of the OT we were told the operation is still under way. Those four hours were the most torturous for us! Finally the head surgeon, Dr. Arif Mateen, head of the Pediatric Department of AKUH, came out of the OT. The next step was to brief the parents about the surgery while Yusra recovered from anesthesia in the Recovery Room. What Dr. Arif told us that day was beyond our comprehension and endurance.
Hirschsprung’s Disease!! That is not only hard to pronounce but hard to write as well. Yusra had gone into OT with a diagnosis of intestinal obstruction and came out with Hirschsprung’s Disease (HD). This word is not even recognized by Microsoft office!! This is not all. Hirschsprung’s Disease can affect as little as a little portion of the rectum and as much as the entire gut. This means that its severity is directly proportional to the part of the gut affected. My daughter was diagnosed with Total Colonic Hirschsprung’s Disease (TCHD), i.e. her entire colon and terminal portion of ileum is affected. Briefly stated, HD means the absence of ganglion cells that line the walls of our guts and help in propagating food towards the anus. Without peristalsis the food would just sit there and clog the intestine. When the intestine is clogged with undigested acidic food, one can’t even imagine the havoc it can wreak on the linings of the intestine.
The most effective test to diagnose HD is rectal biopsy. Yusra was discharged from the NICU on the twenty second day of life by ruling out HD, without even performing the biopsy. She lived for seven months after that in constant pain and with failure to thrive. Had we been wiser, we should have challenged the diagnosis of the doctors in AKUH. It’s criminal!! When Yusra’s emergency surgery was planned, she was 8 months old and weighed only 5.8 kgs. She was put into surgery for four straight hours, how much anaesthesia does that require to keep her unconscious? No idea!! The only good thing about the whole surgery was the facility to conduct frozen section biopsies by taking samples from four different portions of the gut. Three portions were aganglionic, however, the fourth portion taken from the terminal portion of the ileum showed ganglion cells. To top it all, there was an inch of a constricted piece of intestine on the junction of ileum and colon. All this information was entirely new to us and we were not ready to digest it! There were tears in our eyes, the first time I saw my hubby crying! The only question that came to my mind was how much time does Yusra have living with this disease and the surgeon told us maybe around 30 or 35, which was a bit of a relief back than but now we know that with proper life support people can live long healthy lives.
The first time I cried unstoppable tears of helplessness were in the AKUH cafeteria, sitting there all alone eating my first morsels of food for that day. I cried not caring what people around me would think. I guess everybody who visits a hospital understands if they see a crying person. After standing strong for everyone who visited me that day I had reached my breaking point. Crying lifted some burden off me and now I was ready to meet my daughter with all her new challenges!!