Finally a diagnosis!!

Two days after her surgery!

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!!

About RockHardMom

At present a mother of two kids who is set out to raise awareness about Total Colonic Hirschsprung's Disease and PDD-NOS!!
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5 Responses to Finally a diagnosis!!

  1. rakhshan says:

    What pain must Yusra have gone through those first eight months. Its hard to even think of. Poor baby! I hate akuh its just the name now, I had a bad experience with them and now I know better.

  2. Afshan Ehsan says:

    Dear sana u sure is a strong mom and u rightly said that sometimes u don’t have any option then to b strong and face the situation but Allah always puts those in pain whom He loves. And u know u shd b a proud mom that u have a brave daughter. Lying helpless in the mid of OR suit needs a lot of courage, I know that.
    Plus try to forger the bad things that happened and cherish what went right.
    Sometimes things are meant to be the way they happened and sometimes its just not the right time, as we believe whatever happens Why,When and How is all decided by Allah.
    Sometimes v being doctors get blind v don’t see the things the right way although v have been learning those things for years. But v Neva mean any harm. M not saying this Cuz I work in AKUH but this is what the ground reality is. I don’t want to comment on hospitals policies but as being doctors v put our last bit of energy too for the sake of our patients, v leave our homes our children our warm bed for people and v r not even paid much.
    V do miss things but not due to neglect but due to the reason v muse on throughout our life questioning ourselves that y did I do it.
    V Neva mean harm sweety
    May Yusra live a loong and healthy life Ameen

  3. RockHardMom says:

    Yes Afshan, I agree with you on one account : Everything does happen at a predestined time in a pre-destined manner. Secondly, I also believe that doctors are only humans who can make mistakes. The thing is when your own child suffers because of human error one tends to become biased.
    At seven days of life when my daughter was battling death, my sister who is a doc in USA and had seen Yusra’s condition with her own eyes consulted her fellow paediatrician who right away suggested to check Yusra for Hirschsprungs. That was the first time I had heard about this disease but didnt know what it meant. When the surgeon who came to saw Yusra in PNS Shifa’s NICU (the hospital where she was born) and told her that they were planning her surgery we had panicked and shifted Yusra to AKUH because we believed if it had to be a surgery than no better place than AKUH.
    The only thing that bothers us still is where Neonatal physicians conducted all sorts of tests on my daughter, even the very painful Meningitis one, and ruled out Hirschsprungs…means that they did consider Hirschsprungs… then why on earth they didn’t do the one rectal biopsy to be 100% sure ? Yusra’s stomach was still distended, she still had severe constipation and was vomiting at discharge…how could they discharge her without a proper diagnosis?? Yes they did get blind, but since it was my daughter’s life at stake I blame them because I can’t blame Allah.
    I dont mean to put a bad name to AKUH because I have to take my daughter there for her future surgery and I did mention that AKUH’s after care is unparalleled according to my own various experiences. But one bad decision can have a great impact on someone else’s life!!!

  4. Amzzy says:


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